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I just showed this to my wife, who I've been badgering to go to the GP to be assessed for EDS for MONTHS. She literally had EVERY symptom you mentioned. She's agreed to ring the doctors, FINALLY
@PonderfulYT just over a year ago I learned a bit about EDS from a friend who I knew with it, and the more I looked, the more I realised all of these many things even eerily closely described in this video intro were reminiscent of my childhood and especially early 20s, still amplifying as I approach 25. And I looked into it with a doctor, with zero medical records because my Mum never really took me, and they just left it at "you don't have any family history of this (family doesn't really visit doctors) and aren't experiencing obvious severe physical disabilities by it so we can't do anything" So that's where I am now. Knowing I may well have a degenerative disorder, but having to be careful and jot take risks, and wait until it degenerates enough to actually be sent for testing 🙃 Like, I managed to accidentally cut my knee with a craft knife 3 months ago to a degree that I was told "Doesn't need stitches and is dramatic to be struggling to walk after a few days rest" and it still hasn't actually healed. It still hurts and limits movement. And I was a clumsy kid with a lot of mild knee injuries growing up, it doesn't usually take this long.
@@lilpetz500 symptom journal and take pictures of injuries, wounds, and bruises. That has been game changing as someone who can't go to the doctor every time something happens. If it's not resolving I can scroll back and show the original injury and the healing process so far so the providers have more to go on.
I was lucky enough to be dx'd when i was 11yo · downside is my mum, brother, & daughter don't "believe" in EDS. HENCE? I'm shunned. Of course, they also dont believe in my other 2 dxes too · PTSD & Autism. Cos autism = diapers (?), & PTSD = Fighting in wars. Anyhow good luck to anyone & everyone dealing with the crap that is EDS. Love & Peace to all y'all.
THIS I was litterlay thinking about this for a few days I "just" had depression hit me and I litterally couldn't leave bed then I wasn't depressed anymore (I have episodic depression or whatever it's called in english, in German it's "mittelschwere rezidivierende Depression" or something like that) and I helped my brother move I got up at 7:30 when usually I get up at 12 (yes, lunch) and was awake till 2 am, moving heavy ass boxes and furniture around from 11-19:00 and I felt fine I didn't even have muscle aches the next day HOW DO YOU PLAN AROUND THAT. you never know if you have your full energy compliment a day, or half or litterally nothing???? especially with adhd, your motivation comes so sporadic. Sometimes I can't do anything for two weeks and then I do the work of two weeks in a single day...
i’m autistic, severely depressed and a couple more mental health things along with undiagnosed physical stuff. this is my exact experience. most days i can barely get out of bed, shower, eat etc. then one day i’ll have the energy to clean the whole pile-up of depression mess in a 12-16 hour session. it’s so awful, all i want is consistency and routine.
CFS here. I can't even spend time doing "dagbesteding", literally meaning "spending the day" where you go out to do something, whether that's light work (for no pay) or creative things just to get you out and about. It's because noone can rely on me due to inconsistency but I don't feel any fulfillment doing things without a greater purpose such as caring for others. It's a big yikes
I think many doctors either forget or fail to realize that 1 in 10 people have a "rare" disorder. (I think it was defined as "as 1 in 20,000 having the disorder") those zebras aren't nearly as rare as you might think.
Zebra isn't used like that. You take into account where in the process you are. A physician may see 20 people on a day and 10 of them might have a cold, one a twisted ankle and then some other common conditions. A few a week or a month require a specialist. What is a zebra to the physician might be a pony to the specialist. 1/20.000 is barely a zebra, because that means you are pretty likely to encounter one during your career.
Also, you have to see the harm it can do and numbers needed to treat an numbers needed to harm. You have to consider those and make the diagnosis likely enough for you willing to accept the potential harm that comes with the diagnosis. Sadly, medicine is a bit of gambling and sometimes doctors lose the gamble.
A boss I used to have suffered for a number of years because she had a disorder that only 5 other people in the were recorded as having. They kept dismissing it and convinced it was something else because only 5 people in the world had that, so it was obviously something else. They finally started treatment because, well, they’d tried everything else, so maybe they should try the treatment for that… and she was much better. I under at the reluctance, but it’s sad she lost so much time.
@MissMoontree We aren't talking about doctors who "take into account where you are in the process" but rather doctors who assume "it can't possibly ever be a zebra" and dismiss you outright, which is unfortunately a large majority of doctors. I've had doctors dismiss a diagnosis that multiple other doctors have confirmed, long after already being diagnosed, simply on the basis of "think horses, not zebras." The phrase is abused by doctors to dismiss patients because it's easier, and THAT'S the problem we're discussing.
The first time I applied for any benefits, when they asked me if I was disabled, I said "no," but my friend who came with me pointed out the fact that I had my Service Animal with me, so the person behind the counter agreed with my friend. That was literally the first time I ever even considered the idea that I was "disabled," despite training my dog as a Service Animal and using him for 3 years prior.
Similarly, I think a lot of people who use THC for anxiety, pain management, etc., don’t consider it to be self-medicating. (I was one) Same thing with suicidal ideation. I assumed for well over 20 years that depression and suicidal thoughts were normal - just something everyone went through. The lack of education prevents awareness, which prevents acceptance, which prevents support.
@@Kellan__they-them likewise. I had to hear from many people that they’d never once thought about suicide for even a second before I started to realize my experience was the more unusual once. It took many more years and fully separating from my entire family, getting therapy to start making some deeper progress toward better health. Still struggling, but doing my best. I hope you’re doing better, too
Ah they teach us this in the literature for rehab counselors. You can specialize in disabilities and have most the people who come in for disability rehab not acknowledge that they’re in that category. Really we should destigmatize this stuff. I get it can be hard, but it shouldn’t be terrible or make anyone feel lesser to be in this category of support needs that everyone will be in at some point in their life, like everyone will become frail or impaired by age or whatever eventually. Hell everyone with glasses is impaired without that technology
Before I knew I was autistic, I went to an appointment with an EDS specialist at a clinic. I'd waited for a year and a half for that appointment. Turns out that going to a high-stakes medical appointment all by myself made my neurodivergent brain shut down. I had a list of symptoms I'd written down, but wound up unable to relate them. My memory is no great shakes on a good day, but during the appointment I could answer very few questions in any definitive way. And the appointment ended when the doctor in charge looked me in the eye and asked me, 'What made you think you have EDS?' I was so upset and humiliated that it was all I could do to walk home, because I couldn't make myself get on transit. So much of what you related mirrors my own experience. The other day, I said to my husband that I wasn't sure how much pain is a normal amount to feel, and he said, 'None. Most people are not in pain every day.' And it got me thinking that maybe I should try again to seek a diagnosis. Thank you for sharing.
Pain is the body's way of telling you something is wrong, which means the the default pain level (aka nothing is wrong) is supposed to be zero. Maybe a 1 or 2 or even 3 if you've exercised a lot. But even then, the thing that is wrong is that your muscles have torn during exercise, but it will heal stronger.
@@sandwichqueena little bit of pain always? That is actually abnormal and you might want to check that out instead of using it so devalue the experience of others. It’s impossible to judge the experience of someone else as an exaggeration without actually experiencing what they are experiencing and the fact that you feel comfortable doing so is a pretty big red flag
I'm so sorry about that appointment! I really hope you can go back with someone who can advocate for you. It's just not fair to expect people who have been shamed and belittled their whole lives to suddenly be incredible self-advocates. Patient advocates accompanying us to medical appointments are so useful and important.
I hadn’t really considered that something always hurting was not normal. I get these random extreme bouts of pain every so often, but usually is just minor. Not feeling pain is the exception rather than the rule. Really resonated with the list of excuses (probably bad posture). Oof.
What's funny about this condition, is that it's one of the few where straight cis males have very little information. It's one of the few places where medical misogyny is upside down by necessity. Most of the studies are on womenand AFAB, because it affects them with much higher frequency. Your metaphor about the Savannah absolutely rings true. My rheumatologist actually said she wouldn't have thought to look for EDS without my binder full of symptoms, because she'd never had a male patient with that diagnosis.
I've been trying to get diagnosed with EDS for the past 3 years, after lump diagnoses of Anxiety (chest pain, heart fluctuating a bunch, joint pain, panic id faint) and Functional Dyspepsia (one bite of food and I was nauseous, burping, and cramping). All the joint pain development as I lost my conditioning from sports in highschool just continued to grow at an insane rate for a young 20s male. The doctors just said the pain was anxiety. Like, WTF, sure I'm anxious, put the pain started first and then I got anxious. Started abusing sleeping pills/alcohol to cope with the pain. As more symptoms cropped up, my health anxiety worsened, trips to the ER for chest pain, shoulder pain (sublux/disloc), difficulty breathing, or feeling I'd pass out. It was after I saw the smallest of actual improvements in my symptoms after watching tons of content from zebras and the eds society that I related to more than anything else (except ADHD content, relate and am officially diagnosed that too), that I officially self-diagnosed myself with EDS and my panic and anxiety quickly calmed down. Being a cis male probably hasn't helped in trying to get a diagnosis. But my bendy body should make it more than obvious to a doctor with an Ego in check enough to truly consider the possibility of truth in a patient's self diagnosis.
It's easier to get a male diagnosed with EDS, if a close family member is already diagnosed. That's why I got my EDS dx before I started the same process for my son.
@@ThisIsATireFire I've been trying to convince my sisters to get diagnosed, but they both have fewer debilitating symptoms than me because they've been more active and maintained their fitness from childhood better than I have. The sister who I have a closer relationship with since we're both likely AuDHD (though only officially diagnosed w/ADHD) also believes that we all have EDS. Though she hasn't sought out an official diagnosis. The most recent Dr I went to dismissed EDS for me since I don't have any close relatives officially diagnosed, but at least she did admit that, at a minimum, an HSD dx would likely fit for my symptoms and test results.
Thanks for sharing, did you get any help? I've heard of people getting a diagnosis, and that's it...Just wondering if I should waste any more time with the career clowns. Dude here, same experience pretty much. Thought the pain was normal. Go to doctors after it got too much, get prescribed exercise (while doing 60-100,000kg lifting every week for a job), physio (riiiiight...), anti-inflammatories (makes it worse and more), antidepressants (No thank you, I have physical ailments needing attention and these prescriptions are making me depressed and anxious!) and/or psychology (I was introduced to mindfulness in the 80s, back when "Westerners" were making fun of it...I won't be paying a week's wages that took months to save up, on a one hour appointment to let the "professional" know I'm in need of medical interventions not easily commodified extracts of Eastern philosophy). At 38:15 Ember Green points out the major flaw in most "thinking" today, which leads me to the question, "Does this actually affect women more than men?". Maybe there's a bias against dudes... When I was younger, younger dudes masked health problems to avoid showing weakness, the world was a prison yard. As I grew up the stories of oldheads stayed consistent, like the experiences Ember related here - They never bothered much because we don't get believed/listened to, we don't get healthcare.....unless we're rich? Or a woar grinninal... Not sure that can be accounted for properly via statistics. At least openly... I'm having success with the Cannes e voooor diet btw, just in case it helps you or anyone else.
@@subwayfacemelt4325 well, I'm a veteran, so I'm at the mercy of the VA healthcare system. Which means that, no, I I haven't gotten anything past the diagnosis. There's a specific reason for that though. In the time it took for me to finally get my diagnosis, I still had to do something about the pain, so I have a mmj card for my state. The thing about the VA is that as a federal facility, they take the whole schedule one thing very seriously. Pain management told me, an every day user for a confirmed chronic pain condition, that I would have to pee clean before they can work with me. So, long story short, I absolutely haven't gotten anything past my diagnosis, but I do have a very specific roadblock in my way.
I was lucky, I was diagnosed with Ehlers Danlos at 3 years old. But when I was 11, I got in a car accident that left me bed ridden. Every symptom I had got worse. New ones came with it. I was in, so much pain. No one believed me. I had the medical documents to prove it. They thought I was a problem child, wanting unfair benefits. Saying they’d do one thing to help me but never following through, then gaslighting me when I brought it up. It got to its very worse when a nurse began to accuse me of making this up cus of mental illness. She would talk so sweetly to me while saying the cruelest things. She called CPS on my mom because she believed that my mother (a women of color) was hysterical, was keeping me home from school when in reality I would collapse every time I got up. Nothing ever came of it, thankfully. But it did scar me.
I swear everything you said in this comment is exactly my experience, it's kind of surreal. School administration thought I was a problem child, wanting unfair benefits even though I finally had the medical documents to prove my diagnosis (EDS, AMPS, IBS, and scoliosis). Both nurses at my Middle School were absolutely terrible and I think they traumatized me and engrained the idea that I was "lying about how I felt" and "just overreacting", it was horrible and I still experience it. I would go to the nurse for body pains, stomach aches, headaches, and back pain (talk about foreshadowing) and even when I would ask them to call my parents because my parents know me better than them and how to treat my pain, they wouldn't until I FINALLY got an IEP were they specifically stated in the documents that they HAVE to call my parents if I request it. The school would say that they'd help me but would never follow through and would gaslight me whenever it was brought up or just wouldn't respond period. It's been 3 years in this hell of a Middle School and my school still thinks my mom is keeping my home from school to party or something when in reality I'm in chronic pain 24/7 and in a constant state of stress. Anyway, I'm sorry that happened to you, it hurts me to know other people had to experience similar things I did when no one should. I'm glad the CPS calls never went anywhere, but stuff like that sticks with you forever.
@@Nixcharon We should be open and artist, to tell our stories. Never let anybody silence you or think you deserve the mistreatment you’ve been given. I eventually dropped out of high school and it was the right decision for me, about to get my GED this February. Things do go up from here.
So traumatizing😢 my mom is WOC too and we went through something so similar. Dont people like that nurse ever think we sure wish we could know how they feel? If they feel so healthy, good, strong, and fit why be mad at or punish others simply for not being the same...
Honestly, as a disabled person in the UK, the fact that you said you had an appointment in 5 minutes and had time to talk for a further 47 minutes is super relatable by itself 🙄
Your system could be better, but anytime you are upset with it, remember the US system and do what you can to make sure your politicians understand how important it is.
@@thoughtlesskills Can't disagree with that, though I'm pretty sure our ruling class already do understand, and they're actively working to dismantle the NHS so our system can work more like the one in the US. Neoliberal capitalism: Hurting everyone but the rich is the system working.
@@thoughtlesskills This isn't about oppression olympics or who has a better system. Free healthcare is great, but we have our own problems, especially seeing as the current Government are purposefully throttling it to make it as inefficient as possible to try and push for privitisation. The system is failing by design. I've seen several people in my circle of friends and familiy die recently due to negligence and slow acting within the NHS, and the Goverment WANT that. I could throw your logic right back at you and say "Sure, your system could be better, but anytime your upset with it, remember the UK system and the fact that I was in a 5 year waiting list to be diagnosed for ADHD and another year+ wait for medication, while my American friend was diagnosed and medicated for her conition in 2 months".
@@Spamhard I don't believe the comment was about oppression olympics, but was more of telling people to use what happened in the US as a warning for what is coming for the other side of the pond, too. It's not a dig or a 'haha we have it worse' it's a 'fight to keep it from getting worse'. Which is not wrong to say. Now, if you want oppression olympics, I waited 7 years in the US for an ADHD diagnosis and can't get meds because doctors refuse to prescribe adderall and the like without requiring monthly drug tests, which I have to pay for myself and can't afford, because we do not have free healthcare and insurance does not cover drug tests (or my other meds for my physical disability! wheeee!). But then, I am also not saying it's sunshine and rainbows in the UK 🤷
I have POTS, EDS, CFS, and ADHD (all the acronyms, lol) and despite now having official diagnoses for my issues I STILL gaslight myself into thinking that I’m not even disabled and I’m just making up all my symptoms or not trying hard enough. Thank you for this video ❤️❤️
On the verge of tears because I have hypermobile joints, I was diagnosed at about 16 or 17 and sent to physio to "straighten out a bit" and fix the tissue damage from my injuries. I knew I had to take care of my joints and be careful but NO ONE, I mean NO ONE understands or accepts the always feeling cold, the stomach issues, the eye-fatigue, god, the WHOLE BODY FATIGUE all the time I can never sleep enough, I can never get good sleep and I like fitness, I work out but Im careful when I do it but no matter how fit I get, I'm always SO TIRED and so weak and slow and it feels impossible to work a full time job and exist, to have the energy to clean my clothes and feed myself and everyone acts like it's so easy and I just can't understand why I'm so tired and they aren't. I'm seconds away from exhausted crying.
I think under capitalism people are used to hiding alot of their pain because showing vulnerability is frowned upon but plenty of people struggle with various body pains and conditions we are taught to neglect and break ourselves just to build profit but most people who are not grotesquely wealthy are going through alot it's just under the surface and invisiblized
@@AeonZhang exactly it's good to be supportive people deserve to be happy and comfortable and feel heard, solidarity with everyone struggling hang in there shit is hard but our voices and experience is powerful and resilience is inspiring in the face of the overarching cesspit of violence and suffering
I fully passed out on Friday after my biology lab because even though we have chairs, it’s just easier to get good visibility of the animal while standing and I was not gunna sit down till I was done. So that was fully my fault lol, but I got back to my room +on day 1 of period so everything hurts moreeee and just slept. For 2 hours. I’ve slept for 14 hours or more on weekends before and the only thing that got me awake this morning was a text asking to meet for dinner but I had stuff to do so I got up to work on that stuff first. (I woke up at like 11:30 btw dinner at 6 I’m a pretty slow worker.)
one of my closest friends has EDS and endometriosis, and can't get on disability for the reason that since "EDS can improve with exercise" they can't guarantee that she will be disabled forever and therefor is able to work..... it's such a miserably unfair way of reasoning.
In Germany the Bar for disability is: longer than 6 month. With people which conditions might better have a reassessment in a few years or everyone who turns 18. Probably different where you live but I hope keeping it in mind when fightibg for rights, that better refulations like this are possible and even state of the Art elswhere :)
Wishing your friend lots of love and all the comfort possible. ❤️ If she's looking for specific ideas to consider: A friend of mine takes progesterone for her endometriosis and it's essentially saved her life. I take a daily progesterone-only pill for severe PMS symptoms that used to wipe me out 14 days a month, and I highly recommend anyone having uterine- or hormone-related pain, or major mood and executive function changes, inquire with a provider about it or a comparable treatment. Can a lawyer, social worker, or, if you're in the USA, her county's Aging and Disability Resource Center (ADRC), help with a Disability appeal? Unfortunately, it can take multiple attempts. As for exercise, some folks have significant exercise intolerance. It's been revealed that the "PACE" medical trial's data about graded exercise for the chronically ill and disabled was "adjusted" to show better results, when actually a whole group of patients were made worse by the program. Jessica Kelgren Fozard has an older video about it. (She's lovely, and her video on NOT banning straws is essential viewing, but I stopped watching her channel because she was still doing Better Help sponsorships, after BH's irresponsible privacy practices, and other issues, came to light.) Wishing your friend lots of love and all the comfort possible. ❤️
What boggles my mind is so many conditions like EDS and Marfans cross over with neurodevelopmental conditions like autism, sensory processing disorders and ADHD and yet not all doctors are even aware of these crossovers. Imagine if you were diagnosed with one condition and the doctor actually suggests you might also want to get tested for related ones as well. Would save a lot of us time, effort and mental stress.
IF they even heard about they only know what their speciality knows about EDS, like the rheumatologist only looks at joints and when I complain about my heart he looks at me like I was crazy - you'll need to talk to your GP about that.... And now I see all all the different specialist to all the different symptoms. And there is not much to be done about it anyway.
it isn’t even just genetic connective tissue diseases. if you have a family history of autoimmune disease or an autoimmune disease yourself, you’re more likely to have autism. same with fibro. same with me/cfs. it’s quite strange (and also explains why if someone with autism and joint pain may not necessarily have EDS- because they might also have autoimmune disease in their family, as maternal rheumatoid arthritis can lead to autism in the child, for example). autism and chronic stress (a massive trigger of autoimmune disease, ME/CFS and fibro, actually what got me sick lmaooooo) have a large correlation too. THAT’S why. It can raise a lot of false red flags too. Medicine is complicated. Still, autistic people are significantly more likely to get sick and, to put it bluntly, not ever really get well
So, there's hope. I was diagnosed with EDS last year. The only place in my area is actually a children's genetic center. That was fun. I'll be 40 in a few weeks. Had to take my kid with me since it was a school holiday, but my husband had to work and we don't have a sitter. At the end of the appointment, I mentioned that the kid was recently diagnosed with autism, and the doctor immediately had questions. He's requested that I bring him back to the children's genetic center (instead of going to the national center for rare diseases, which is within the same organization as the general children's center that dx the kid's Au. and also an hour drive from the house, in the other direction) for EDS dx because he's currently doing a long running study on the link between autism and EDS. I'll probably take the spawn to the guy doing the study. We all already know the results, but I want the official dx so we can chase down MCAS and other interesting things that are frequently part of this genetic party. I'm don't have an official autism dx personally, but I've had my adhd dx since '93. I figured out I probably have autism 13 years ago, but since I've got the ADHD dx already, I just don't see having it officially documented as being worth the hassle of jumping through the hoops to get diagnosed as an adult. TLDR; there are studies being done to prove and figure out the connection.
@@ThisIsATireFire Thanks for ya story. May I suggest considering "digestive health"? I seem to be reversing all the symptoms you mention here after trying a zillion diets, finally settling on a low-histamine, low- ox a late, Cannes e voor diet (also makes it low carb). Might be worth looking into, maybe try mentioning it to the doc, though looks like they have plans that this information could upset.
I also discovered in my 30s that I have pretty much the same list of conditions. I was just telling my therapist "sometimes I forget I'm not normal. And then the next day something happens and I remember my body is jello and I'm an alien."
I feel totally normal until I go into environments designed for the average person. I’ve of course made places like my home and car “me friendly” so I can function there! 😵💫
Clicked on the video thinking it was about eating disorders. I have never once thought I'd even potentially have Ehlers Danlos, but I just spent the first 15 minutes of the video violently sobbing because I randomly felt so seen and validated, I have every single symptom you had in the beginning and attributed to the exact same things. I don't even know where to go from here
Hi Maggie, thanks for sharing. Just wondering if you're better at all? In case it helps you, I recently went to Cannes e Voor diet (after trying everything else plant based) and it seems to be reversing my symptoms. I'm also following low histamine, low oxalate, low carb, and the "Auto Immune Protocol" guidelines.
The severity grading is very damaging to our cause! Yes, it makes sense to have similar patients in the same group, and we need a name for that group. But who the F came up with the terms "mild, moderate, and severe"?! Laypeople (and even some doctors!) don't understand "mild" and "moderate" at all, and they misinterpret "severe". Already a "mild" case of a condition can be what laypeople would actually call "severe" (disabled). When Laypeople hear "moderate", they think "annoying but bearable", although we talk about patients who seriously consider taking their lives! And it is not Laypeople's fault either. These terms where used very differently in everyday life, before some professionals decided to use them to describe their patients in a very wrong way 🙁
Apparently my other comment got deleted. Just wanted to say thank you for bringing awareness and attention to this 💖 And the cat breaks are always welcome 🐈😻
I do have very strict comments moderation settings turned on & also set a lot of words as "banned words". Perhaps one of the words you used was on the list, apologies.
@@Ember_Green I am not surprised to hear that you need strict moderation, unfortunately. The nasty thing is that UA-cam is very sneaky with its moderation. The system takes a minute to publish or reject comments. But for the commenter, it looks like a comment was published instantly. The comment will be visible to the commenter even after reloading the page. Then, a minute later, the comment may disappear without a warning. As a Leftist, I experience this regularly 🙁 I started to make backups of comments and edit them when they got rejected by YT. But sometimes, like in this case, the comment seems innocent enough to not get deleted by YT. In these instances, it is frustrating when YT proves me wrong 😁 (Not blaming you, just ranting against YT) Anyways, I thanked you for pointing out how the R1ght and N3ol1b3ral1sm incites h4tred against people with d1sab1l1t13s 😁💖
I have always been uncomfortable with any sort of self-reporting scale system (numbered, mild-mod-severe, etc) used as a medical assessment. Never made much sense to me...like it's obviously not an objective standardized measurement. Different people will consider it differently based on their own experiences or whatnot, so I'm always "overthinking" it. But more important it lacks all nuance and context. There are different types of pain beyond level of severity, there are life circumstances that could reasonably make one more or less depressed one week compared to others, etc. It'd be fine as baseline starting point for a more robust patient assessment, but I feel oftentimes it's effectively the majority of the assessment.
@@Kadaspala This isn't a self reporting scale. Doctors, psychologists, and scientists use this scale for diagnoses and research ... at least for ME and depression.
The smirking physical therapist reminds me of something that happened in my twenties. I went to urgent care -- in the US, without insurance, so you know it was really fucking serious -- with upper abdominal pain. The doctor pushed on my gall bladder and I made a sound, and she went "oh well you laughed so it's obviously not your gall bladder." She poked a couple more things and said "Probably just indigestion." I said "I have a digestive disorder so I know what indigestion feels like. That's not what this is." The way this lady just turned to my mother (who drove me cause I couldn't) and just said "Probably just indigestion." (It eventually turned out that I had a "lazy gallbladder" or another biliary motility issue which can mimic the kind of gall bladder attacks that gall stones will give you, and is a lot more common in people in their twenties than gall stones. Mine ended up going away on its own, fortunately, but fuck you lady, it's not indigestion.)
Trying to explain my disability to my employer was so difficult. Yes, I can spend 40 hours a week carrying around 30lb boxes. No, I can't spend 10 minutes standing in a checkstand or bagging groceries. Thankfully, even though she doesn't understand it, my HR manager has been very accommodating and expressed her amazement that I can work a job at all. Well, when your other option is to starve to death waiting for a disability hearing to finally go in your favor, you begin to accept that your pain doesn't matter to anyone else. Like many other zebras, I have the sampler platter of disorders. EDS, POTS, autism, ADHD, and my doctor says that according to my last set of labs I have an autoimmune disorder to look forward to when it decides to go symptomatic. I'm often asking my partner "does this happen to you?" I feel like a broken record and still I can't believe it when he tells me that he isn't in some level of pain at all times, that most people aren't in some amount of pain at all times. Every time someone complains about an ache or pain I take it as proof that everyone must be in pain and I just need to be tougher.
I also take any complaints of pain from anyone else as proof I need to be tougher. Sometimes, however, someone will pause their whole life or take the day off work or some other normal justifiable reaction in response to them getting nauseous or having big pain or a headache or vertigo or anything else, and it feels somehow validating to me. Like 'see, experiencing this thing is actually a real symptom that people who don't experience often find really awful and difficult when it comes around so much so that it justifies putting life on hold. You're not exaggerating, this symptom is really actually truly not nice'. That said, most of the time I feel very much like I am exaggerating because it can't be a real problem if it interrupts functioning almost every day, especially if there are sometimes when it doesn't interrupt functioning. If I was nauseous on Monday, I can't possibly be today also - especially because I was almost approaching fine on Tuesday.
@@Truerealism747 my doctor says it's too soon to tell from labs alone. The most likely seems to be lupus? It could take a few years or even decades before it becomes a real problem. My mom has MS and didn't have any major symptoms until she was almost 50. A lot of lupus symptoms overlap with my current symptoms so I'm not even sure if I will notice right away that there is something new wrong with me lol
I just got genetic testing back last month, and at almost 39, I finally got diagnosed with periodontal ehlers-danlos syndrome. As a kid, I felt so isolated by all of the experiences you described opening your video. Thanks for reminding me I'm not so alone, and some of the complex, often oxymoronic feelings that come with a chronic condition are a lot less scary when you aren't the only one having to navigate it. Thank you. It felt nice to be seen, and not just stared at, y'know?
god as someone else born in the late 80s, with a disabled parent who needed benefits my whole life, those headlines about benefit scroungers sure made our family feel like shit in the 90s/00s going on today. Trying to make us feel ashamed for getting help my mum can't survive without! I get so mad seeing those headlines every time.
The only reason I learned about EDS was I was getting evaluated for top surgery and my surgeon looked at me, my mom, then back to me and asked if we had been evaluated. We had never heard of it before and my mom was able to find someone who knew enough about it to diagnose her.
The absolute distrust towards anyone with an invisible disability is staggering and scary. I also got so many comments about "corpse look", "acrobatic flexibility", and "laziness" especially. My fatigue, my pain, my passable visible symptoms, people loved to comment and complain about it but never question it. It got to the point I had to use knee braces, a wrist brace, and eventually a cane. Even my parents said I was "suddenly sick" and "pretending" despite their years of seeing my body degrade in front of both of us. Something that was so alienating for me was when I finally used my cane at school and activities, and people I didn't even know said I was faking it despite only knowing me from a passing glance in hallways or sitting in the same area at the library. I wish I could apply the same love and gratefulness for my autism to my EDS. I wish I could find positive things about it without an overwhelming bitterness. I wish I didn't have the same inane distaste for EDS that I have observed abled bodied people have for me and others with invisible disabilities.
It took my partner years to finally get a referral to a geneticist to get an official diagnosis of hypermobile EDS. Just years of their time being wasted by doctors who honestly seemed as disinclined to cooperate as they did because it annoyed them that a patient had figured out on their own what was probably wrong, knew what the path to a proper diagnosis looked like, and was advocating for themselves to be put on that path. Not to diagnose themselves, but to merely be put in the hands of someone qualified to do so. The eye rolls and far too quick "absolutely not, theres no way you have that"s said it all. She was pissing them off and they didnt want to give her the satisfaction of entertaining her "hypochondria." Guess what the genetic test confirmed when they were finally allowed to get one? Even if youd known to go to a doctor, it probably still would have taken 36 years to get properly diagnosed because doctors, who are literally taught in medical school that malingerers and hypochondriacs are endemic and most of whom have never even heard of EDS, are often arrogant and petty.
I didn't figure out that I had autism. But once I started watching autism videos I figured out why I had been sick for 9 or 10 years: POTS. I got diagnosed with POTS. EDS fit too. The geneticist said that I probably have EDS but it is not worth diagnosing me with it. He refused to see me and told this to my PCP. He told my PCP to deal with things as they came up. What??
Thank goodness your time to talk is here and that you do it so well I’m 73 and diagnosed autistic last August and many years ago was treated as hyper mobile and have had so many fractured, broken bones and dislocations (why on earth wasn’t i sent for tests?) Haven’t found my voice yet but can listen to you and feel the affinity Thank you so much 😊 xxx
That sounds so awful :( I’m pretty glad that if anything on me is hyper mobile that it’s not very noticeable. Only thing I’m sure on is my pinky’s cause I can bend the tip of my pinky up further than it probably should.
This video was very cathartic to me. I also have that good old autism/POTS/EDS combo. All of them weren’t diagnosed until adulthood, and I have not only struggled to accept that I am disabled but to accept that others are always going to minimize my disability. Especially because I’m in my mid 20s. It was wonderful to see someone else talk about this and their lived experiences. I spent the whole video relating to all the “little” things you mentioned.
The part where you imitated people talking about how worse off disabled people are still able to contribute to society broke me down crying. It was almost word for word my own negative self talk. I'm neurodivergent with hEDS too, but also have a very rare sleep disorder that means my sleep cycles later and later everyday. I spent years just trying to handle a part time job for 3 days a week, but was spending the remaining 4 in bed unable to even think. I still doubt myself sometimes if I've felt particularly well for a few days, like maybe it's not as bad as all that and I should just try harder to function like everyone else. It never lasts though. Thank you so, so much for this video
I'm sorry to inform you, but delayed sleep phase syndrome isn't rare. I have it too. My circadian rhythm can go from waking up at noon to struggling to fall asleep at the witching hour. Sometimes I can go to 24 hours and still somewhat function. Yeah, my eyes burn, but I can't fall asleep unless I'm either medicated (my doctor gave me a mild sedative, it's stopped working as well), or awake for 30 hours. Even then. Everyone else's 10pm is 4-6am for me. And I need a minimum of 9 hours to be able to even think about writing a to do list for the day after to complete a third of one task. It's a truly horrible disorder, and it's so frustrating because so many NTs have told me "stop using your phone before bed", "don't drink coffee past 12pm", "exercise, go for a walk, it'll tire you out", "go to bed earlier". And what? Be in pain to the point where I have to take 4 ibuprofen just to drop it down to a 1 or 2? Stay up all night because I'm stressing about not falling asleep at 8-9pm? Not distract my ADHD mind that'll run the most destructive train line of thought imaginable? Yeah, works out real great.
I am disabled and, for me, one of the most frustrating things is the unpredictability, and my inability to get people in control of thing I need to understand it. I have an inhome care taker, and part of the program is a social worker visit monthly and a nurse eval yearly, and I find my self often having to either play up, or hide down my limitations in my day to day functioning. I tried to explain it once 'I don't need things all the time but I need all the things sometimes' If I present to incapacitated they could try to move me into out of home care, but if I present to able bodied they could decide I don't need care at all. The reality is I pay for my good days with bad weeks, sometimes I feel fine, I can do the things, that might or might not be followed by being chair bound for a week, but I still want to do the things when I can.
Really powerful video. I don’t have the same medical issues as you, but my neurodivergence and chronic pain have put me in similar gaslighty situations throughout my life. Thank you for making me feel less alone in that. Also, what a beautiful kitty, and such a wonderful purr!
The 'growing pains' brought back visceral memories. I remember sobbing in agony and my mum rubbing my legs trying to soothe me, but it didnt help, itd be hours of excruciating pain and then eventually itd fade. My mum took me to the doctors multiple times about my joints clicking, the leg pains, my constant sprains. They said 'growing pains'. It wasnt until i was 16 and was on a small hike, my hip just gave in and i couldnt walk without extreme pain. I was so embarrassed because i hadnt injured myself, i wasnt tired, my hip just stopped working. I was taken to a physio therapist and they did an exam and told me i had hyper mobility spectrum disorder but i didnt really know what that meant. I grew up very used to just getting hurt randomly and i pushed through it bc i was embarrassed. People would accuse me of faking injuries so i just told myself i must have been. Then at 25 came the Autism spectrum disorder diagnosis 😂 and it all linked up. Now i do similar to you and i have a routine before bed and in the morning where i have to stretch and prepare my body before using it. I also need to be conscious while walking that im not hyperextending, so that i dont pop a knee joint, or an ankle joint. As soon as it gets bad enough that i need to use a walking stick, I'm getting one. No shame. Dont care who judges me. I know ill need walking aids at some point, so when it comes im accepting it. Until then, i will try to use my body in ways that dont hurt me. ❤😂 Ps: people underestimate Pilates. 20 mins of Pilates will have a non disabled persons core shaking. Nevernind for us who's joints dont work lol. Pilates is really helpful for me when im able to do it, it genuinely makes my pain overall less severe day to day. ❤
It's really sad that there's going to be some of those anti-disability people watching who recognize every single one of your symptoms, but are only going to use that to invalidate you. 'I have that too, so you are definitely not disabled, pfff', without realizing that they too deserve sympathy and adequate health care
My mum was also a nurse. Now at 41 I’ve been diagnosed with ADHD and Autism. I’ve heard so many of those things you mention and I just wanna cry and be bitter about it.
As a fellow EDS-haver and autist this video made me cry. I've been in an uphill battle for months to access disability supports in my country and I have been feeling like I'm being gaslit around every corner while my life shrinks to the four walls of my room. Thank you for voicing and articulating these thoughts, it made me feel so seen.
Thank you for your work ! Disability goes beyond inability, and pain is disabling. I found out the hard way that deconditioning will mess up even a mildly hypermobile person during a pretty rough patch of the lockdown. I went from little to no joint pain and only party trick subluxations to having my shoulders pop from sitting too hard on the couch or carrying a shopping bag. Turns out muscles are the only thing holding some us together 😬
I relate to this. I was pregnant during the later part of the pandemic, and I’ve been constantly in pain before that. But my pregnancy was hard and made a lot of things worse. I didn’t move much during my pregnancy. After giving birth, now my hips are moving out of place and popping constantly. I thought it was just my scoliosis and lack of exercise, but the older I get, the more my joints pop and crack and hurt, and I’ve been considering EDS for that reason (plus a number of other symptoms that I’ve identified). A lot of this video resonates with me. I don’t know if it’s EDS or something else, but I’m hoping to find out whatever it is this year.
Re: The Rarity of EDS Obviously this is just anecdote, but I am one of those people convinced that it's NOT a super rare condition. The estimates I see put it at 1 in 10,000 people at the very, very most. I fairly regularly meet people with EDS. Recently I met three in one day. I am not a very social person. (This was before I started actively looking for people to talk about the condition with, of course)
I didn't know until my 40s that not everyone hates going to a busy shopping center. I thought everyone thought it was too chaotic, too loud, too random, too bright and it did everyone's head in, so they want to get out of there asap. One day I asked me partner and she said it didn't bother her at all and I thought she was unique. Then I found out it was my experience that was more unique. I'd misunderstood that most people don't like the inconvenience of it all when it's busy, but they don't find it intense like I do.
Huh, I didn’t know that either. Even after reading your comment I still think that most people think it’s too much… maybe not 90% but at least 60% right?? Idk!
@@emmanarotzky6565 it depends on what too much means. For some that is just annoyance, for others it's full on overload, brain shutdown and fight or flight.
As someone with EDS, POTS, and autism, it always feels validating and good to hear somebody talk about their own personal experiences with it all. Thank you so much for making this video, it's really good.
Be on the lookout for MCAS, too.... these syndromes tend to run in packs. I still don't have official diagnoses for half of my stuff, mostly because there just aren't doctors who know enough about EDS (especially hypermobile type, because of the lack of a known genetic marker) to feel comfortable doing the clinical diagnosis, or even MCAS. I test high enough on PTSD screening, just from medical trauma. I have had MCAS and POTS symptoms since age 12 - but didn't figure out POTS until age 31 when it became disabling enough to send me to the ER multiple times per month for 2 months. I would never have known that I have been experiencing migraine my whole life if the algorithm hadn't steered me towards YTers with complex migraine and my therapist telling me point blank: that is not normal, you need to tell your neurologist. I was having migraine for about 20 days per month - I just thought I had a lot of headaches and had no idea that vertigo, brain fog, light sensitivity, and discoordination was related. MCAS has been the hardest to figure out, especially when it's hard to get a baseline because it's always flaring up. A low histamine diet has helped some though.
@@coda3223 Awesome story Coda, I'm sharing the same path right now. How are you these days? Just in case it helps you.... seem to be reversing my MCAS/POTS/EvErYtHiNg else on my (somewhat self-developed) low histamine/oxalate/carb/AIP informed Cannes e Voor diet.
I hope my mom watches this video. I sent her a link, it connected everything in my mind from my uncle having reynauds syndrome and joint issues and papery see through skin to my entire family having intermittent joint problems the saggy jowls that everyone develops in my family mom’s gerd and varicose veins and muscle cramps and spasms, the papery stretch marks the painful muscle cramps see through skin as well as my gum recession and easy bruising, everything fits but I don’t know if this will convince her to consider it, because “I know someone who has that and it’s different for them, anyways it’s incredibly rare.” I hope that she comes into watching this one video with an open mind and without preconceived ideas of what EDS is and what it means to be disabled.
I have autism and hypermobility, both late diagnoses (when I was 28 and 32 years old, respectively), so I felt a lot of this video. Like in a literal sense too, as it made me very aware of my joints. The absolute level of dismissal I've experienced over my life because of these things is staggering. I still feel like I'm not getting adequate care, like such a thing just doesn't even exist. Thank you for making this video!
I have autism and also have almost every symptom mentioned in the video, this was actually picked up as a child, but they put it down to a nonspecific "motor learning disability" that was claimed to just be a symptom of my autism rather than investigate further. Maybe I should get tested?
you're such a great person. I truly care about you even though we've never met. your story moves me so deeply. I have ME/CFS, and was gaslit for 9 years into pushing myself effectively making my baseline worse. Noone understands the struggle. Im pretty much housebound, spend 23 hours a day in bed. I wish life was different for us.
Partner of a woman with EDS, this was a fantastic video and I can confirm that she’s had much of the same experience with this. One thing that’s very interesting is the whole being fit as a child/teen/young adult and then having a period of inactivity and the EDS symptoms coming in full force. She had this happen through external factors because her other conditions made her ill and unable to do much activity, so by the time those were under control, the EDS and POTS were hitting hard. We thought that perhaps some steroid induced Cushing’s Syndrome had brought it on, but it sounds like it only happened indirectly, and her previous good fitness was masking some of the most severe EDS and POTS. Because yeah, it shocked me that she was way more fit than I was when we met, doing pilates and other exercise, and yet when she started getting sick, she couldn’t make it through a mild/medium hike that I was handling despite being pretty sedentary. This is a shitty disability to have and made infinitely harder by the lack of awareness for people who have it, the people around them, and even the doctors who are supposed to help. And she caught it pretty early, fought through the brainwashing saying it’s just normal, and found doctors to believe her, and it was still the hardest thing to go through that I’ve ever seen. Thank you for making this video. I’m tempted to share it with the people who doubt or don’t understand her conditions…
Additionally, having a system to not be in pain is also not a thing most people have “Well I don't get joint pain if I lay down all day instead of doing such strenuous activities as.. standing... and sitting” is not what most able-bodied people would say
Rewatching this video because the first time made me sob. It felt like you were describing my life exactly. The counselor said it's "just depression" today again.
I have hEDS, CPTSD, adhd, suspected autism, endometriosis, and I just got diagnosed with POTS. I am 29, and I was undiagnosed until 27. I’m currently 9 minutes in and it’s jarring how everything you’ve said so far is exactly how I felt until I hit my breaking point because I couldn’t do anything and was in absolute crisis. And that I am now significantly more disabled than I would’ve been had I gotten treatment before I had become so fucking ill that the choice was either treatment or dying.
The amount of time I’ve said fuck out loud to myself in the first 15 minutes because I feel and experience 97% of the things you mentioned …..oh boy. I’m scared.
It took me 37 years to get diagnosed with EDS; something I've lived with since the day I was born. I truly feel your pain. I'm sorry for the both of us. So many similarities
I remember talking to my therapist about my pain. How I constantly need to sit and rest during walks because it feels like there's shards of metal in my joints, how since childhood I've been kept up at night with unending pain, how my joints crack and pop so loud all the time that people hear me coming through closed doors. I have no idea what it could be, though I definitely stretch in ways I shouldn’t be able to and can feel my joints pop in and out of place. I was just worried something's wrong and was sick of the exhaustion dealing with the pain brings. She told me it was just psychosomatic. I don't have the confidence (or money) to try asking a doctor to take me seriously. Had to quit my last job because the stress was destroying me. I had diarrhea between 8-12 times a day, more than my usual 3-5 times, and I was laying awake for 3-6 hours at night in pain from working a retail job. Me being autistic makes people doubt that anything more could be wrong with me, in my experience.
I was diagnosed with EDS in my 40s (after years of being certain had a connective tissue disorder), and atraumatic fractures in my spine mid 30s. And everything you've described. And seen dozens of doctors and specialists and emergency department staff and allied health professionals. For me, everyone minimised my pain or injury or abnormality; so I did too. Even having dozens of pneumothorax with lung collapse in my 20s, that was just a weird anomaly. Even that my brother had collapsed lung at same time, was pure coincidence. Especially when had collapsed lung, fracture and dislocation at the same ED visit. Coincidence. I learned about EDS myself, when investigating if Marfans existed in my dad's family, after spinal fracture. I self diagnosed. Collated medical evidence. Visited a physio who "wrote the book" and is more educated about EDS than most specialists in my country, she said "yeah you're right, you almost definitely have EDS, if you don't I'm going back to uni to relearn everything. " I found a GP to refer me, waited over 3yrs to see a rheumatologist. Finally got diagnosed. Asked why I'd waited so long.
OMG this video helped me feel so validated. The whole "How did you NOT know?" thing made me feel like I was overly sensitive and fragile, because I DID know, but no one else cared, just like what you said. Thank you for posting this video.
There's so much overlap of life experience here with me. I have a systemic nerve disorder and a pretty severe case of CFS. Not EDS, but so many experiences here are 1:1 for me. As are the excuses heard. And that I told myself. I had a freakout a couple years ago when I realized I didn't know what being comfortable was like. Universally the response to any of my issues was, "Yeah. That's weird. No we're not going to do anything to help you. Here are some anti-depressants. Exercise more." Nevermind that going out just three days in a row, one time, with my friends? It caused me to be unconscious 22 hours a day, gradually improving over the course of three *weeks*. I'm not super active, but more so than anyone else here that doesn't have my issues... but I still get told to exercise more. Frickin'. How. And tests always showed nothing. I was just weak. And pathetic. And exercise will solve everything. I promise. The fact it damn near sends me into a coma every time I try is just me giving up at the first hurdle. Our culture towards disabled people is so, so harmful. Anyways. Thanks for making me feel seen. 🍀
Wow, this episode hit home for me. Even in my mid-20s, I honestly thought I was a "wuss" when it comes to pain, and that I was lazy because I always wanted to sit down instead of standing around like all the other adults around me. I distinctly remember when I was a child asking my Mum "Why do I get so many bruises on my legs? I don't know how I got them.", only for her respond "Don't worry, that's normal. I get them too- see?". We had a house rule that us kids had to go to the toilet before getting on the trampoline because otherwise someone would have an accident. My hands and feet would always be hurting, but that was just me making a fuss- my sister has REAL health issues because she gets migraines. To this day, I still get a trauma response to the phrases "Suck it up, princess!" and "Build a bridge (and get over it)!" that were such a mantra for my childhood. It wasn't until I met my now wife in my mid 20s that I learnt for the first time just how strange my body was. How most people can't just swing their foot on to the vanity to dry their leg. That "just having flat feet" should not make my back, hips, knees and ankles ache if I walk for more than 10 minutes or so. It was only after years of pushing my medical professionals to investigate one thing after another, to be referred on to specialist after specialist, that I finally had a rheumatologist I was "just hypermobile". One the way home from that appointment, my Googling about hypermobility came up with Wikipedia's "See also: Ehlers-Danlos Syndrome" link, and my life changed forever. I quite literally got lightheaded as I read that article and even missed my bus stop because I was transfixed on my phone. Everything clicked in to place. Suddenly so many things in my life that I thought were normal, were not. I had spent my childhood in a family that acted as a medical symptom echo-chamber. We all got excessive bruises and sensitive bladders, so that was normal for us. What we didn't realise was that we all have the same underlying genetics, even if some of us were more affected than other. We now realise that my mum and two of my sisters have mild EDS that is recognisable, but not disabling for them, even if it is disabling for myself and one other sister. I still sometimes chuckle that I self-diagnosed myself with EDS about 20 minutes after a specialist doctor told me I was "just hypermobile", but I really shouldn't. It shouldn't have taken me a FURTHER FOUR YEARS of pushing for referrals to geneticists and specialists to officially get diagnosed, and another seven years still to be diagnosed with Autism and ADHD. I shouldn't had needed to beg for these diagnoses to access carers, medications, pain management, splints and compression garments. I shouldn't have needed to purchase my own crutches and (not one, but TWO) wheelchairs because the system said that I was not disabled enough. I shouldn't need to decline hearing aids that I need to keep children safe in my workplace because I don't have "a sufficient level of hearing loss". Sorry for the trauma dump here. You video really opened up a can of worms for me. I guess the system is pretty much the same, even over here in Australia.
I began crying at 46 minutes. ‘When you become a teenager your joints will stiffen up’ is the exact thing I was told as a child going to the doctor for my hyper-mobility. It’s gotten considerably worse ever since and I’ve always thought that I have EDS but I guilt and distrust myself that I don’t have it and that I just have bad hyper-mobility. I’m 20 now, I haven’t gone to the doctors since I was around 13, my ankles colapse constantly and I can’t walk more than 30 minutes but I’m so afraid to go back through the medical gaslighting that was so normal for me as a child.
Thank you for making this video. I've been grappling with the same concept the last few weeks; I was always disabled, but I didn't always know it. I'm one of those souls who went through decades of this dismissal by my family, my doctors, and worst of all myself. I could pretend I wasn't disabled by acting as though I wasn't disabled. All this self-blame you catalogued is baked into the culture, after all. But if you're hypermobile, that effort comes with a toll that able-bodied folk don't have to pay, and you literally fall apart internally. I got to a certain point in my life where all my doctors started taking me seriously, and there was something oddly alarming about that. We got the hypermobility figured out eventually, but not until I was well into my 40s. For most of my life I walked about 10k a day. Now my foot is literally held together by half a dozen screws, and (I shit you not) it needs more screws, so managing to get to the bathroom and back is an accomplishment. Living this way is quite draining. But minus the mobility aids, I look pretty healthy from the outside, so some people won't ever understand.
I don't think I have any physical disabilities or chronic pain, unless you count the injuries I suffered from meltdowns. Regardless, saw a presentation on the autism research institute that we're "the lost generation" of disabled people, which spans gen-z all the way up through the silent generation and posthumously. It really fucked us over. I'm 39 and finding out I'm at the nexus of adhd, asd, and ocd has been a whirlwind and kinda shocking. All that had to happen was reframing "tantrums" as "autistic meltdowns", or "social anxiety" (that haunts me even when I'm not socializing) as "obsessions" and my need for reassurance or to "check" the past interactions as "compulsions"; spaciness or slower to get directions as "disabled first working memory". It's mind-blowing. How much self blame, people blaming me, treating me like I'm not doing enough... So much to take in. My ocd comes out when I write comments, I can't leave any stone unturned, every caveat explored... it is exhausting, so sorry for word vomiting.
My daughter is gen-Alpha, and was in Head Start, Pre-K Counts, Early Intervention, and public kindergarten all with zero effort to get her a diagnosis. She just kept qualifying (or not, in one case) for speech and, later, speech AND occupational therapies! It wasn’t until I took her to a university and private psychologist and she got ADHD-PI, autism, AND dyslexia diagnoses that a school psychologist (at her private school, because she was having increasingly frequent meltdowns at public kindergarten) took notice and re-diagnosed her ADHD-PI/autistic! Apparently public schools and Medicaid won’t test for specific learning disabilities until a child is 8?!?! 🤨 All this by way of saying, not sure this is any better, even now, beyond it being possible to diagnose ADHD and autism in the same person! 🫠
@@misspat7555 ADHD and Autism not being exclusive is one thing, but another improvement is that girls / kids assigned female can actually get more readily diagnosed now. I see among younger professionals that they no longer think an autistic child is a boy who likes trains and _maybe_ there'll be a girl once a dozen. It is better now and it will continue to get better (barring reactionary legislation, I suppose)
I'm only 9 minutes in, and I have to admit that as a disabled person, this video is really hard to watch. Not because it's bad, not at all, but because it's SO accurate. I spent so many years believing that I was lazy, had no willpower, and was overly sensitive. I just needed to work out more, learn to deal with 'discomfort', and lose some weight. I just wasn't trying hard enough. Because every time I expressed that I was struggling with something, these were the messages I got. Even doctors didn't take me seriously for a very long time. I still struggle with impostor syndrome to some extent to this day, although it's gotten much better thanks to a lot of hard work, therapy, and a loving partner who understands me. It's such a sadly common experience for disabled people to spend a long time blaming themselves and being judged for things that are ultimately out of their control (and hurt them much more than anyone else). The symptoms of our disabilities are often seen as flaws in our characters, and assumed to be a result of personal choices rather than circumstances outside of our control.
If you were offered an antidepressant, it might have been an SNRI, not an SSRI, because norepinephrine is one of the three hormones most often associated with pain management. The SNRI Duloxetine (Cymalta) helps me with pain, especially rib pain. PSA for anyone taking antidepressants: If you find yourself getting increasingly hostile, reactive, or otherwise unwell, check with your provider, who may adjust your dose. Especially as we grow older, these medications can help us retain too much serotonin, leading to serotonin syndrome (serotonin toxicity).
three minutes in, and I am relating to almost everything you said so far. The joys of super soft see-through skin... and the heaps of stretch marks despite having been perfectly average weight without big fluctuation all my life. + the bruises! I was assessed for blood coagulation issues because I bruise so easily, but if anything, my coagulation is better than average. The issue with trying for assessment with things like EDS is that it's always "yes, I am in pain - but it's all just aches and pains occasionally (every day), but I'll just sound as if I'm whining if I bring it up"
I got a similar attitude from a rheumatologist who was pretty clueless about EDS. I think the problem with rheumatologists is they seem to think it only effects the joints.
i got this, too. i was also told that it must be fibro instead despite bringing diagnostic criteria paperwork and telling them about my mum's own experience and journey w getting diagnosed, but was dismissed lol. i'm exhausted
Same same same. When I got seriously disabled I realised i was always lightly disabled i just didnt know i had "pre existing conditions". Now I'm in a wheelchair, wish id known sooner that i was "clinically vulnerable" and now it's too late. FAO younger autistic people - things can always get worse
I hard relate to all you said. I finally got my AUDHD diagnosis at 51, HEDS last year. I’ve been living in pain since age 11. I have scoliosis and kyphosis. And was told that my pain was because of my bad posture, my fault. So I stopped talking about it. The pain is now Fibromyalgia. Getting out of bed takes effort because I have to brace for the searing pain when my feet first hit the floor. During flare ups it’s even worse. Gabapentin didn’t work for me and gave me narcolepsy like symptoms. I’m so used to pain that I have developed such high pain tolerance that when I broke my sacrum (spontaneously… that’s normal 😢) I walked on it for months before someone suggested an MRI. I could go on.
I relate to basically every single thing you've said! I'm not diagnosed with EDS and I'm seriously starting to think maybe I should start asking doctors about it. I can bend my fingers way back farther than most people. I can ALWAYS get out of handcuffs unless you put them on so tight they cut into my skin. I always have mystery bruises. A guy that sat next to me in a class in high school used to like to play with my hand because it was so "squishy" and soft. I was always the slowest runner in gym class, by far. I have IBS. And there's more I relate to but this is just amazing, really eye opening for me. I'm going to look into this more.
I am Going Through It™️ right now, and I feel pretty hopeless about getting the care I need. I think my rheumatologist ruled out EDS, but I related to everything you described. Bc of my neurodivergency, I struggle to understand which things "are so normal they go unspoken" versus things that I experience that most "normal" people don't. For example, when I had menstrual cramps starting with my first period, I was told that "everyone feels that way" and that I was "being a baby". But when, at age 38, I gave birth after 48+ hours of labor, unmedicated, I had no idea that I was about to have my baby. (Thankfully I was at the hospital and was being monitored and my nurse sprang into action.) The reason I didn't know: at no point in labor did I feel anything that reached the pain level of my "normal" period pain.
This is the most relatable video I have ever seen. I had almost exactly the same experience, except doctors gaslit me from childhood. Thank you so much for making this!
THANK YOU. I'm also a late diagnosed autistic with hEDS and our life experiences match up in maaaany ways. The medical trauma is also real. We need these awareness videos!
7:20 Okay… I’ll go get diagnosed. I’m convinced. Everything up until this point applied but I was still in denial. But Im heavily modified wearing a back brace and compression gloves daily at the age of 24. I kept telling myself it was the mattress in the dorm in undergrad but I graduated two years ago.
Got my hEDS diagnosis this year after six years of being hand-waved by my GP because I tested negative for lupus. The first rheumatologist I saw "diagnosed me" with something similar to fibromyalgia, despite me repeatedly explaining my high pain tolerance (to the point of sitting through a tooth filling when the anasthetic had all but worn off). She told me to stop taking my pain medicine. The day after I stopped taking my pain medicine I had to leave class to go home and lie down for several hours because of the pain I was in.
It might be irrelevant, but my whole family has EDS, and two of them are basically immune to certain dental freezing. It might be a factor in your dental story. I seem to be lucky in this regard, but it wearing off to early happens to almost everyone else in my family.
ThankYOU for making this video, i have spent the last 10 years trying to raise the possibility with physios and my GP and kept getting told "oh no you couldn't possibly have that" followed by outdated nonsense. Watching this made me go "that's ME" over and over throughout gave me the push I needed to insist on a referral, and, well, here we are now ❤🦓
Everything you described about pains and tiredness and joints is what I experience but it's the first time I hear that it shouldn't be this way.... They found heart issues but said I'm too young so it's probably nothing and dismissed my worry about the reasons. I thought my stomachaches for no reason and me not being able to stand/hold things were issues from passive self harm and my fault. (Parents used to punish me by making me stand in the corner but they had to give me a chair because otherwise i started to cry from pain). Doctors just said that every issue I have is psychosomatic and bad routine because I was a teenager when I still tried to ask for help. I stopped trying. I don't know what to do. I'm autistic and horrified at the idea of telling a doctor I, a young person, think have a serious issue. They laughed at me even when I showed them THEIR words on my test results and asked "should I get tested for this?"
Addition: i think you won't see this but want to say a big thank you for this amazing video. And... For probably explaining a big part of my life to me. I don't know if i have EDS and scared to try and get a diagnosis because no job wants a disabled person, but I think the self discovery I made from this video is important either way.
This could not have come up at a better time in my Recommended feed. I literally had my DWP PIP appeal yesterday. While the panel acknowledged that the DWP should have given me *some* points, they still didn't award me enough to qualify for PIP. That's nearly 20 months of my life fighting for this that I will never get back. I too was late diagnosed with autism (age 31 after 14 months of fighting), adhd (age 35, thankfully with minimal fight), and fibromyalgia (age 38 after six years of fighting) and a formal identification of flat feet at the same time (no, really), with longstanding migraines, depression, anxiety and self-identified complex ptsd. After the outcome of my appeal yesterday, I broke down. I hope that those three people on that panel heard my cries through the door, as they completely dismissed everything that I was saying and made their own presumptuous conclusions. I don't know that I have any fight left in me. 😞
I never thought of myself as hypermobile, but I now recognize a lot of these things as describing me. That is, I'm not THAT flexible; moreso when I was younger. I could bend my thumb down to touch the inside of my wrists, pushing with the other thumb; but I knew people who could do that in the opposite direction: touch the back of the wrist. One of my thumbs is double jointed. Because I'm holding my phone with it, that thumb is now bent concave at the joint where it meets the hand. I was "clumsy," and had a LOT of sprained ankles, but no bone breaks. No dislocations, although in my 30s, I did occasionally have a painful "catch" in my hip socket (remarkably similar to a dislocation in retrospect.) I have "noisy" ears, "thick" ears.... I'm on 2 heart rhythm meds AND Xanax. Oh, and now I have osteo arthritis, so that changes my entire symptomology.... I have relatives who had frequent dislocations as children. I do believe they have EDS. One of them has sudden surges in heart rate; they know they definitely have MTHFR. Metaphor: when I was very young, I had an old bicycle; it had a small pedal radius, oxidized moving parts, and tires that were short and thick. Needless to say, it was teeth-grittingly difficult to ride. That's the sort of body I live in. It moves slower, it struggles against a lot of resistance, and the parts don't work well together. I hated PE/PhysEd from kindergarten on. Everything hurt my muscles; everything made me pant and puff. I thought it was asthma. Or asthma and being out of shape. I knew I wasn't lazy, but no one else seemed to agree. And though I didn't know it then, I was autistic. Life in general never made much sense to me. I didn't know anything to do to help myself if it involved getting help from other people. They...didn't, mostly. I'm a noisy self-advocate now. And I do a lot of research. Now I get to add hypermobility to my list of things to study.
it's super weird hearing nearly exactly my childhood in your accent. tho my mom was a nurse's aide and still had the same "oh it's nothing" about everything.
I’ve had a youth of suffering, just as lengthy a list of symptoms. So much so I started studying osteopathy. I was treated like a hypochondriac by everyone until well after I lost the ability to walk. I changed course and I’m on my way to becoming a physiotherapist, my main interest is EDS and Chronic pain. Thank you for speaking to this topic. I feel you.
One time I lost the sight in my bad eye, and didn't think to go to an optometrist for three days. It took a drunk friend pointing out my eye looked milky white, like I had cataracts, on the third night. I say bad eye, because I'd just grown used to accepting that it was normal ,for me, not to see very well out of either eye, but especially the left. Also hearing the "oh bad posture" etc, reminds me of the years of "reading in poor light is bad for you"/"reading with a book too close to your face is bad for you". I have light sensitivity, as such that I get dizzy and disorientated if I go from a dark building to broad daylight. And yes being in a well lit room for a normal sighted person hurts my eyes, and gives me bad head aches.
I have EDS too. Everything you said in this video is absolutely spot on, I’ve gone through the exact same thought process and heard the same things from my parents and others. My three daughters all have EDS too. My youngest has been given extra support and help through school and college and my mother told her to stop saying she’s disabled as she’s not that bad and not properly disabled. Needless to say, she doesn’t have EDs.
I only watched to 3:41, but literally all of the things you describe I have - double jointed, popping joints, NIGHTMARISH PE classes where everyone would mock how I run or how I can't do anything other people do, soft skin, my mom making fun of my crooked bones or posture etc etc.
The issue of not knowing that a period of reduced activity can result in major degradation of quality of life is huge and so rarely discussed. I never knew I was hyper mobile until a relatively minor knee injury combined with a family emergency reduced my activity level for a year and I came out the other side feeling 20 years older. I really wish I had known.
I'm a seemingly less common example of a "middle functioning" disabled person in the sense that it was pretty obvious from a young age there was something wrong with me but I didn't get diagnosed until late childhood/early adulthood. I was delayed in development and required a lot of support in certain areas but I was also a hyperlexic gifted child so I didn't crash until middle school. At 12 I needed to be homeschooled due to anxiety and sleep issues, at 14 I was semi bed ridden due to orthostatic hypotension. I was diagnosed with autism at 18 and with EDS at 25. Before that I had a whole bunch of other, more minor diagnoses. I never got evaluated for disability status despite clearly needing a lot of support. The reason? Everyone, including doctors, told me that if I would get a label like autistic or disabled, my life would be over. I wouldn't get into uni, I would never have a job, and I would probably end up institutionalised. I was told it was better to struggle without the label than get accommodations and support with it. So I pushed myself till breaking point, multiple times, and I still have a lot of internalised ableism to unlearn. Sometimes everyone knows you're disabled but they just won't tell it to you cause they think acknowledging that is paramount to a kind of death. Unfortunately that sometimes leads to actual death.
I move in ME/CFS and POTS spaces, so I knew about EDS, but hearing your description really got me thinking. Many things sounded like you were describing my childhood and my believes about my body. "Everybody else is able to do it, so they must exercise more than me" "I must have bad posture, that's the cause of all my upper spine problems" "I am just pain sensitive and should learn to suck it up" "I really need to crack my neck to relieve the tension, but people find the sound disgusting so I will wait in pain for a little longer" Now the big question is how to bring it up to a GP that's already annoyed by my general zebraness?
During school I'd sometimes cry from period pain, I'd most be ignored because I'd also cry due to anxiety and sensory overload and I'd refuse the offer of a paracetamol and a lie down because I had no way to catch up on whatever I missed.
One of the issues I run into with people's misunderstanding of EDS is the fact that it isn't just one thing. It's actually a group of congenital conditions based on the mutations of genes that code for how connective tissue is built in the body. So, while connective tissue is 'everything soft' (kind of), not everyone with EDS will experience symptoms related to all of their connective tissues. My father died at the age of 32 as a result of complications of vascular EDS (vEDS, known as type 4 at the time). Before him, there was no family history. I don't know how the likelihood of transmission works for other types, but from the last conversation I had with a geneticist (so, so long ago), my risk of having it was 50% (plus the baseline rate for random mutation). As a dominant trait, I wouldn't be a carrier without suffering from it; if I had it, it was going to play a role in my death, whether that was due to organ rupture, internal bleeding, etc. that was either spontaneous or brought on by some instance of physical trauma. I never went back to get tested, but I knew the symptoms in detail. A few years ago, I made it past the "should have seen something by now" point, and my family let out a breath we'd all been holding, figuratively speaking. But, throughout my life, I've had many people explain to me what I would be experiencing if I DID have EDS, and their descriptions were all based on a fundamental misunderstanding of the different types. Not only that, though; their understanding was centered on only the most *extreme* presentation of *one symptom* of the *most common* type, and required that EDS was only present if visible, i.e., if someone were wheelchair bound. It was legitimately painful to think back on all of the suffering my father went through, the ruptured aneurisms and hospital stays that punctuated periods of full mobility and no obvious symptoms, and listen to these ignorant people suggest that he was somehow... what? Faking it to game the system? Lying to garner sympathy? I'm probably preaching to the choir, but I would ask that anyone checks their knowledge of a particular medical topic before speaking to an experience that isn't theirs (and, even if they do have experience, not assuming that theirs is the only experience).
OMG, this. "You're just lazy." "You just need to be in better shape!" Between my undiagnosed (until my late 40s) autism, my thyroid issues and hypermobility (afaik, it's not EDS), I have decided to just celebrate whatever wins I manage to claw my way into.
I'm only 10 mins in but as somebody who is 36 and has discovered they have hEDS / MCAS / POTS / ADHD / Celiac in their recent adulthood I am crying 😭 My (self) stretched lobes healed so well when I took them out you can't even tell I had them at a 0 at one point
I recently got in to a specialized EDS clinic for specific support with people who really understand and can refer me to others with the EDS context who understand that.... all of my problems are related to one genetic issue, not a bunch of random symptoms
"I was prescribed xanax, never took em" You dodged a bullet, I did and completely ruined half a year of my life. Withdrawals are hell and doctors can get you on benzos but will not help you get off. I just barely got into a rehab facility which got me off finally but was left with symptoms that still last today.
idk if i'm gonna be able to make it through this video bc i'm 5 minutes in and might cry. i wish my experiences were unique, it's not really comforting to know i'm not alone it's just sad that other people have suffered just like me.
It has taken me decades to learn that what I thought was normal wasn't. It's like hiking with a 150lb backpack while everyone else had a little hand bag. Yeah you can still walk but it ain't easy. I have hypermobility...don't know if it's full blown EDS. But so many of these symptoms. Ugh. Esp the stomach and hand problems. Even holding a coffee cup for too long hurts. Puts painful pressure on my joints.
Its crazy how much people resist believing it could be a deeper issue and just tell you to write it off, quit whining, stop being lazy, etc. This happens for sooo many issues but its so terrible for certain conditions.
my friend has EDS and while he was starting to figure that out i started to talk about my i now know symptoms. and I would bring them up casually right like its just a friday nothing new here. I remember the day he took my shoulders and looked in my eyes and asked "You know not everyone is always in pain, right? You aren't suppose to always be in pain." he changed my life in just that sentence, because i didnt know, i just thought i was weak, and everyone else handed it better than me. I now know i also have EDS.
I’ve never heard of someone else with neck subluxation like mine till you. I have so many childhood memories of turning my neck to fast. Feeling that dreaded pop, and being immersed in sharp cramping pain that spidered across one side of my skull for 20-30 secs of agony before it would subside. Doctors shrugged it off. My mom witnessed a few and would rub my back, but didn’t seem worried. It gave me years of anxiety till I learned to always turn my head slower. Now I can go a year or more with experiencing it. Occasionally I’ll get surprised, turn to quick, and have a reminder. I still get terrible tension headaches at the base of my skull. Thanks for helping us be seen❤
I'm halfway through and need to take a break to emotionally regulate, so I haven't finished yet. This video made me feel so seen and reopened so many emotional wounds from being dismissed all my life. I'm currently diagnosed with hymermobilty, but I definitely have hEDS and am struggling to keep myself motivated to keep advocating myself. This video is so helpful to keep myself going. The line, "There would be things that you simply cannot do no matter how hard you try. You're not even trying, are you?" Hit me to my core.
It took me 12 years to get my hEDS diagnosis from just the start of me asking about it, NOT the start when all my pain and joint issues and heart issues began but when I LEARNED ABOUT EDS. I had an injury around 11 that I never have come back from, and my 20s have been doctors insisting I destroy my joint more instead of a wheelchair until just last year. Everything can feel like its against us in this diagnosis or with rare diagnosis in general, thank you so much for this video I really truly hope that the people who need to see this do find it.
This video hit me hard. I've spent my whole childhood with severe chronic migraines and digestive issues that constantly sent me to the ER, but no parent or doctor thought to look into it. Nobody ever thought me being bedridden for half the week (sometimes a full week or two) in constant pain and vomiting, was an issue. I was seen as making it up to avoid school, so I was still forced to go to school and collapse there. My grades were awful because the brain fog from my migraines was constant, I couldn't sleep from being in non-stop agony, and I hadn't known I had ADHD and autism, but I was scolded for being lazy. I'd end up in the ER over and over because of gastrointestinal issues, and my parents just laughed it off because gastrointestinal problems are funny despite the situations being reoccurring life-threatening medical emergencies. They insisted it was normal for this to happen because I don't eat enough rice or exercise enough or whatever. I'd spent my childhood truly believing I really was just a lazy person for being tired all the time. Everyone told me nothing was medically wrong with me, I was just lazy, so I believed it. I only started getting diagnosed in my mid-twenties. Getting finally diagnosed after years of gaslighting, I felt...relieved but also so, so angry. I've been seen by multiple ER doctors and specialists and have had surgeries on my intestines but no doctor thought there was an issue. Even with all the medical documented proof of my conditions, new doctors will refuse to believe them over arbitrary reasons ("You can't have gastroparesis because one of the symptoms is being underweight, and you're not underweight." "Migraines? You look fine to me right now." Those sorts of things.) I've had a doctor put me on a diet insisting would help my medical issues, only it made them significantly worse and landed me in the ER more frequently than before. When I told him, he brushed me off and just praised me for 'losing weight and looking nicer' which turned out to be his whole reason for putting me on that diet (I was not overweight. And even if I was, that's not an excuse for deliberately putting me on a diet that he knew would exacerbate my symptoms). People don't believe I have disabilities because I have a full-time job. I'm FORCED to have a full-time job because I need to afford to feed myself and pay for medical expenses. Disability rights are garbage where I live.
As an autistic and ADHD, very likely HEDS person who presents female, I felt all of this to my core. All of those gaslighty comments that people make really played a number on me over the years ("it's not that you can't, but that you won't" takes the cake). After I discovered all of these things (on my own, as no medical professional would even look at me sideways because "I look healthy" to them - yay for masking), it took years of introspection to reduce the amount of internalized ableism that has accumulated over the decades. I'm glad you finally found your answers. I hope you can also find some support. I know I won't have any, other than what I can build myself not, but at least you and a few more folks I hope do get the support and understanding you need.
My gods... While my experience wasn't identical, it follows so closely in the pattern it was like someone who is somewhat aware of my life, reading it back to me... I'm not hypermobile nor is my skin stretchy... Which is why EDS was ruled out for me when I tried to get my constant pain diagnosed. Ended up with a Fibromyalgia diagnosis... But with even having experienced that "sit still for a while and completely fall apart" last year. Having struggled all winter relearning how to even just walk after a particularly rough depressive and stress spell made me bed-bound for 6 months... I think I need to give EDS another look. Cause yeah it sure seems there's more broken in my body than just the nerves being dialled up... Thank you for this video. It's made me feel so much less alone...
I've learned EDS doesn't have to have hypermobility (I mean, it's literally a subtype, hEDS). Because I also don't have it - but I also have nothing diagnosed. Except muscle hypotonia. I don't know how much that explains on its own. Considering how much I read about it the last year, I'm just assuming there's something with the connective tissue, but what exactly, I do not know.
Mitochondrial myopathy here. I have a lot of similar symptoms - and am classified as disabled. I was a part-time wheelchair user as a kid. And the self-loathing, the body-shaming (even at my tiny size), the imposter syndrome, the feeling that everyone else must just be more driven, more motivated… So. Familiar. You really touched me with this video, Ponderful - it’s comforting to know that this unique feeling of being “not disabled enough for anyone, including yourself, to understand” but also “too disabled for ableist society” is not entirely unique at all.
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I just showed this to my wife, who I've been badgering to go to the GP to be assessed for EDS for MONTHS. She literally had EVERY symptom you mentioned. She's agreed to ring the doctors, FINALLY
The EDS society provides online diagnostic checklists that might be useful for her.
@PonderfulYT just over a year ago I learned a bit about EDS from a friend who I knew with it, and the more I looked, the more I realised all of these many things even eerily closely described in this video intro were reminiscent of my childhood and especially early 20s, still amplifying as I approach 25. And I looked into it with a doctor, with zero medical records because my Mum never really took me, and they just left it at "you don't have any family history of this (family doesn't really visit doctors) and aren't experiencing obvious severe physical disabilities by it so we can't do anything"
So that's where I am now. Knowing I may well have a degenerative disorder, but having to be careful and jot take risks, and wait until it degenerates enough to actually be sent for testing 🙃
Like, I managed to accidentally cut my knee with a craft knife 3 months ago to a degree that I was told "Doesn't need stitches and is dramatic to be struggling to walk after a few days rest" and it still hasn't actually healed. It still hurts and limits movement. And I was a clumsy kid with a lot of mild knee injuries growing up, it doesn't usually take this long.
@@lilpetz500 symptom journal and take pictures of injuries, wounds, and bruises. That has been game changing as someone who can't go to the doctor every time something happens. If it's not resolving I can scroll back and show the original injury and the healing process so far so the providers have more to go on.
@CatCaffeineshould be pinned 📌!
I was lucky enough to be dx'd when i was 11yo · downside is my mum, brother, & daughter don't "believe" in EDS.
HENCE? I'm shunned.
Of course, they also dont believe in my other 2 dxes too · PTSD & Autism.
Cos autism = diapers (?), & PTSD = Fighting in wars.
Anyhow good luck to anyone & everyone dealing with the crap that is EDS.
Love & Peace to all y'all.
Inconsistency can be disabling in its own way, it makes planning nearly impossible. Its so hard to get people to understand. Gaslighting is a curse!
THIS
I was litterlay thinking about this for a few days
I "just" had depression hit me and I litterally couldn't leave bed
then I wasn't depressed anymore (I have episodic depression or whatever it's called in english, in German it's "mittelschwere rezidivierende Depression" or something like that) and I helped my brother move
I got up at 7:30 when usually I get up at 12 (yes, lunch) and was awake till 2 am, moving heavy ass boxes and furniture around from 11-19:00 and I felt fine
I didn't even have muscle aches the next day
HOW DO YOU PLAN AROUND THAT.
you never know if you have your full energy compliment a day, or half or litterally nothing????
especially with adhd, your motivation comes so sporadic. Sometimes I can't do anything for two weeks and then I do the work of two weeks in a single day...
i’m autistic, severely depressed and a couple more mental health things along with undiagnosed physical stuff.
this is my exact experience. most days i can barely get out of bed, shower, eat etc. then one day i’ll have the energy to clean the whole pile-up of depression mess in a 12-16 hour session.
it’s so awful, all i want is consistency and routine.
CFS here. I can't even spend time doing "dagbesteding", literally meaning "spending the day" where you go out to do something, whether that's light work (for no pay) or creative things just to get you out and about. It's because noone can rely on me due to inconsistency but I don't feel any fulfillment doing things without a greater purpose such as caring for others. It's a big yikes
I think many doctors either forget or fail to realize that 1 in 10 people have a "rare" disorder. (I think it was defined as "as 1 in 20,000 having the disorder") those zebras aren't nearly as rare as you might think.
Zebra isn't used like that. You take into account where in the process you are. A physician may see 20 people on a day and 10 of them might have a cold, one a twisted ankle and then some other common conditions. A few a week or a month require a specialist. What is a zebra to the physician might be a pony to the specialist. 1/20.000 is barely a zebra, because that means you are pretty likely to encounter one during your career.
Also, you have to see the harm it can do and numbers needed to treat an numbers needed to harm. You have to consider those and make the diagnosis likely enough for you willing to accept the potential harm that comes with the diagnosis.
Sadly, medicine is a bit of gambling and sometimes doctors lose the gamble.
A boss I used to have suffered for a number of years because she had a disorder that only 5 other people in the were recorded as having. They kept dismissing it and convinced it was something else because only 5 people in the world had that, so it was obviously something else. They finally started treatment because, well, they’d tried everything else, so maybe they should try the treatment for that… and she was much better. I under at the reluctance, but it’s sad she lost so much time.
@MissMoontree We aren't talking about doctors who "take into account where you are in the process" but rather doctors who assume "it can't possibly ever be a zebra" and dismiss you outright, which is unfortunately a large majority of doctors. I've had doctors dismiss a diagnosis that multiple other doctors have confirmed, long after already being diagnosed, simply on the basis of "think horses, not zebras."
The phrase is abused by doctors to dismiss patients because it's easier, and THAT'S the problem we're discussing.
Yeah, I guess its hard to know how common zebras actually are when you adamantly refuse to ever see a zebra
The first time I applied for any benefits, when they asked me if I was disabled, I said "no," but my friend who came with me pointed out the fact that I had my Service Animal with me, so the person behind the counter agreed with my friend. That was literally the first time I ever even considered the idea that I was "disabled," despite training my dog as a Service Animal and using him for 3 years prior.
Similarly, I think a lot of people who use THC for anxiety, pain management, etc., don’t consider it to be self-medicating. (I was one)
Same thing with suicidal ideation. I assumed for well over 20 years that depression and suicidal thoughts were normal - just something everyone went through.
The lack of education prevents awareness, which prevents acceptance, which prevents support.
@@maxleveladventures I was well into my 20s before I learned that suicidal ideation wasn't just a (years long) phase that everyone went through.
@@Kellan__they-them likewise. I had to hear from many people that they’d never once thought about suicide for even a second before I started to realize my experience was the more unusual once. It took many more years and fully separating from my entire family, getting therapy to start making some deeper progress toward better health. Still struggling, but doing my best.
I hope you’re doing better, too
Ah they teach us this in the literature for rehab counselors. You can specialize in disabilities and have most the people who come in for disability rehab not acknowledge that they’re in that category. Really we should destigmatize this stuff. I get it can be hard, but it shouldn’t be terrible or make anyone feel lesser to be in this category of support needs that everyone will be in at some point in their life, like everyone will become frail or impaired by age or whatever eventually.
Hell everyone with glasses is impaired without that technology
@@maxleveladventures I am, much better :) Glad to hear that you've improved and are on a productive journey!
Before I knew I was autistic, I went to an appointment with an EDS specialist at a clinic. I'd waited for a year and a half for that appointment. Turns out that going to a high-stakes medical appointment all by myself made my neurodivergent brain shut down. I had a list of symptoms I'd written down, but wound up unable to relate them. My memory is no great shakes on a good day, but during the appointment I could answer very few questions in any definitive way. And the appointment ended when the doctor in charge looked me in the eye and asked me, 'What made you think you have EDS?'
I was so upset and humiliated that it was all I could do to walk home, because I couldn't make myself get on transit.
So much of what you related mirrors my own experience. The other day, I said to my husband that I wasn't sure how much pain is a normal amount to feel, and he said, 'None. Most people are not in pain every day.' And it got me thinking that maybe I should try again to seek a diagnosis.
Thank you for sharing.
Pain is the body's way of telling you something is wrong, which means the the default pain level (aka nothing is wrong) is supposed to be zero. Maybe a 1 or 2 or even 3 if you've exercised a lot. But even then, the thing that is wrong is that your muscles have torn during exercise, but it will heal stronger.
@@sandwichqueen feeling pain every day literally means chronic pain
@@sandwichqueena little bit of pain always? That is actually abnormal and you might want to check that out instead of using it so devalue the experience of others. It’s impossible to judge the experience of someone else as an exaggeration without actually experiencing what they are experiencing and the fact that you feel comfortable doing so is a pretty big red flag
I'm so sorry about that appointment! I really hope you can go back with someone who can advocate for you. It's just not fair to expect people who have been shamed and belittled their whole lives to suddenly be incredible self-advocates. Patient advocates accompanying us to medical appointments are so useful and important.
I hadn’t really considered that something always hurting was not normal. I get these random extreme bouts of pain every so often, but usually is just minor. Not feeling pain is the exception rather than the rule. Really resonated with the list of excuses (probably bad posture). Oof.
What's funny about this condition, is that it's one of the few where straight cis males have very little information. It's one of the few places where medical misogyny is upside down by necessity. Most of the studies are on womenand AFAB, because it affects them with much higher frequency.
Your metaphor about the Savannah absolutely rings true. My rheumatologist actually said she wouldn't have thought to look for EDS without my binder full of symptoms, because she'd never had a male patient with that diagnosis.
I've been trying to get diagnosed with EDS for the past 3 years, after lump diagnoses of Anxiety (chest pain, heart fluctuating a bunch, joint pain, panic id faint) and Functional Dyspepsia (one bite of food and I was nauseous, burping, and cramping). All the joint pain development as I lost my conditioning from sports in highschool just continued to grow at an insane rate for a young 20s male. The doctors just said the pain was anxiety. Like, WTF, sure I'm anxious, put the pain started first and then I got anxious. Started abusing sleeping pills/alcohol to cope with the pain. As more symptoms cropped up, my health anxiety worsened, trips to the ER for chest pain, shoulder pain (sublux/disloc), difficulty breathing, or feeling I'd pass out. It was after I saw the smallest of actual improvements in my symptoms after watching tons of content from zebras and the eds society that I related to more than anything else (except ADHD content, relate and am officially diagnosed that too), that I officially self-diagnosed myself with EDS and my panic and anxiety quickly calmed down.
Being a cis male probably hasn't helped in trying to get a diagnosis. But my bendy body should make it more than obvious to a doctor with an Ego in check enough to truly consider the possibility of truth in a patient's self diagnosis.
It's easier to get a male diagnosed with EDS, if a close family member is already diagnosed. That's why I got my EDS dx before I started the same process for my son.
@@ThisIsATireFire I've been trying to convince my sisters to get diagnosed, but they both have fewer debilitating symptoms than me because they've been more active and maintained their fitness from childhood better than I have. The sister who I have a closer relationship with since we're both likely AuDHD (though only officially diagnosed w/ADHD) also believes that we all have EDS. Though she hasn't sought out an official diagnosis.
The most recent Dr I went to dismissed EDS for me since I don't have any close relatives officially diagnosed, but at least she did admit that, at a minimum, an HSD dx would likely fit for my symptoms and test results.
Thanks for sharing, did you get any help? I've heard of people getting a diagnosis, and that's it...Just wondering if I should waste any more time with the career clowns.
Dude here, same experience pretty much. Thought the pain was normal. Go to doctors after it got too much, get prescribed exercise (while doing 60-100,000kg lifting every week for a job), physio (riiiiight...), anti-inflammatories (makes it worse and more), antidepressants (No thank you, I have physical ailments needing attention and these prescriptions are making me depressed and anxious!) and/or psychology (I was introduced to mindfulness in the 80s, back when "Westerners" were making fun of it...I won't be paying a week's wages that took months to save up, on a one hour appointment to let the "professional" know I'm in need of medical interventions not easily commodified extracts of Eastern philosophy).
At 38:15 Ember Green points out the major flaw in most "thinking" today, which leads me to the question, "Does this actually affect women more than men?". Maybe there's a bias against dudes...
When I was younger, younger dudes masked health problems to avoid showing weakness, the world was a prison yard. As I grew up the stories of oldheads stayed consistent, like the experiences Ember related here - They never bothered much because we don't get believed/listened to, we don't get healthcare.....unless we're rich? Or a woar grinninal...
Not sure that can be accounted for properly via statistics. At least openly...
I'm having success with the Cannes e voooor diet btw, just in case it helps you or anyone else.
@@subwayfacemelt4325 well, I'm a veteran, so I'm at the mercy of the VA healthcare system. Which means that, no, I I haven't gotten anything past the diagnosis. There's a specific reason for that though. In the time it took for me to finally get my diagnosis, I still had to do something about the pain, so I have a mmj card for my state.
The thing about the VA is that as a federal facility, they take the whole schedule one thing very seriously. Pain management told me, an every day user for a confirmed chronic pain condition, that I would have to pee clean before they can work with me.
So, long story short, I absolutely haven't gotten anything past my diagnosis, but I do have a very specific roadblock in my way.
I was lucky, I was diagnosed with Ehlers Danlos at 3 years old. But when I was 11, I got in a car accident that left me bed ridden. Every symptom I had got worse. New ones came with it.
I was in, so much pain. No one believed me. I had the medical documents to prove it. They thought I was a problem child, wanting unfair benefits. Saying they’d do one thing to help me but never following through, then gaslighting me when I brought it up.
It got to its very worse when a nurse began to accuse me of making this up cus of mental illness. She would talk so sweetly to me while saying the cruelest things. She called CPS on my mom because she believed that my mother (a women of color) was hysterical, was keeping me home from school when in reality I would collapse every time I got up. Nothing ever came of it, thankfully. But it did scar me.
I swear everything you said in this comment is exactly my experience, it's kind of surreal. School administration thought I was a problem child, wanting unfair benefits even though I finally had the medical documents to prove my diagnosis (EDS, AMPS, IBS, and scoliosis). Both nurses at my Middle School were absolutely terrible and I think they traumatized me and engrained the idea that I was "lying about how I felt" and "just overreacting", it was horrible and I still experience it. I would go to the nurse for body pains, stomach aches, headaches, and back pain (talk about foreshadowing) and even when I would ask them to call my parents because my parents know me better than them and how to treat my pain, they wouldn't until I FINALLY got an IEP were they specifically stated in the documents that they HAVE to call my parents if I request it. The school would say that they'd help me but would never follow through and would gaslight me whenever it was brought up or just wouldn't respond period. It's been 3 years in this hell of a Middle School and my school still thinks my mom is keeping my home from school to party or something when in reality I'm in chronic pain 24/7 and in a constant state of stress. Anyway, I'm sorry that happened to you, it hurts me to know other people had to experience similar things I did when no one should. I'm glad the CPS calls never went anywhere, but stuff like that sticks with you forever.
@@Nixcharon We should be open and artist, to tell our stories. Never let anybody silence you or think you deserve the mistreatment you’ve been given. I eventually dropped out of high school and it was the right decision for me, about to get my GED this February. Things do go up from here.
So traumatizing😢 my mom is WOC too and we went through something so similar. Dont people like that nurse ever think we sure wish we could know how they feel? If they feel so healthy, good, strong, and fit why be mad at or punish others simply for not being the same...
Honestly, as a disabled person in the UK, the fact that you said you had an appointment in 5 minutes and had time to talk for a further 47 minutes is super relatable by itself 🙄
Your system could be better, but anytime you are upset with it, remember the US system and do what you can to make sure your politicians understand how important it is.
@@thoughtlesskills Can't disagree with that, though I'm pretty sure our ruling class already do understand, and they're actively working to dismantle the NHS so our system can work more like the one in the US.
Neoliberal capitalism: Hurting everyone but the rich is the system working.
@@thoughtlesskillsthe politicians there want to try privatise the healthcare just like in the US, unfortunately
@@thoughtlesskills This isn't about oppression olympics or who has a better system. Free healthcare is great, but we have our own problems, especially seeing as the current Government are purposefully throttling it to make it as inefficient as possible to try and push for privitisation. The system is failing by design. I've seen several people in my circle of friends and familiy die recently due to negligence and slow acting within the NHS, and the Goverment WANT that.
I could throw your logic right back at you and say "Sure, your system could be better, but anytime your upset with it, remember the UK system and the fact that I was in a 5 year waiting list to be diagnosed for ADHD and another year+ wait for medication, while my American friend was diagnosed and medicated for her conition in 2 months".
@@Spamhard I don't believe the comment was about oppression olympics, but was more of telling people to use what happened in the US as a warning for what is coming for the other side of the pond, too. It's not a dig or a 'haha we have it worse' it's a 'fight to keep it from getting worse'. Which is not wrong to say.
Now, if you want oppression olympics, I waited 7 years in the US for an ADHD diagnosis and can't get meds because doctors refuse to prescribe adderall and the like without requiring monthly drug tests, which I have to pay for myself and can't afford, because we do not have free healthcare and insurance does not cover drug tests (or my other meds for my physical disability! wheeee!). But then, I am also not saying it's sunshine and rainbows in the UK 🤷
I have POTS, EDS, CFS, and ADHD (all the acronyms, lol) and despite now having official diagnoses for my issues I STILL gaslight myself into thinking that I’m not even disabled and I’m just making up all my symptoms or not trying hard enough. Thank you for this video ❤️❤️
omg I also have that weird feeling of fullness in my ears!! had no idea that was related to pots or Eds!
me, having one good day: ah, clearly i have been faking this
hey disability twin lol just added asd to the list and same
Idk if its gaslighting when you've been conditioned to think that way by most of the world.
I relate to this so heavily...
On the verge of tears because I have hypermobile joints, I was diagnosed at about 16 or 17 and sent to physio to "straighten out a bit" and fix the tissue damage from my injuries. I knew I had to take care of my joints and be careful but NO ONE, I mean NO ONE understands or accepts the always feeling cold, the stomach issues, the eye-fatigue, god, the WHOLE BODY FATIGUE all the time I can never sleep enough, I can never get good sleep and I like fitness, I work out but Im careful when I do it but no matter how fit I get, I'm always SO TIRED and so weak and slow and it feels impossible to work a full time job and exist, to have the energy to clean my clothes and feed myself and everyone acts like it's so easy and I just can't understand why I'm so tired and they aren't. I'm seconds away from exhausted crying.
🫂
I think under capitalism people are used to hiding alot of their pain because showing vulnerability is frowned upon but plenty of people struggle with various body pains and conditions we are taught to neglect and break ourselves just to build profit but most people who are not grotesquely wealthy are going through alot it's just under the surface and invisiblized
✨KiwiJJam✨
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💫✨🌟❤️🌟✨💫
@@AeonZhang exactly it's good to be supportive people deserve to be happy and comfortable and feel heard, solidarity with everyone struggling hang in there shit is hard but our voices and experience is powerful and resilience is inspiring in the face of the overarching cesspit of violence and suffering
I fully passed out on Friday after my biology lab because even though we have chairs, it’s just easier to get good visibility of the animal while standing and I was not gunna sit down till I was done. So that was fully my fault lol, but I got back to my room +on day 1 of period so everything hurts moreeee and just slept. For 2 hours. I’ve slept for 14 hours or more on weekends before and the only thing that got me awake this morning was a text asking to meet for dinner but I had stuff to do so I got up to work on that stuff first. (I woke up at like 11:30 btw dinner at 6 I’m a pretty slow worker.)
one of my closest friends has EDS and endometriosis, and can't get on disability for the reason that since "EDS can improve with exercise" they can't guarantee that she will be disabled forever and therefor is able to work..... it's such a miserably unfair way of reasoning.
In Germany the Bar for disability is: longer than 6 month. With people which conditions might better have a reassessment in a few years or everyone who turns 18. Probably different where you live but I hope keeping it in mind when fightibg for rights, that better refulations like this are possible and even state of the Art elswhere :)
DAMN she needs a better lawyer!
Wishing your friend lots of love and all the comfort possible. ❤️ If she's looking for specific ideas to consider:
A friend of mine takes progesterone for her endometriosis and it's essentially saved her life. I take a daily progesterone-only pill for severe PMS symptoms that used to wipe me out 14 days a month, and I highly recommend anyone having uterine- or hormone-related pain, or major mood and executive function changes, inquire with a provider about it or a comparable treatment.
Can a lawyer, social worker, or, if you're in the USA, her county's Aging and Disability Resource Center (ADRC), help with a Disability appeal? Unfortunately, it can take multiple attempts.
As for exercise, some folks have significant exercise intolerance. It's been revealed that the "PACE" medical trial's data about graded exercise for the chronically ill and disabled was "adjusted" to show better results, when actually a whole group of patients were made worse by the program. Jessica Kelgren Fozard has an older video about it. (She's lovely, and her video on NOT banning straws is essential viewing, but I stopped watching her channel because she was still doing Better Help sponsorships, after BH's irresponsible privacy practices, and other issues, came to light.)
Wishing your friend lots of love and all the comfort possible. ❤️
EDS doesn't improve with exercise. It gets worse slower, but it doesn't improve
What country are you in?!
What boggles my mind is so many conditions like EDS and Marfans cross over with neurodevelopmental conditions like autism, sensory processing disorders and ADHD and yet not all doctors are even aware of these crossovers.
Imagine if you were diagnosed with one condition and the doctor actually suggests you might also want to get tested for related ones as well. Would save a lot of us time, effort and mental stress.
IF they even heard about they only know what their speciality knows about EDS, like the rheumatologist only looks at joints and when I complain about my heart he looks at me like I was crazy - you'll need to talk to your GP about that.... And now I see all all the different specialist to all the different symptoms. And there is not much to be done about it anyway.
it isn’t even just genetic connective tissue diseases. if you have a family history of autoimmune disease or an autoimmune disease yourself, you’re more likely to have autism. same with fibro. same with me/cfs. it’s quite strange (and also explains why if someone with autism and joint pain may not necessarily have EDS- because they might also have autoimmune disease in their family, as maternal rheumatoid arthritis can lead to autism in the child, for example). autism and chronic stress (a massive trigger of autoimmune disease, ME/CFS and fibro, actually what got me sick lmaooooo) have a large correlation too. THAT’S why. It can raise a lot of false red flags too. Medicine is complicated. Still, autistic people are significantly more likely to get sick and, to put it bluntly, not ever really get well
So, there's hope. I was diagnosed with EDS last year. The only place in my area is actually a children's genetic center. That was fun. I'll be 40 in a few weeks. Had to take my kid with me since it was a school holiday, but my husband had to work and we don't have a sitter.
At the end of the appointment, I mentioned that the kid was recently diagnosed with autism, and the doctor immediately had questions. He's requested that I bring him back to the children's genetic center (instead of going to the national center for rare diseases, which is within the same organization as the general children's center that dx the kid's Au. and also an hour drive from the house, in the other direction) for EDS dx because he's currently doing a long running study on the link between autism and EDS.
I'll probably take the spawn to the guy doing the study. We all already know the results, but I want the official dx so we can chase down MCAS and other interesting things that are frequently part of this genetic party.
I'm don't have an official autism dx personally, but I've had my adhd dx since '93. I figured out I probably have autism 13 years ago, but since I've got the ADHD dx already, I just don't see having it officially documented as being worth the hassle of jumping through the hoops to get diagnosed as an adult.
TLDR; there are studies being done to prove and figure out the connection.
@@ThisIsATireFire Thanks for ya story. May I suggest considering "digestive health"?
I seem to be reversing all the symptoms you mention here after trying a zillion diets, finally settling on a low-histamine, low- ox a late, Cannes e voor diet (also makes it low carb). Might be worth looking into, maybe try mentioning it to the doc, though looks like they have plans that this information could upset.
I also discovered in my 30s that I have pretty much the same list of conditions. I was just telling my therapist "sometimes I forget I'm not normal. And then the next day something happens and I remember my body is jello and I'm an alien."
I feel totally normal until I go into environments designed for the average person. I’ve of course made places like my home and car “me friendly” so I can function there! 😵💫
Clicked on the video thinking it was about eating disorders. I have never once thought I'd even potentially have Ehlers Danlos, but I just spent the first 15 minutes of the video violently sobbing because I randomly felt so seen and validated, I have every single symptom you had in the beginning and attributed to the exact same things. I don't even know where to go from here
Hi Maggie, thanks for sharing. Just wondering if you're better at all?
In case it helps you, I recently went to Cannes e Voor diet (after trying everything else plant based) and it seems to be reversing my symptoms. I'm also following low histamine, low oxalate, low carb, and the "Auto Immune Protocol" guidelines.
The severity grading is very damaging to our cause! Yes, it makes sense to have similar patients in the same group, and we need a name for that group. But who the F came up with the terms "mild, moderate, and severe"?! Laypeople (and even some doctors!) don't understand "mild" and "moderate" at all, and they misinterpret "severe".
Already a "mild" case of a condition can be what laypeople would actually call "severe" (disabled). When Laypeople hear "moderate", they think "annoying but bearable", although we talk about patients who seriously consider taking their lives! And it is not Laypeople's fault either. These terms where used very differently in everyday life, before some professionals decided to use them to describe their patients in a very wrong way 🙁
Apparently my other comment got deleted. Just wanted to say thank you for bringing awareness and attention to this 💖
And the cat breaks are always welcome 🐈😻
I do have very strict comments moderation settings turned on & also set a lot of words as "banned words". Perhaps one of the words you used was on the list, apologies.
@@Ember_Green I am not surprised to hear that you need strict moderation, unfortunately.
The nasty thing is that UA-cam is very sneaky with its moderation. The system takes a minute to publish or reject comments. But for the commenter, it looks like a comment was published instantly. The comment will be visible to the commenter even after reloading the page. Then, a minute later, the comment may disappear without a warning. As a Leftist, I experience this regularly 🙁 I started to make backups of comments and edit them when they got rejected by YT. But sometimes, like in this case, the comment seems innocent enough to not get deleted by YT. In these instances, it is frustrating when YT proves me wrong 😁 (Not blaming you, just ranting against YT)
Anyways, I thanked you for pointing out how the R1ght and N3ol1b3ral1sm incites h4tred against people with d1sab1l1t13s 😁💖
I have always been uncomfortable with any sort of self-reporting scale system (numbered, mild-mod-severe, etc) used as a medical assessment. Never made much sense to me...like it's obviously not an objective standardized measurement. Different people will consider it differently based on their own experiences or whatnot, so I'm always "overthinking" it.
But more important it lacks all nuance and context. There are different types of pain beyond level of severity, there are life circumstances that could reasonably make one more or less depressed one week compared to others, etc.
It'd be fine as baseline starting point for a more robust patient assessment, but I feel oftentimes it's effectively the majority of the assessment.
@@Kadaspala This isn't a self reporting scale. Doctors, psychologists, and scientists use this scale for diagnoses and research ... at least for ME and depression.
The smirking physical therapist reminds me of something that happened in my twenties. I went to urgent care -- in the US, without insurance, so you know it was really fucking serious -- with upper abdominal pain. The doctor pushed on my gall bladder and I made a sound, and she went "oh well you laughed so it's obviously not your gall bladder." She poked a couple more things and said "Probably just indigestion." I said "I have a digestive disorder so I know what indigestion feels like. That's not what this is."
The way this lady just turned to my mother (who drove me cause I couldn't) and just said "Probably just indigestion."
(It eventually turned out that I had a "lazy gallbladder" or another biliary motility issue which can mimic the kind of gall bladder attacks that gall stones will give you, and is a lot more common in people in their twenties than gall stones. Mine ended up going away on its own, fortunately, but fuck you lady, it's not indigestion.)
Trying to explain my disability to my employer was so difficult. Yes, I can spend 40 hours a week carrying around 30lb boxes. No, I can't spend 10 minutes standing in a checkstand or bagging groceries. Thankfully, even though she doesn't understand it, my HR manager has been very accommodating and expressed her amazement that I can work a job at all. Well, when your other option is to starve to death waiting for a disability hearing to finally go in your favor, you begin to accept that your pain doesn't matter to anyone else. Like many other zebras, I have the sampler platter of disorders. EDS, POTS, autism, ADHD, and my doctor says that according to my last set of labs I have an autoimmune disorder to look forward to when it decides to go symptomatic.
I'm often asking my partner "does this happen to you?" I feel like a broken record and still I can't believe it when he tells me that he isn't in some level of pain at all times, that most people aren't in some amount of pain at all times. Every time someone complains about an ache or pain I take it as proof that everyone must be in pain and I just need to be tougher.
I also take any complaints of pain from anyone else as proof I need to be tougher.
Sometimes, however, someone will pause their whole life or take the day off work or some other normal justifiable reaction in response to them getting nauseous or having big pain or a headache or vertigo or anything else, and it feels somehow validating to me. Like 'see, experiencing this thing is actually a real symptom that people who don't experience often find really awful and difficult when it comes around so much so that it justifies putting life on hold. You're not exaggerating, this symptom is really actually truly not nice'.
That said, most of the time I feel very much like I am exaggerating because it can't be a real problem if it interrupts functioning almost every day, especially if there are sometimes when it doesn't interrupt functioning. If I was nauseous on Monday, I can't possibly be today also - especially because I was almost approaching fine on Tuesday.
What autoimmune have you got coming
@@Truerealism747 my doctor says it's too soon to tell from labs alone. The most likely seems to be lupus? It could take a few years or even decades before it becomes a real problem. My mom has MS and didn't have any major symptoms until she was almost 50. A lot of lupus symptoms overlap with my current symptoms so I'm not even sure if I will notice right away that there is something new wrong with me lol
I just got genetic testing back last month, and at almost 39, I finally got diagnosed with periodontal ehlers-danlos syndrome. As a kid, I felt so isolated by all of the experiences you described opening your video. Thanks for reminding me I'm not so alone, and some of the complex, often oxymoronic feelings that come with a chronic condition are a lot less scary when you aren't the only one having to navigate it. Thank you. It felt nice to be seen, and not just stared at, y'know?
I know ❤️ thank you
god as someone else born in the late 80s, with a disabled parent who needed benefits my whole life, those headlines about benefit scroungers sure made our family feel like shit in the 90s/00s going on today. Trying to make us feel ashamed for getting help my mum can't survive without! I get so mad seeing those headlines every time.
The only reason I learned about EDS was I was getting evaluated for top surgery and my surgeon looked at me, my mom, then back to me and asked if we had been evaluated. We had never heard of it before and my mom was able to find someone who knew enough about it to diagnose her.
The absolute distrust towards anyone with an invisible disability is staggering and scary. I also got so many comments about "corpse look", "acrobatic flexibility", and "laziness" especially. My fatigue, my pain, my passable visible symptoms, people loved to comment and complain about it but never question it. It got to the point I had to use knee braces, a wrist brace, and eventually a cane. Even my parents said I was "suddenly sick" and "pretending" despite their years of seeing my body degrade in front of both of us. Something that was so alienating for me was when I finally used my cane at school and activities, and people I didn't even know said I was faking it despite only knowing me from a passing glance in hallways or sitting in the same area at the library. I wish I could apply the same love and gratefulness for my autism to my EDS. I wish I could find positive things about it without an overwhelming bitterness. I wish I didn't have the same inane distaste for EDS that I have observed abled bodied people have for me and others with invisible disabilities.
It took my partner years to finally get a referral to a geneticist to get an official diagnosis of hypermobile EDS. Just years of their time being wasted by doctors who honestly seemed as disinclined to cooperate as they did because it annoyed them that a patient had figured out on their own what was probably wrong, knew what the path to a proper diagnosis looked like, and was advocating for themselves to be put on that path.
Not to diagnose themselves, but to merely be put in the hands of someone qualified to do so.
The eye rolls and far too quick "absolutely not, theres no way you have that"s said it all. She was pissing them off and they didnt want to give her the satisfaction of entertaining her "hypochondria."
Guess what the genetic test confirmed when they were finally allowed to get one?
Even if youd known to go to a doctor, it probably still would have taken 36 years to get properly diagnosed because doctors, who are literally taught in medical school that malingerers and hypochondriacs are endemic and most of whom have never even heard of EDS, are often arrogant and petty.
I didn't figure out that I had autism. But once I started watching autism videos I figured out why I had been sick for 9 or 10 years: POTS. I got diagnosed with POTS. EDS fit too. The geneticist said that I probably have EDS but it is not worth diagnosing me with it. He refused to see me and told this to my PCP. He told my PCP to deal with things as they came up.
What??
Which type of EDS did the genetics test confirm?
Thank goodness your time to talk is here and that you do it so well
I’m 73 and diagnosed autistic last August and many years ago was treated as hyper mobile and have had so many fractured, broken bones and dislocations (why on earth wasn’t i sent for tests?)
Haven’t found my voice yet but can listen to you and feel the affinity
Thank you so much 😊 xxx
Thank you!
That sounds so awful :( I’m pretty glad that if anything on me is hyper mobile that it’s not very noticeable. Only thing I’m sure on is my pinky’s cause I can bend the tip of my pinky up further than it probably should.
This video was very cathartic to me. I also have that good old autism/POTS/EDS combo. All of them weren’t diagnosed until adulthood, and I have not only struggled to accept that I am disabled but to accept that others are always going to minimize my disability. Especially because I’m in my mid 20s.
It was wonderful to see someone else talk about this and their lived experiences. I spent the whole video relating to all the “little” things you mentioned.
The part where you imitated people talking about how worse off disabled people are still able to contribute to society broke me down crying. It was almost word for word my own negative self talk. I'm neurodivergent with hEDS too, but also have a very rare sleep disorder that means my sleep cycles later and later everyday. I spent years just trying to handle a part time job for 3 days a week, but was spending the remaining 4 in bed unable to even think. I still doubt myself sometimes if I've felt particularly well for a few days, like maybe it's not as bad as all that and I should just try harder to function like everyone else. It never lasts though.
Thank you so, so much for this video
I'm sorry to inform you, but delayed sleep phase syndrome isn't rare. I have it too. My circadian rhythm can go from waking up at noon to struggling to fall asleep at the witching hour. Sometimes I can go to 24 hours and still somewhat function. Yeah, my eyes burn, but I can't fall asleep unless I'm either medicated (my doctor gave me a mild sedative, it's stopped working as well), or awake for 30 hours. Even then. Everyone else's 10pm is 4-6am for me. And I need a minimum of 9 hours to be able to even think about writing a to do list for the day after to complete a third of one task.
It's a truly horrible disorder, and it's so frustrating because so many NTs have told me "stop using your phone before bed", "don't drink coffee past 12pm", "exercise, go for a walk, it'll tire you out", "go to bed earlier". And what? Be in pain to the point where I have to take 4 ibuprofen just to drop it down to a 1 or 2? Stay up all night because I'm stressing about not falling asleep at 8-9pm? Not distract my ADHD mind that'll run the most destructive train line of thought imaginable? Yeah, works out real great.
I am disabled and, for me, one of the most frustrating things is the unpredictability, and my inability to get people in control of thing I need to understand it. I have an inhome care taker, and part of the program is a social worker visit monthly and a nurse eval yearly, and I find my self often having to either play up, or hide down my limitations in my day to day functioning. I tried to explain it once 'I don't need things all the time but I need all the things sometimes' If I present to incapacitated they could try to move me into out of home care, but if I present to able bodied they could decide I don't need care at all. The reality is I pay for my good days with bad weeks, sometimes I feel fine, I can do the things, that might or might not be followed by being chair bound for a week, but I still want to do the things when I can.
Really powerful video. I don’t have the same medical issues as you, but my neurodivergence and chronic pain have put me in similar gaslighty situations throughout my life. Thank you for making me feel less alone in that. Also, what a beautiful kitty, and such a wonderful purr!
Thank you! And I have informed Boba cat that he is to do more performances in the future ☺️
The 'growing pains' brought back visceral memories. I remember sobbing in agony and my mum rubbing my legs trying to soothe me, but it didnt help, itd be hours of excruciating pain and then eventually itd fade.
My mum took me to the doctors multiple times about my joints clicking, the leg pains, my constant sprains. They said 'growing pains'.
It wasnt until i was 16 and was on a small hike, my hip just gave in and i couldnt walk without extreme pain. I was so embarrassed because i hadnt injured myself, i wasnt tired, my hip just stopped working. I was taken to a physio therapist and they did an exam and told me i had hyper mobility spectrum disorder but i didnt really know what that meant. I grew up very used to just getting hurt randomly and i pushed through it bc i was embarrassed. People would accuse me of faking injuries so i just told myself i must have been.
Then at 25 came the Autism spectrum disorder diagnosis 😂 and it all linked up. Now i do similar to you and i have a routine before bed and in the morning where i have to stretch and prepare my body before using it. I also need to be conscious while walking that im not hyperextending, so that i dont pop a knee joint, or an ankle joint.
As soon as it gets bad enough that i need to use a walking stick, I'm getting one. No shame. Dont care who judges me. I know ill need walking aids at some point, so when it comes im accepting it. Until then, i will try to use my body in ways that dont hurt me. ❤😂
Ps: people underestimate Pilates. 20 mins of Pilates will have a non disabled persons core shaking. Nevernind for us who's joints dont work lol. Pilates is really helpful for me when im able to do it, it genuinely makes my pain overall less severe day to day. ❤
The autism makes us feall.more pain in subconscious brain apparently
It's really sad that there's going to be some of those anti-disability people watching who recognize every single one of your symptoms, but are only going to use that to invalidate you. 'I have that too, so you are definitely not disabled, pfff', without realizing that they too deserve sympathy and adequate health care
My mum was also a nurse. Now at 41 I’ve been diagnosed with ADHD and Autism. I’ve heard so many of those things you mention and I just wanna cry and be bitter about it.
As a fellow EDS-haver and autist this video made me cry. I've been in an uphill battle for months to access disability supports in my country and I have been feeling like I'm being gaslit around every corner while my life shrinks to the four walls of my room. Thank you for voicing and articulating these thoughts, it made me feel so seen.
Thank you for your work ! Disability goes beyond inability, and pain is disabling.
I found out the hard way that deconditioning will mess up even a mildly hypermobile person during a pretty rough patch of the lockdown. I went from little to no joint pain and only party trick subluxations to having my shoulders pop from sitting too hard on the couch or carrying a shopping bag. Turns out muscles are the only thing holding some us together 😬
I relate to this. I was pregnant during the later part of the pandemic, and I’ve been constantly in pain before that. But my pregnancy was hard and made a lot of things worse. I didn’t move much during my pregnancy. After giving birth, now my hips are moving out of place and popping constantly. I thought it was just my scoliosis and lack of exercise, but the older I get, the more my joints pop and crack and hurt, and I’ve been considering EDS for that reason (plus a number of other symptoms that I’ve identified). A lot of this video resonates with me. I don’t know if it’s EDS or something else, but I’m hoping to find out whatever it is this year.
Re: The Rarity of EDS
Obviously this is just anecdote, but I am one of those people convinced that it's NOT a super rare condition. The estimates I see put it at 1 in 10,000 people at the very, very most.
I fairly regularly meet people with EDS. Recently I met three in one day. I am not a very social person. (This was before I started actively looking for people to talk about the condition with, of course)
I didn't know until my 40s that not everyone hates going to a busy shopping center. I thought everyone thought it was too chaotic, too loud, too random, too bright and it did everyone's head in, so they want to get out of there asap. One day I asked me partner and she said it didn't bother her at all and I thought she was unique. Then I found out it was my experience that was more unique. I'd misunderstood that most people don't like the inconvenience of it all when it's busy, but they don't find it intense like I do.
Huh, I didn’t know that either. Even after reading your comment I still think that most people think it’s too much… maybe not 90% but at least 60% right?? Idk!
@@emmanarotzky6565 it depends on what too much means. For some that is just annoyance, for others it's full on overload, brain shutdown and fight or flight.
As someone with EDS, POTS, and autism, it always feels validating and good to hear somebody talk about their own personal experiences with it all. Thank you so much for making this video, it's really good.
Be on the lookout for MCAS, too.... these syndromes tend to run in packs.
I still don't have official diagnoses for half of my stuff, mostly because there just aren't doctors who know enough about EDS (especially hypermobile type, because of the lack of a known genetic marker) to feel comfortable doing the clinical diagnosis, or even MCAS.
I test high enough on PTSD screening, just from medical trauma. I have had MCAS and POTS symptoms since age 12 - but didn't figure out POTS until age 31 when it became disabling enough to send me to the ER multiple times per month for 2 months.
I would never have known that I have been experiencing migraine my whole life if the algorithm hadn't steered me towards YTers with complex migraine and my therapist telling me point blank: that is not normal, you need to tell your neurologist. I was having migraine for about 20 days per month - I just thought I had a lot of headaches and had no idea that vertigo, brain fog, light sensitivity, and discoordination was related.
MCAS has been the hardest to figure out, especially when it's hard to get a baseline because it's always flaring up. A low histamine diet has helped some though.
@@coda3223 Awesome story Coda, I'm sharing the same path right now. How are you these days?
Just in case it helps you.... seem to be reversing my MCAS/POTS/EvErYtHiNg else on my (somewhat self-developed) low histamine/oxalate/carb/AIP informed Cannes e Voor diet.
I hope my mom watches this video. I sent her a link, it connected everything in my mind from my uncle having reynauds syndrome and joint issues and papery see through skin to my entire family having intermittent joint problems the saggy jowls that everyone develops in my family mom’s gerd and varicose veins and muscle cramps and spasms, the papery stretch marks the painful muscle cramps see through skin as well as my gum recession and easy bruising, everything fits but I don’t know if this will convince her to consider it, because “I know someone who has that and it’s different for them, anyways it’s incredibly rare.” I hope that she comes into watching this one video with an open mind and without preconceived ideas of what EDS is and what it means to be disabled.
I have autism and hypermobility, both late diagnoses (when I was 28 and 32 years old, respectively), so I felt a lot of this video. Like in a literal sense too, as it made me very aware of my joints. The absolute level of dismissal I've experienced over my life because of these things is staggering. I still feel like I'm not getting adequate care, like such a thing just doesn't even exist. Thank you for making this video!
I have autism and also have almost every symptom mentioned in the video, this was actually picked up as a child, but they put it down to a nonspecific "motor learning disability" that was claimed to just be a symptom of my autism rather than investigate further. Maybe I should get tested?
@@robokill387 You should definitely look into the possibility of having EDS then.
you're such a great person. I truly care about you even though we've never met. your story moves me so deeply. I have ME/CFS, and was gaslit for 9 years into pushing myself effectively making my baseline worse. Noone understands the struggle. Im pretty much housebound, spend 23 hours a day in bed. I wish life was different for us.
Partner of a woman with EDS, this was a fantastic video and I can confirm that she’s had much of the same experience with this.
One thing that’s very interesting is the whole being fit as a child/teen/young adult and then having a period of inactivity and the EDS symptoms coming in full force. She had this happen through external factors because her other conditions made her ill and unable to do much activity, so by the time those were under control, the EDS and POTS were hitting hard. We thought that perhaps some steroid induced Cushing’s Syndrome had brought it on, but it sounds like it only happened indirectly, and her previous good fitness was masking some of the most severe EDS and POTS. Because yeah, it shocked me that she was way more fit than I was when we met, doing pilates and other exercise, and yet when she started getting sick, she couldn’t make it through a mild/medium hike that I was handling despite being pretty sedentary.
This is a shitty disability to have and made infinitely harder by the lack of awareness for people who have it, the people around them, and even the doctors who are supposed to help. And she caught it pretty early, fought through the brainwashing saying it’s just normal, and found doctors to believe her, and it was still the hardest thing to go through that I’ve ever seen.
Thank you for making this video. I’m tempted to share it with the people who doubt or don’t understand her conditions…
I’m feeling unconfortable right now. So many of these are matching things I’ve been experiencing all my life.
BEING GASLIT SUCKS
SO MUCH
Additionally, having a system to not be in pain is also not a thing most people have “Well I don't get joint pain if I lay down all day instead of doing such strenuous activities as.. standing... and sitting” is not what most able-bodied people would say
Rewatching this video because the first time made me sob. It felt like you were describing my life exactly. The counselor said it's "just depression" today again.
I have hEDS, CPTSD, adhd, suspected autism, endometriosis, and I just got diagnosed with POTS. I am 29, and I was undiagnosed until 27.
I’m currently 9 minutes in and it’s jarring how everything you’ve said so far is exactly how I felt until I hit my breaking point because I couldn’t do anything and was in absolute crisis. And that I am now significantly more disabled than I would’ve been had I gotten treatment before I had become so fucking ill that the choice was either treatment or dying.
The amount of time I’ve said fuck out loud to myself in the first 15 minutes because I feel and experience 97% of the things you mentioned …..oh boy. I’m scared.
It makes perfect sense in a society that doesn't want you to be disabled because all it cares about is money.
It took me 37 years to get diagnosed with EDS; something I've lived with since the day I was born. I truly feel your pain. I'm sorry for the both of us. So many similarities
I remember talking to my therapist about my pain. How I constantly need to sit and rest during walks because it feels like there's shards of metal in my joints, how since childhood I've been kept up at night with unending pain, how my joints crack and pop so loud all the time that people hear me coming through closed doors. I have no idea what it could be, though I definitely stretch in ways I shouldn’t be able to and can feel my joints pop in and out of place. I was just worried something's wrong and was sick of the exhaustion dealing with the pain brings. She told me it was just psychosomatic.
I don't have the confidence (or money) to try asking a doctor to take me seriously. Had to quit my last job because the stress was destroying me. I had diarrhea between 8-12 times a day, more than my usual 3-5 times, and I was laying awake for 3-6 hours at night in pain from working a retail job. Me being autistic makes people doubt that anything more could be wrong with me, in my experience.
I was diagnosed with EDS in my 40s (after years of being certain had a connective tissue disorder), and atraumatic fractures in my spine mid 30s. And everything you've described. And seen dozens of doctors and specialists and emergency department staff and allied health professionals.
For me, everyone minimised my pain or injury or abnormality; so I did too.
Even having dozens of pneumothorax with lung collapse in my 20s, that was just a weird anomaly. Even that my brother had collapsed lung at same time, was pure coincidence.
Especially when had collapsed lung, fracture and dislocation at the same ED visit. Coincidence.
I learned about EDS myself, when investigating if Marfans existed in my dad's family, after spinal fracture. I self diagnosed. Collated medical evidence.
Visited a physio who "wrote the book" and is more educated about EDS than most specialists in my country, she said "yeah you're right, you almost definitely have EDS, if you don't I'm going back to uni to relearn everything. "
I found a GP to refer me, waited over 3yrs to see a rheumatologist. Finally got diagnosed. Asked why I'd waited so long.
What's the name of the physio who "wrote the book"? Do you have the name of the book?
OMG this video helped me feel so validated. The whole "How did you NOT know?" thing made me feel like I was overly sensitive and fragile, because I DID know, but no one else cared, just like what you said.
Thank you for posting this video.
There's so much overlap of life experience here with me. I have a systemic nerve disorder and a pretty severe case of CFS. Not EDS, but so many experiences here are 1:1 for me. As are the excuses heard. And that I told myself. I had a freakout a couple years ago when I realized I didn't know what being comfortable was like.
Universally the response to any of my issues was, "Yeah. That's weird. No we're not going to do anything to help you. Here are some anti-depressants. Exercise more."
Nevermind that going out just three days in a row, one time, with my friends? It caused me to be unconscious 22 hours a day, gradually improving over the course of three *weeks*.
I'm not super active, but more so than anyone else here that doesn't have my issues... but I still get told to exercise more.
Frickin'. How.
And tests always showed nothing. I was just weak. And pathetic. And exercise will solve everything. I promise.
The fact it damn near sends me into a coma every time I try is just me giving up at the first hurdle.
Our culture towards disabled people is so, so harmful.
Anyways. Thanks for making me feel seen. 🍀
Wow, this episode hit home for me. Even in my mid-20s, I honestly thought I was a "wuss" when it comes to pain, and that I was lazy because I always wanted to sit down instead of standing around like all the other adults around me. I distinctly remember when I was a child asking my Mum "Why do I get so many bruises on my legs? I don't know how I got them.", only for her respond "Don't worry, that's normal. I get them too- see?". We had a house rule that us kids had to go to the toilet before getting on the trampoline because otherwise someone would have an accident. My hands and feet would always be hurting, but that was just me making a fuss- my sister has REAL health issues because she gets migraines. To this day, I still get a trauma response to the phrases "Suck it up, princess!" and "Build a bridge (and get over it)!" that were such a mantra for my childhood.
It wasn't until I met my now wife in my mid 20s that I learnt for the first time just how strange my body was. How most people can't just swing their foot on to the vanity to dry their leg. That "just having flat feet" should not make my back, hips, knees and ankles ache if I walk for more than 10 minutes or so. It was only after years of pushing my medical professionals to investigate one thing after another, to be referred on to specialist after specialist, that I finally had a rheumatologist I was "just hypermobile". One the way home from that appointment, my Googling about hypermobility came up with Wikipedia's "See also: Ehlers-Danlos Syndrome" link, and my life changed forever. I quite literally got lightheaded as I read that article and even missed my bus stop because I was transfixed on my phone.
Everything clicked in to place. Suddenly so many things in my life that I thought were normal, were not. I had spent my childhood in a family that acted as a medical symptom echo-chamber. We all got excessive bruises and sensitive bladders, so that was normal for us. What we didn't realise was that we all have the same underlying genetics, even if some of us were more affected than other. We now realise that my mum and two of my sisters have mild EDS that is recognisable, but not disabling for them, even if it is disabling for myself and one other sister.
I still sometimes chuckle that I self-diagnosed myself with EDS about 20 minutes after a specialist doctor told me I was "just hypermobile", but I really shouldn't. It shouldn't have taken me a FURTHER FOUR YEARS of pushing for referrals to geneticists and specialists to officially get diagnosed, and another seven years still to be diagnosed with Autism and ADHD. I shouldn't had needed to beg for these diagnoses to access carers, medications, pain management, splints and compression garments. I shouldn't have needed to purchase my own crutches and (not one, but TWO) wheelchairs because the system said that I was not disabled enough. I shouldn't need to decline hearing aids that I need to keep children safe in my workplace because I don't have "a sufficient level of hearing loss".
Sorry for the trauma dump here. You video really opened up a can of worms for me. I guess the system is pretty much the same, even over here in Australia.
I began crying at 46 minutes. ‘When you become a teenager your joints will stiffen up’ is the exact thing I was told as a child going to the doctor for my hyper-mobility. It’s gotten considerably worse ever since and I’ve always thought that I have EDS but I guilt and distrust myself that I don’t have it and that I just have bad hyper-mobility. I’m 20 now, I haven’t gone to the doctors since I was around 13, my ankles colapse constantly and I can’t walk more than 30 minutes but I’m so afraid to go back through the medical gaslighting that was so normal for me as a child.
Thank you for making this video. I've been grappling with the same concept the last few weeks; I was always disabled, but I didn't always know it. I'm one of those souls who went through decades of this dismissal by my family, my doctors, and worst of all myself. I could pretend I wasn't disabled by acting as though I wasn't disabled. All this self-blame you catalogued is baked into the culture, after all. But if you're hypermobile, that effort comes with a toll that able-bodied folk don't have to pay, and you literally fall apart internally. I got to a certain point in my life where all my doctors started taking me seriously, and there was something oddly alarming about that. We got the hypermobility figured out eventually, but not until I was well into my 40s.
For most of my life I walked about 10k a day. Now my foot is literally held together by half a dozen screws, and (I shit you not) it needs more screws, so managing to get to the bathroom and back is an accomplishment. Living this way is quite draining. But minus the mobility aids, I look pretty healthy from the outside, so some people won't ever understand.
Only took 48 years for me to figure all of it out! So so SO relatable.
I don't think I have any physical disabilities or chronic pain, unless you count the injuries I suffered from meltdowns. Regardless, saw a presentation on the autism research institute that we're "the lost generation" of disabled people, which spans gen-z all the way up through the silent generation and posthumously. It really fucked us over. I'm 39 and finding out I'm at the nexus of adhd, asd, and ocd has been a whirlwind and kinda shocking. All that had to happen was reframing "tantrums" as "autistic meltdowns", or "social anxiety" (that haunts me even when I'm not socializing) as "obsessions" and my need for reassurance or to "check" the past interactions as "compulsions"; spaciness or slower to get directions as "disabled first working memory". It's mind-blowing. How much self blame, people blaming me, treating me like I'm not doing enough... So much to take in. My ocd comes out when I write comments, I can't leave any stone unturned, every caveat explored... it is exhausting, so sorry for word vomiting.
My daughter is gen-Alpha, and was in Head Start, Pre-K Counts, Early Intervention, and public kindergarten all with zero effort to get her a diagnosis. She just kept qualifying (or not, in one case) for speech and, later, speech AND occupational therapies! It wasn’t until I took her to a university and private psychologist and she got ADHD-PI, autism, AND dyslexia diagnoses that a school psychologist (at her private school, because she was having increasingly frequent meltdowns at public kindergarten) took notice and re-diagnosed her ADHD-PI/autistic! Apparently public schools and Medicaid won’t test for specific learning disabilities until a child is 8?!?! 🤨 All this by way of saying, not sure this is any better, even now, beyond it being possible to diagnose ADHD and autism in the same person! 🫠
@@misspat7555 ADHD and Autism not being exclusive is one thing, but another improvement is that girls / kids assigned female can actually get more readily diagnosed now. I see among younger professionals that they no longer think an autistic child is a boy who likes trains and _maybe_ there'll be a girl once a dozen. It is better now and it will continue to get better (barring reactionary legislation, I suppose)
I'm only 9 minutes in, and I have to admit that as a disabled person, this video is really hard to watch. Not because it's bad, not at all, but because it's SO accurate. I spent so many years believing that I was lazy, had no willpower, and was overly sensitive. I just needed to work out more, learn to deal with 'discomfort', and lose some weight. I just wasn't trying hard enough. Because every time I expressed that I was struggling with something, these were the messages I got. Even doctors didn't take me seriously for a very long time. I still struggle with impostor syndrome to some extent to this day, although it's gotten much better thanks to a lot of hard work, therapy, and a loving partner who understands me. It's such a sadly common experience for disabled people to spend a long time blaming themselves and being judged for things that are ultimately out of their control (and hurt them much more than anyone else). The symptoms of our disabilities are often seen as flaws in our characters, and assumed to be a result of personal choices rather than circumstances outside of our control.
If you were offered an antidepressant, it might have been an SNRI, not an SSRI, because norepinephrine is one of the three hormones most often associated with pain management. The SNRI Duloxetine (Cymalta) helps me with pain, especially rib pain. PSA for anyone taking antidepressants: If you find yourself getting increasingly hostile, reactive, or otherwise unwell, check with your provider, who may adjust your dose. Especially as we grow older, these medications can help us retain too much serotonin, leading to serotonin syndrome (serotonin toxicity).
three minutes in, and I am relating to almost everything you said so far. The joys of super soft see-through skin... and the heaps of stretch marks despite having been perfectly average weight without big fluctuation all my life. + the bruises! I was assessed for blood coagulation issues because I bruise so easily, but if anything, my coagulation is better than average.
The issue with trying for assessment with things like EDS is that it's always "yes, I am in pain - but it's all just aches and pains occasionally (every day), but I'll just sound as if I'm whining if I bring it up"
I asked my moms rheumatologist about it, she said "theres no treatment or cure so theres no point in getting diagnosed"
I got a similar attitude from a rheumatologist who was pretty clueless about EDS. I think the problem with rheumatologists is they seem to think it only effects the joints.
i got this, too. i was also told that it must be fibro instead despite bringing diagnostic criteria paperwork and telling them about my mum's own experience and journey w getting diagnosed, but was dismissed lol. i'm exhausted
Same same same. When I got seriously disabled I realised i was always lightly disabled i just didnt know i had "pre existing conditions". Now I'm in a wheelchair, wish id known sooner that i was "clinically vulnerable" and now it's too late. FAO younger autistic people - things can always get worse
I hard relate to all you said. I finally got my AUDHD diagnosis at 51, HEDS last year. I’ve been living in pain since age 11. I have scoliosis and kyphosis. And was told that my pain was because of my bad posture, my fault. So I stopped talking about it. The pain is now Fibromyalgia. Getting out of bed takes effort because I have to brace for the searing pain when my feet first hit the floor. During flare ups it’s even worse. Gabapentin didn’t work for me and gave me narcolepsy like symptoms. I’m so used to pain that I have developed such high pain tolerance that when I broke my sacrum (spontaneously… that’s normal 😢) I walked on it for months before someone suggested an MRI. I could go on.
I relate to basically every single thing you've said! I'm not diagnosed with EDS and I'm seriously starting to think maybe I should start asking doctors about it. I can bend my fingers way back farther than most people. I can ALWAYS get out of handcuffs unless you put them on so tight they cut into my skin. I always have mystery bruises. A guy that sat next to me in a class in high school used to like to play with my hand because it was so "squishy" and soft. I was always the slowest runner in gym class, by far. I have IBS. And there's more I relate to but this is just amazing, really eye opening for me. I'm going to look into this more.
I am Going Through It™️ right now, and I feel pretty hopeless about getting the care I need. I think my rheumatologist ruled out EDS, but I related to everything you described. Bc of my neurodivergency, I struggle to understand which things "are so normal they go unspoken" versus things that I experience that most "normal" people don't.
For example, when I had menstrual cramps starting with my first period, I was told that "everyone feels that way" and that I was "being a baby".
But when, at age 38, I gave birth after 48+ hours of labor, unmedicated, I had no idea that I was about to have my baby. (Thankfully I was at the hospital and was being monitored and my nurse sprang into action.) The reason I didn't know: at no point in labor did I feel anything that reached the pain level of my "normal" period pain.
This is the most relatable video I have ever seen. I had almost exactly the same experience, except doctors gaslit me from childhood. Thank you so much for making this!
THANK YOU. I'm also a late diagnosed autistic with hEDS and our life experiences match up in maaaany ways. The medical trauma is also real. We need these awareness videos!
7:20 Okay… I’ll go get diagnosed. I’m convinced. Everything up until this point applied but I was still in denial. But Im heavily modified wearing a back brace and compression gloves daily at the age of 24. I kept telling myself it was the mattress in the dorm in undergrad but I graduated two years ago.
Got my hEDS diagnosis this year after six years of being hand-waved by my GP because I tested negative for lupus. The first rheumatologist I saw "diagnosed me" with something similar to fibromyalgia, despite me repeatedly explaining my high pain tolerance (to the point of sitting through a tooth filling when the anasthetic had all but worn off). She told me to stop taking my pain medicine. The day after I stopped taking my pain medicine I had to leave class to go home and lie down for several hours because of the pain I was in.
It might be irrelevant, but my whole family has EDS, and two of them are basically immune to certain dental freezing. It might be a factor in your dental story. I seem to be lucky in this regard, but it wearing off to early happens to almost everyone else in my family.
Local anaesthetic not working is a known part of EDS.
I was just formally diagnosed with EDS because of this video, thankyou thankyou THANKYOU 😭
Omg that’s amazing! And well done you, for getting your answers! Thank you for sharing 😭
ThankYOU for making this video, i have spent the last 10 years trying to raise the possibility with physios and my GP and kept getting told "oh no you couldn't possibly have that" followed by outdated nonsense. Watching this made me go "that's ME" over and over throughout gave me the push I needed to insist on a referral, and, well, here we are now ❤🦓
Everything you described about pains and tiredness and joints is what I experience but it's the first time I hear that it shouldn't be this way.... They found heart issues but said I'm too young so it's probably nothing and dismissed my worry about the reasons. I thought my stomachaches for no reason and me not being able to stand/hold things were issues from passive self harm and my fault. (Parents used to punish me by making me stand in the corner but they had to give me a chair because otherwise i started to cry from pain). Doctors just said that every issue I have is psychosomatic and bad routine because I was a teenager when I still tried to ask for help. I stopped trying. I don't know what to do. I'm autistic and horrified at the idea of telling a doctor I, a young person, think have a serious issue. They laughed at me even when I showed them THEIR words on my test results and asked "should I get tested for this?"
Addition: i think you won't see this but want to say a big thank you for this amazing video. And... For probably explaining a big part of my life to me. I don't know if i have EDS and scared to try and get a diagnosis because no job wants a disabled person, but I think the self discovery I made from this video is important either way.
This could not have come up at a better time in my Recommended feed. I literally had my DWP PIP appeal yesterday. While the panel acknowledged that the DWP should have given me *some* points, they still didn't award me enough to qualify for PIP. That's nearly 20 months of my life fighting for this that I will never get back.
I too was late diagnosed with autism (age 31 after 14 months of fighting), adhd (age 35, thankfully with minimal fight), and fibromyalgia (age 38 after six years of fighting) and a formal identification of flat feet at the same time (no, really), with longstanding migraines, depression, anxiety and self-identified complex ptsd.
After the outcome of my appeal yesterday, I broke down. I hope that those three people on that panel heard my cries through the door, as they completely dismissed everything that I was saying and made their own presumptuous conclusions.
I don't know that I have any fight left in me. 😞
I never thought of myself as hypermobile, but I now recognize a lot of these things as describing me.
That is, I'm not THAT flexible; moreso when I was younger. I could bend my thumb down to touch the inside of my wrists, pushing with the other thumb; but I knew people who could do that in the opposite direction: touch the back of the wrist. One of my thumbs is double jointed. Because I'm holding my phone with it, that thumb is now bent concave at the joint where it meets the hand.
I was "clumsy," and had a LOT of sprained ankles, but no bone breaks. No dislocations, although in my 30s, I did occasionally have a painful "catch" in my hip socket (remarkably similar to a dislocation in retrospect.)
I have "noisy" ears, "thick" ears.... I'm on 2 heart rhythm meds AND Xanax. Oh, and now I have osteo arthritis, so that changes my entire symptomology....
I have relatives who had frequent dislocations as children. I do believe they have EDS. One of them has sudden surges in heart rate; they know they definitely have MTHFR.
Metaphor: when I was very young, I had an old bicycle; it had a small pedal radius, oxidized moving parts, and tires that were short and thick. Needless to say, it was teeth-grittingly difficult to ride.
That's the sort of body I live in. It moves slower, it struggles against a lot of resistance, and the parts don't work well together. I hated PE/PhysEd from kindergarten on. Everything hurt my muscles; everything made me pant and puff. I thought it was asthma. Or asthma and being out of shape. I knew I wasn't lazy, but no one else seemed to agree.
And though I didn't know it then, I was autistic. Life in general never made much sense to me. I didn't know anything to do to help myself if it involved getting help from other people. They...didn't, mostly.
I'm a noisy self-advocate now. And I do a lot of research. Now I get to add hypermobility to my list of things to study.
it's super weird hearing nearly exactly my childhood in your accent. tho my mom was a nurse's aide and still had the same "oh it's nothing" about everything.
I’ve had a youth of suffering, just as lengthy a list of symptoms. So much so I started studying osteopathy. I was treated like a hypochondriac by everyone until well after I lost the ability to walk. I changed course and I’m on my way to becoming a physiotherapist, my main interest is EDS and Chronic pain. Thank you for speaking to this topic. I feel you.
One time I lost the sight in my bad eye, and didn't think to go to an optometrist for three days. It took a drunk friend pointing out my eye looked milky white, like I had cataracts, on the third night. I say bad eye, because I'd just grown used to accepting that it was normal ,for me, not to see very well out of either eye, but especially the left.
Also hearing the "oh bad posture" etc, reminds me of the years of "reading in poor light is bad for you"/"reading with a book too close to your face is bad for you". I have light sensitivity, as such that I get dizzy and disorientated if I go from a dark building to broad daylight. And yes being in a well lit room for a normal sighted person hurts my eyes, and gives me bad head aches.
I “present” really well due to my intelligence. I have a litany of lifetime problems - now made 10 times worse by long covid. Love ya!
I have EDS too. Everything you said in this video is absolutely spot on, I’ve gone through the exact same thought process and heard the same things from my parents and others. My three daughters all have EDS too. My youngest has been given extra support and help through school and college and my mother told her to stop saying she’s disabled as she’s not that bad and not properly disabled. Needless to say, she doesn’t have EDs.
I only watched to 3:41, but literally all of the things you describe I have - double jointed, popping joints, NIGHTMARISH PE classes where everyone would mock how I run or how I can't do anything other people do, soft skin, my mom making fun of my crooked bones or posture etc etc.
The issue of not knowing that a period of reduced activity can result in major degradation of quality of life is huge and so rarely discussed.
I never knew I was hyper mobile until a relatively minor knee injury combined with a family emergency reduced my activity level for a year and I came out the other side feeling 20 years older. I really wish I had known.
I'm a seemingly less common example of a "middle functioning" disabled person in the sense that it was pretty obvious from a young age there was something wrong with me but I didn't get diagnosed until late childhood/early adulthood. I was delayed in development and required a lot of support in certain areas but I was also a hyperlexic gifted child so I didn't crash until middle school. At 12 I needed to be homeschooled due to anxiety and sleep issues, at 14 I was semi bed ridden due to orthostatic hypotension. I was diagnosed with autism at 18 and with EDS at 25. Before that I had a whole bunch of other, more minor diagnoses. I never got evaluated for disability status despite clearly needing a lot of support. The reason? Everyone, including doctors, told me that if I would get a label like autistic or disabled, my life would be over. I wouldn't get into uni, I would never have a job, and I would probably end up institutionalised. I was told it was better to struggle without the label than get accommodations and support with it. So I pushed myself till breaking point, multiple times, and I still have a lot of internalised ableism to unlearn. Sometimes everyone knows you're disabled but they just won't tell it to you cause they think acknowledging that is paramount to a kind of death. Unfortunately that sometimes leads to actual death.
I move in ME/CFS and POTS spaces, so I knew about EDS, but hearing your description really got me thinking.
Many things sounded like you were describing my childhood and my believes about my body.
"Everybody else is able to do it, so they must exercise more than me"
"I must have bad posture, that's the cause of all my upper spine problems"
"I am just pain sensitive and should learn to suck it up"
"I really need to crack my neck to relieve the tension, but people find the sound disgusting so I will wait in pain for a little longer"
Now the big question is how to bring it up to a GP that's already annoyed by my general zebraness?
During school I'd sometimes cry from period pain, I'd most be ignored because I'd also cry due to anxiety and sensory overload and I'd refuse the offer of a paracetamol and a lie down because I had no way to catch up on whatever I missed.
One of the issues I run into with people's misunderstanding of EDS is the fact that it isn't just one thing. It's actually a group of congenital conditions based on the mutations of genes that code for how connective tissue is built in the body. So, while connective tissue is 'everything soft' (kind of), not everyone with EDS will experience symptoms related to all of their connective tissues.
My father died at the age of 32 as a result of complications of vascular EDS (vEDS, known as type 4 at the time). Before him, there was no family history. I don't know how the likelihood of transmission works for other types, but from the last conversation I had with a geneticist (so, so long ago), my risk of having it was 50% (plus the baseline rate for random mutation). As a dominant trait, I wouldn't be a carrier without suffering from it; if I had it, it was going to play a role in my death, whether that was due to organ rupture, internal bleeding, etc. that was either spontaneous or brought on by some instance of physical trauma. I never went back to get tested, but I knew the symptoms in detail. A few years ago, I made it past the "should have seen something by now" point, and my family let out a breath we'd all been holding, figuratively speaking.
But, throughout my life, I've had many people explain to me what I would be experiencing if I DID have EDS, and their descriptions were all based on a fundamental misunderstanding of the different types. Not only that, though; their understanding was centered on only the most *extreme* presentation of *one symptom* of the *most common* type, and required that EDS was only present if visible, i.e., if someone were wheelchair bound. It was legitimately painful to think back on all of the suffering my father went through, the ruptured aneurisms and hospital stays that punctuated periods of full mobility and no obvious symptoms, and listen to these ignorant people suggest that he was somehow... what? Faking it to game the system? Lying to garner sympathy?
I'm probably preaching to the choir, but I would ask that anyone checks their knowledge of a particular medical topic before speaking to an experience that isn't theirs (and, even if they do have experience, not assuming that theirs is the only experience).
OMG, this. "You're just lazy." "You just need to be in better shape!" Between my undiagnosed (until my late 40s) autism, my thyroid issues and hypermobility (afaik, it's not EDS), I have decided to just celebrate whatever wins I manage to claw my way into.
I'm only 10 mins in but as somebody who is 36 and has discovered they have hEDS / MCAS / POTS / ADHD / Celiac in their recent adulthood I am crying 😭
My (self) stretched lobes healed so well when I took them out you can't even tell I had them at a 0 at one point
I recently got in to a specialized EDS clinic for specific support with people who really understand and can refer me to others with the EDS context who understand that.... all of my problems are related to one genetic issue, not a bunch of random symptoms
"I was prescribed xanax, never took em"
You dodged a bullet, I did and completely ruined half a year of my life. Withdrawals are hell and doctors can get you on benzos but will not help you get off. I just barely got into a rehab facility which got me off finally but was left with symptoms that still last today.
idk if i'm gonna be able to make it through this video bc i'm 5 minutes in and might cry. i wish my experiences were unique, it's not really comforting to know i'm not alone it's just sad that other people have suffered just like me.
It has taken me decades to learn that what I thought was normal wasn't. It's like hiking with a 150lb backpack while everyone else had a little hand bag. Yeah you can still walk but it ain't easy.
I have hypermobility...don't know if it's full blown EDS.
But so many of these symptoms. Ugh. Esp the stomach and hand problems. Even holding a coffee cup for too long hurts. Puts painful pressure on my joints.
Its crazy how much people resist believing it could be a deeper issue and just tell you to write it off, quit whining, stop being lazy, etc. This happens for sooo many issues but its so terrible for certain conditions.
my friend has EDS and while he was starting to figure that out i started to talk about my i now know symptoms. and I would bring them up casually right like its just a friday nothing new here. I remember the day he took my shoulders and looked in my eyes and asked "You know not everyone is always in pain, right? You aren't suppose to always be in pain." he changed my life in just that sentence, because i didnt know, i just thought i was weak, and everyone else handed it better than me. I now know i also have EDS.
I’ve never heard of someone else with neck subluxation like mine till you. I have so many childhood memories of turning my neck to fast. Feeling that dreaded pop, and being immersed in sharp cramping pain that spidered across one side of my skull for 20-30 secs of agony before it would subside.
Doctors shrugged it off. My mom witnessed a few and would rub my back, but didn’t seem worried.
It gave me years of anxiety till I learned to always turn my head slower. Now I can go a year or more with experiencing it. Occasionally I’ll get surprised, turn to quick, and have a reminder. I still get terrible tension headaches at the base of my skull.
Thanks for helping us be seen❤
I've never heard anyone else tell the story so accurately! It too took me 25 years to learn to trust myself.
I'm halfway through and need to take a break to emotionally regulate, so I haven't finished yet. This video made me feel so seen and reopened so many emotional wounds from being dismissed all my life. I'm currently diagnosed with hymermobilty, but I definitely have hEDS and am struggling to keep myself motivated to keep advocating myself. This video is so helpful to keep myself going. The line, "There would be things that you simply cannot do no matter how hard you try. You're not even trying, are you?" Hit me to my core.
It took me 12 years to get my hEDS diagnosis from just the start of me asking about it, NOT the start when all my pain and joint issues and heart issues began but when I LEARNED ABOUT EDS. I had an injury around 11 that I never have come back from, and my 20s have been doctors insisting I destroy my joint more instead of a wheelchair until just last year. Everything can feel like its against us in this diagnosis or with rare diagnosis in general, thank you so much for this video I really truly hope that the people who need to see this do find it.
This video hit me hard. I've spent my whole childhood with severe chronic migraines and digestive issues that constantly sent me to the ER, but no parent or doctor thought to look into it. Nobody ever thought me being bedridden for half the week (sometimes a full week or two) in constant pain and vomiting, was an issue. I was seen as making it up to avoid school, so I was still forced to go to school and collapse there. My grades were awful because the brain fog from my migraines was constant, I couldn't sleep from being in non-stop agony, and I hadn't known I had ADHD and autism, but I was scolded for being lazy. I'd end up in the ER over and over because of gastrointestinal issues, and my parents just laughed it off because gastrointestinal problems are funny despite the situations being reoccurring life-threatening medical emergencies. They insisted it was normal for this to happen because I don't eat enough rice or exercise enough or whatever.
I'd spent my childhood truly believing I really was just a lazy person for being tired all the time. Everyone told me nothing was medically wrong with me, I was just lazy, so I believed it. I only started getting diagnosed in my mid-twenties. Getting finally diagnosed after years of gaslighting, I felt...relieved but also so, so angry. I've been seen by multiple ER doctors and specialists and have had surgeries on my intestines but no doctor thought there was an issue. Even with all the medical documented proof of my conditions, new doctors will refuse to believe them over arbitrary reasons ("You can't have gastroparesis because one of the symptoms is being underweight, and you're not underweight." "Migraines? You look fine to me right now." Those sorts of things.)
I've had a doctor put me on a diet insisting would help my medical issues, only it made them significantly worse and landed me in the ER more frequently than before. When I told him, he brushed me off and just praised me for 'losing weight and looking nicer' which turned out to be his whole reason for putting me on that diet (I was not overweight. And even if I was, that's not an excuse for deliberately putting me on a diet that he knew would exacerbate my symptoms). People don't believe I have disabilities because I have a full-time job. I'm FORCED to have a full-time job because I need to afford to feed myself and pay for medical expenses. Disability rights are garbage where I live.
As an autistic and ADHD, very likely HEDS person who presents female, I felt all of this to my core. All of those gaslighty comments that people make really played a number on me over the years ("it's not that you can't, but that you won't" takes the cake). After I discovered all of these things (on my own, as no medical professional would even look at me sideways because "I look healthy" to them - yay for masking), it took years of introspection to reduce the amount of internalized ableism that has accumulated over the decades. I'm glad you finally found your answers. I hope you can also find some support. I know I won't have any, other than what I can build myself not, but at least you and a few more folks I hope do get the support and understanding you need.
My gods... While my experience wasn't identical, it follows so closely in the pattern it was like someone who is somewhat aware of my life, reading it back to me...
I'm not hypermobile nor is my skin stretchy... Which is why EDS was ruled out for me when I tried to get my constant pain diagnosed. Ended up with a Fibromyalgia diagnosis... But with even having experienced that "sit still for a while and completely fall apart" last year. Having struggled all winter relearning how to even just walk after a particularly rough depressive and stress spell made me bed-bound for 6 months... I think I need to give EDS another look. Cause yeah it sure seems there's more broken in my body than just the nerves being dialled up...
Thank you for this video. It's made me feel so much less alone...
I've learned EDS doesn't have to have hypermobility (I mean, it's literally a subtype, hEDS). Because I also don't have it - but I also have nothing diagnosed. Except muscle hypotonia. I don't know how much that explains on its own.
Considering how much I read about it the last year, I'm just assuming there's something with the connective tissue, but what exactly, I do not know.
Mitochondrial myopathy here. I have a lot of similar symptoms - and am classified as disabled. I was a part-time wheelchair user as a kid.
And the self-loathing, the body-shaming (even at my tiny size), the imposter syndrome, the feeling that everyone else must just be more driven, more motivated…
So. Familiar. You really touched me with this video, Ponderful - it’s comforting to know that this unique feeling of being “not disabled enough for anyone, including yourself, to understand” but also “too disabled for ableist society” is not entirely unique at all.
havent finished the video but this is such a needed video