As a healthcare professional, and a woman, I can say it’s not an “inconvenience” when it’s their JOB. If they treat you that way, they are WRONG. THE END.
@@emilywarren3053 Agree, completely. That’s why I say it as often and as loudly as I can: They are WRONG. THE END. I know I am just one small voice screaming into the void, but my voice is all I have - and I won’t stop using it.
The "its ok to inconvenience people" is exactly what I needed to hear. I've been having flares non stop and I'm a college freshman trying to change dorms to a quieter location. Long story short everyone ive been paired with are partyers and wouldn't respect my needs i was about to settle to not be a burden on others but I'm going to go back to advocating for myself. Thanks for always saying what I need to hear!
@karenennis6109 Sadly because I have seizures and migraines and do not use a mobility aid they are hesitant to give me those accommodations. Thank you for the suggestion!
@lvineyard3738 My bonus daughter has seizures as well, couldn't leave her in a room by herself, they did take that in mind when they.placed her in an upper level dorm, more apt to be quieter, even as a freshman. Accessibility services should help you out. You don't need a medical device to get help. Good luck
It would be nice if they could offer disabled students cohousing options with other disabled students (maybe in a dorm with ADA compliance and accommodations) so they can be around people who at least understand their needs, and you could look out for each other. And they need to recognize that people with disabilities don't all look the same or have the same needs. Sounds like you could use a disability advocacy group or student alliance. Does your school have one?
I have the captions on and I literally screenshotted “it’s okay to inconvenience people who are doing their jobs”. I really needed to hear that right now
Chronic illness: constantly asking yourself if this new symptom is from issues you already have, or from something new. I'm glad we have this community, to share stories and support. ❤❤
This is so real. I’m so grateful to the PCP I called last year and said, “I can’t explain how, but I’m having this fatigue and brain fog that I can tell is different from the Long Covid ones.” And she did not question me, made an appointment right away, and ran as many blood tests as she could think of. Now, we’re pretty sure I have lupus, and if I do, we caught it really early because my doctor took me seriously. I wish everyone in the world could have doctors like that. I’ve had too many in my life who were nowhere near as supportive, and I’m so grateful she was.
The time a neurologist said my seizures were all in my head, hence not worth his time. He prescribed me pills he didn’t tell me were habit forming, with no refills and nasty withdrawal symptoms, and never returned my calls or therapist’s calls. May an umbrella open in his belly.
May he step on legos, have a strange rock inside his shoes, or in the soles of his shoes that can never be removed, and constantly step in wet puddles while wearing his favorite socks.
I was having spells that I was having a hard time verbalizing. The odd part was that it happened exactly one day a month, usually on the same day of the month as the previous month. For that day, it might happen a dozen times, then the next, nothing. A month later it would start up again. BTW, I'm a guy, so it's not so "obvious". Doctors thought it all in my head (NPI). My cardiologist couldn't find anything that would cause this (my heart has had plumbing replaced and significant modifications to its electrical system). They were taking it less and less seriously. That is, until one of these spells turned into a full-on grand mal seizure (five minutes later and I'd been driving my wife, DIL, and granddaughter). That got some attention. In my case, the drugs have worked wonders. Though the first drug was a classic "can cause depression and thoughts of suicide", right out of the TV commercials. Snowing?! Are you Mrs. Claus?
Yeah the last time I saw a neurologist she told me that I had to change my entire lifestyle because I was lazy (not in so many words but it was insinuated). I actually have a debilitating chronic health issue. She also prescribed me pills, but in my case they messed up my brain. I reverted back to sucking my thumb (something I hadn't done since I was a child) and now I twitch before going to bed. Kind of like mini seizures. I have no control of my twitching. It's really frustrating to know if she had listened to me I wouldn't be dealing with these issues now.
Having worked in the medical field, I have seen people become very desensitized and in some cases, highly negligent. If you’re going to go to the hospital, you have to remember that the people there are not your friends, they are also not there for you to do them favors, and that a little bit of advocacy can save your life or the life of a friend or family member. You have to advocate for yourself and understand how the law applies and how it protects you as the patient. Sometimes people working in healthcare need an attitude adjustment, because they can end up costing a Hospital millions of dollars in settlements, not including the reputation damage that comes with one or many individuals screwing up and killing a patient because, hey, they were just having a very long and miserable day.
Yep. I've met so many medical "professionals" who just don't care anymore. I've been left in the waiting room passing out every 5 minutes while more urgent cases like "stubbed toe" and "dry skin" went before me. I've been diagnosed with "drama" that I later had surgically removed. I've been promised one med and had the doc send the nurse in with a med I'm allergic to instead, only for the nurse to try to get my partner kicked out "for assault" when she stopped the nurse by blocking my line (yeah, apparently refusing to open your hand when someone else tries to pry it open is assault). I've been told I don't have conditions I'm literally diagnosed with. I've been told a common side effect was my imagination. I've had my trauma thrown in my face. I've been yelled at to stop being scared. I've been threatened with a psych hold for crying while in pain. And the hospital never cares.
Thank you so much for this explanation, it explains perfectly why you waited so long to get the urgent medical care you needed and I fully understand it now. And yes, this video format is very nice, I'd love to see more of that! (I still think the dojo was criminally negligent by not calling you an ambulance, though, but that's not within your sphere of influence.)
that last part is something i have trouble grasping, the inaction of the people in that room. was it lack of knowledge, the fear of burdening someone with medical bills? it's scary to think about. I'm really glad Jo eventually reached out to that UC doctor and followed his advice of going in.
TRUTH! My accident took my leg, my (productive) brain, my dignity, my patience, my friends, my trust in doctors, insurance, my life.. for all intensive purposes, I died that day. I was also born that day into the rest of my life and that often sucks too but not enough to keep me down. Keep up the brain work Jo. It's the opposite of easy and can take you down if you let it. It took away everything I loved, so I found new things to love. Stay awesome..
Yes the "drug seeking" ER nurse told me "next time just use yiur oxy it will work" ummm no im here for the pain cuz the oxy failed to work after an hour after taking it.. was given oxy for my tonsillectomy and then gaslit cuz i wanted something different "sorry cant give you anything stronger" not looking for stronger than oxy just different... After 3 days was given Dilaudid for the pain
I rolled my ankle stepping off of a curb in June of 2023. My doctor kept dismissing my pain every time I saw him, telling me it could take a year for it to fully heal even though it ached and throbbed no matter how much I rested. After 10 months of being in pain, I finally changed providers and saw an amazing NP who immediately ordered imaging and referred me to a podiatrist. I had x-rays and an MRI, got a cortisone shot that unfortunately didn't last long, and had an arthroscopic procedure done a month ago. I'm already in less pain than I was before surgery and can't believe how long it took to get here from such a seemingly simple injury. I only wish I had advocated for myself sooner!
I have a friend who has had so many infections, she has built a tolerance to several of the most common antibiotics so she has to ask for the stronger (more expensive) types. I've lost count of the number of times doctors have forced her to "just try" the cheaper stuff and she's ended up in hospital less than a week later. I hate it so much and wish patients would be listened to more
That's... odd. Bacteria develop resistance to antibiotics, not patients. People can develop tolerance to drugs that affect their neurotransmitters or stop responding to biologic agents, but antibiotics work by attacking the bacteria inside the patient, not the patient themselves. If your friend is fully clearing her infection when she is treated, it shouldn't affect the next infection (unless she happens to coincidentally get infected with several drug-resistant bugs in a row). Not saying your friend is wrong. Maybe she metabolizes common antibiotics differently from most people. Maybe there's some kind of underlying immunological cause to both the frequent infections and lack of response to antibiotics. It's worth investigating further, because that's very unusual.
If she’s tried this already ignore me. But it might help to print out a two-page, straightforward timeline of had this infection -> tried this antibiotic -> ended up in hospital-> given this stronger antibiotic-> infection resolved. And just hand that to the doctor while advocating. It should help if they either don’t believe her or if they have to make the case to the hospital or insurance to allow the stronger stuff.
Oof, needed this. Disabled young woman (hit fully at 22) and I've also had doctor's tell me to my face "That's not a thing." "I'VE never heard of anyone having that experience." All with the stereotypical look over &/or eye roll. Even tho, one of those "never happened before" crippled me in literally 2 weeks. Speaking of, if you have EDS and are scheduled for surgery, ESPECIALLY if you're on birth control, make sure your doctor knows!! I got a blood clot after surgery (possibly due to family medical history) and the blood thinner wreaked absolute havoc on my body. It made me bedridden for over a year and two years later I still haven't fully recovered. I'm still waiting to see what type of EDS I have so I can give more accurate/specific information but that's what I've got for now. Stay safe out here y'all, you deserve to be on your team❤
Needed that. Okay, the medical system in Canada is different, but the bullsh*t is still there. But, I ALSO have been TOLD by 9-1-1 and the EMTs, "Call us, that's what we are for." (parents falling, car accidents) And, "WHY DID YOU WAIT SO LONG?" (migraines that last a month, UTIs, shingles)
I'm not American. But I just had a wonderful experience today with a doctor. I thought I would share it. Cos I know situations like Jo's so good since 2022. And before too, only a little. So... I have an illness that is pretty much unknown to the world and there are almost no treatments. But a few symptoms can be treated. Somehow I still find myself stuck in helpless position. Cos all doctors turn away from me, don't want me to be their problem. And just lie to my face, while it's all a matter of googling the issue. However!! I had so much stress and bad experiences with orthopedists in my city...I drove to one an hour away. And low and behold...he sat down with me yesterday...and listened to my story for a full 15 minutes. Kept asking me questions about my journey with that illness. Not only about the issues in my joints and what not, but my entire situation. Like not being able to sleep, not being able to lift more than 2kg, having constant issues forming full sentences etc etc etc. And in the end, I didn't get the PT, that I was asking for. He said, he look into it. And he did! He called me back a couple hours ago and expressed how happy he was, that he learned something about this and now knows a bit more. And he asked ME for the specifics that I wanted to have on that PT prescription. 🥹🥲🥲🥲😭 I was so blown away. I was so happy...I was again sitting in a waiting room in a doctors office when his call came and I just told the doctor I was seeing... telling them how he listened to me and my doctor went: "Listened, a orthopedist?!" And made a face like: Respect! That's like a winning lottery ticket. 😅🫣 So you see...it really really was a super nice experience! I was so stunned.❤ Made my day! My month!
A few years ago i phoned a friend because i'd been having pain for a week and had started having breathing problems she had to pretty much tell me off and made me phone an ambulance. Even when the paramedics were putting me in the ambulance i was convinced i was wasting their time! The week before i had brought up some symptoms to my doctor he looked at me, looked at my records and said it was because of my diet. Turned out i had a gallbladder infection and had i left it much longer it could have been a hell of a lot worse. I've had so many doctors over the years treat me like crap because i am 1 a woman and 2 fat.
I'm so sorry that happened. Even if a condition might be a result of your weight and/or diet, it doesn't mean that you don't deserve proper medical treatment. A doctor should listen (especially if symptoms are new!) and order tests if necessary. Their job is to help you feel better, not to judge you.
Oh no, you had such luck that your friend told you to go. I know a guy who had gallbladder or was it kidney infection and he was gaslighted so one morning he was found dead. So sounds very similar, scary how often things like this happen. Important to not give up if you have health issues but it can't be easy when they call out people for eating too much it as drug seeking.
My first and only gallbladder attack, I had no clue what was happening. I was sure I was having a heart attack and dying. My husband and called 911. when the paramedics arrived I was lying on the tile floor of the entry way moaning - the cold floor was the only place that wanted to be. The paramedics kept asking how much i had been drinking. We kept saying none at all, but they didn't believe us. They begrudgingly transported me to The hospital and treated me like crap the whole ride in. Thank goodness the ER doctor's were better. I was in for emergency gall bladder removal in less than an hour. I was super sick - spent two weeks in hospital and had to have two more surgeries to fix everything. I never got an apology from the paramedics. If they had the final say, I would have died, I had a complete blockage and my liver and pancreas were shutting down.
Let me tell you my "is this a stroke" story. 61 year old male at the time in reasonably good condition. 35 years earlier I went through EMT training. Never worked in the field, but that was not the intent. One of the things I learned was there are some symptoms NOT to ignore. One of those is a stroke. So back to a few years ago and as I'm driving to work, I felt the right side of my face get a little numb, and maybe a little blurred vision in my right eye. A few minutes later I get into work and immediately look at the mirror and do the smile test. I really don't see anything wrong, but the numb is not going away. Deciding to call the paramedics was not an easy decision - no one wants to admit that you may be having a life altering event. Medics show up and did a few quick tests and also don't really see any frank symptoms. However, they load me up and code-3 to the local stroke center. Within 10 minutes of being rolled in the door, I'm in a CAT scanner. Everyone was taking it very seriously. Turns out there was no indication of a stroke. An hour or so later I'm feeling fine. 26 hours, another CAT scan, and a MRI later, and still nothing. Neurologist said it might have been a baby TIA, but there was no real evidence to support that. However, everyone from the medics, ER Doc, nurses, to the neurologist all told me that I made the right call by not ignoring it. As you said, the time element with a stroke is critical. In other words, listen to your body!
No! It's amazing to be a male! Men get taken seriously! Do you not see the difference, proven in actual medical studies, between women's treatment by doctors and men's?
I’m sorry that this happened to you! It must have been quite the scare! In this case you had all the cards in your favor with being a man in his 60s, a demographic of people who have a lot of problems with strokes. Sadly enough for us women it is a different story… I had a TIA at 22 years old. I had clasical stroke symptoms and my primary care doctor (a woman) arranged for emergency transport by ambulance to a stroke center. The first things I got asked in hospital was if I had anxiety and if was on my period or might be pregnant. As my symptoms got a bit lighter they only gave IV fluids as it must be a migraine (without the symptoms of a migraine) and wanted to send me home without a CT scan. My dad was quite the hero and he had made some video and photo’s of what was happening to me earlier (right sided face paralyses, slurred speach, difficulty using the right side of my body) He was so angry on how I got treated and what got asked. After that he showed everything to the doctor and asked for a scan… The medical world is quite different when you are a young woman… and medical gaslighting is something that happens daily and can cost lives.
Glad to hear that you most likely had a TIA. A few years back, I was at an event away from home (only like an hour away, but still not at home), and I got up and was feeling a bit off-balance, listing a touch to the right, but it was slight enough that it only seemed relevant in hindsight. I was doing a volunteer position that required a lot of typing on a laptop, and I noticed that my right arm was feeling a little weak and I was having an increasingly difficult time holding it up level with my left, and that's when I called my husband to fetch me and take me to the doctor. The medical staff pretty much got me admitted more or less immediately and on meds for my far-too-high blood pressure. The CAT was inconclusive and they said it probably wasn't a stroke. The MRI, however, told a different story, and it they ended up keeping me overnight for observation. I got off quite fortunate, as it started while I was still asleep. Meanwhile, my husband had a brain bleed with _actual hallucinations_ and didn't even tell me what was going on, with me taking him to the ER _the next day_ when he finally started to communicate that he was having an issue due to the fact that he'd stopped being able to read. 😲 He stayed for a week, but the doctors were unable to determine what had caused it, only that he wasn't in any continuing danger. He, too, was incredibly fortunate. He's lost a small bit of his memory and has minor bouts of aphasia (mostly being unable to recall words or sometimes mixing them up when speaking), but is otherwise largely fine. But if he'd said anything at the start, he likely wouldn't even have that.
I am trying to tell myself over and over that its ok to take up space. Its ok to need things. Its ok to rely on others sometimes. Its ok to be an inconvenience. I have a lot of trauma in my life that has repeatedly given me the message that these things are not ok, and even though the trauma is over it takes a lot of work to undo that internalized message. But only I can make those changes within myself.
Those are big ones for me. I'll add that I am trying to get past the belief that I would die before 18. And 21, and 25. No, you are going to live to 80 years old. You deserve to have as healthy of a body as you can, you deserve a career and education, you aren't going to waste it when an allergic reaction takes you out. I got past the dying young thing, now I'm trying to convince myself that its okay to have goals, it's okay to have long term plans. I most likely will live long enough to see them through.
We all need things sometimes! Even when we need things that aren't compatible with what someone else needs (e.g. me and my friend are both having a panic attack right now and need someone to be calm to support us), nobody is wrong for that. We can figure out another solution (we each call someone else) and reconnect later. And we are both okay, it's okay to need things. If you would think it's okay for your friend to need things, then it's okay for you too! Sometimes it helps me to think: if I set boundaries/state my needs, my friends see that it is possible, and that can encourage them to do it too. I am trying to build honest, authentic friendships. I can't do that if I lie about my needs! But it's also just what you deserve. Your feelings are important and you deserve to take them seriously. ❤
Oh my God. I know that feeling of doctors laughing at you when you feel so bad. I thought I had a stroke awhile back it ended up being thunderclap headaches. They treated me like I was acting like a puss. I couldn't hear or see out of my left side. This video is SO IMPORTANT. F those doctors and nurses. They get paid enough to get mildly frustrated.
I know a bunch of us commented on your stroke video that you should have gone in immediately. Thank you for making this video! I'm sorry doctors have been such assholes, you and all of us deserve to be heard! Thank you for reminding us all that it's ok to "inconvenience" people! 💜
I really appreciate how you advocate for people to trust themselves, take care of themselves, listen to their bodies. It's a message we all need to hear more.
Ironically, I think hospitals can be one of the worst places for discrimination. Especially if you have any kind of disability. Medical trauma is something that isn’t commonly talked about, so I think it’s a good thing that you’re talking about this.
Try seeking physical health care when you have mental illnesses... Oh, boy! The gaslighting is out of this world. I literally waited 1,5 WEEK when I had a BLOOD CLOT in my leg, because I knew they were gonna dismiss me and think I'm hysterical and crazy. Yeah, when I finally went in it was a blood clot, that could've traveled to my lungs and killed me any of these days I waited. If we talk about the gaslighting in psychiatric care it's anything from being rude to meeting doctors who literally LOSE their LIECENCE after being convicted of PHYSICAL ABUSE. He had me on section when I was 16, he laughed at me, insulted me, said I got what I deserved, forbid me from having contact with my parents, and I was stuck there for 3 months (no outside walks) each three times I was in that year. I looked at the definition of emotional abuse, and their treatment of me fit perfectly. I remember once I started crying because they were bullying me, and when I cried they said I could come talk to them if I was feeling bad. "But you're the ones who make me feel bad!" I said. My only friend was my diary which I wrote in constantly. Yeah, until they took it away. WORST year of my entire life. If I had to go through it once more I'd rather kill myself. I was in acute, severe anguish day and night for over 12 months. Then I got medications, THANK GOD, and I turned back to the living. I'm literally in therapy now for my health care traumas. It feels SO WEIRD to ask the psychiatry for help when they are the ones that have damaged me so. It's like a battered woman going to her abuser for therapy. It's so sick. But my current therapist is really good. Even though I hate health care as a whole, there are some hidden gems that might actually help a bit. Oh, did I mention they diagnosed me with borderline because I have so "unstable realtionships" with health care professionals? Turns out I have NO problems towards other people in my life, and had NO problems before seeking psychiatric care. I guess it's the ultimate gaslighting - we've traumatised you by horrible treatment, but instead of acknowledging that we call your crazy and find a new diagnosis for you. It's a fucking JOKE!!!
Medical gaslighting is real and it’s very nuanced. Your experience, or anyone else who has experienced it are valid. I had a seizure and went to the ER afterwards because I didn’t know what the heck happened. I was dismissed by the doctor…I overheard him telling a nurse or another doctor that I was “having an episode” and that “he’s on an antipsychotic”-An antipsychotic that is comfortably controlling my Bipolar II disorder, and had been for years, thank you very much. I was discharged from the ER and was very pissed. I went to a non-emergency neurologist and yeah it turns out that I probably did have a seizure due to my medical history. F*** that ER doc! I’m not gonna go to the hospital if I don’t seriously think something is wrong, like wtf…
I’m so happy you got help in time. I work in the medical field as a registered dietitian and I can’t tell you how many of my patients are scared to go to doctors and or even scared of me because of negative experiences. It’s really sad.
This video is just making me reflect on how much I rely on knowing as much as or more than my doctors about as many things as possible, which isn't actually feasible to maintain in perfect condition, much less in a situation with neurological damage. Much less for, yanno, most patients. It's a really rough sphere to self-advocate in. Thanks for this.
I needed to hear this right now. I've had four weeks of non stop nonsense (we're five antibiotics, an antifungal, an allergic reaction or 3, probably kidney stones and so much more so far). My most recent trip to the ED I told them all to go f**k themselves after keeping me awake all night then showing up at 10am (had been awake for 26 hours straight) to tell me everything is fine, have some antibiotics we know won't work, be super dismissive of my concerns and be 'you have a urology appointment in January what's the problem?'. I don't normally lose it like that but I'd done exactly what I was told to do, I was exhausted and in pain and nauseous and hungry (it also wasn't directed at any one person, rather at the system more generally). I do everything I can to remember that I'm not in the wrong for following advice, for listening to concerning symptoms. I can't possibly know that my blood tests are fine before they do them. I'm tracking BP/pulse/sats/temp at home and only go in when I need to. I also have gotten more confident (and insistent) that access needs are met - including refusing to go back onto the ward until a solution was found that allowed me to have my wheelchair somewhere I can independently get into it, after them moving my chair meant that air freshener triggered an asthma attack I couldn't escape on a recent admission. But it's hard. Nearly 20+ years of near relentless gaslighting and nonsense gets to you in ways that are hard to predict.
This idea of being a burden or believing that you, the person in need, are somehow wrong bleeds over into plenty of other sectors, too. I’m a social worker, not in a clinical setting, I’ll never be working with someone in a life or death scenario, but, I have clients call me so often and open up with “I’m so sorry to bother you.” Uhhh - you’re *sorry* for asking me to do my *job?* It’s always been frustrating for me when a client says something like that, doubly so because I need them to tell me what’s going on so I can advise them properly. We really gotta shift this whole mindset - it’s such an engrained, cultural thing here in the US. You’re probably right about how it’s stemming from how we interact with healthcare - I’d never made that connection before, but, I think you’ve hit it.
I just love seeing your face and knowing you are holding on and living life to its best... Now I must say I'm also fully supportive of you doing that 100% in private... but you're amazing, and we need all the amazing we can get...
Thank you so much for continuing to share. I lost my leg 2 yrs ago and suffer from PTSD from my life and time in the service. You continue to amaze me and help me look at what's going on in a different light. I hope and wish the best for you always! BC
I have been misdiagnosed so many times. Everything was mental health until it was PCOS and Endometriosis, and then it was a labral tear in my hip socket, adult onset daily migraines, and TMJ. There's more...and now the ER thinks I'm medication seeking. No, I'm legit injured.❤❤ love you, Jo, and your pajamas are so cool!
I went to the ER because I couldn't breathe and I felt like I was having a heart attack. The doctor treated me like I was delusional. Dug his fingers incredibly hard into my chest and then told me it couldn't be a heart attack because I said "ow" and they don't cause tenderness on the skin. He gave me an antacid and sent me on my way in tears. Turns out it was a full blown panic attack and they literally didn't consider that or care even if it was. Years later and I am terrified of ever having to go back.
Oof, I'm really sorry that happened. How absolutely insensitive :( I get panic attacks too and they do feel that intense, I wish they had been able to recognize what was going on or at least not be jerks about it!!
The thing is that even if you hadn’t waited and gone straight to the ER, there’s a good chance you would’ve been dismissed and still had to wait until the damage got visibly worse. So much of it is down to luck. Your message still stands though, that our own fear of being put down yet again shouldn’t be a factor in diminishing our chances of getting help.
I really enjoyed this chatty format, Jo. As someone with chronic pain issues for the past 23 years, I now have an amazing primary care doctor who advocates for me with such goodwill and encouragement; I know that I am so blessed. He sends me to specialists (now they haven't always been as helpful as I would like, but some of the issues are about opioid meds which doctors, even pain management doctors, get tetchy about. Sigh. Some people *do* need these meds at higher doses than doctors are willing to provide. Frustrating. I'm looking at yet another surgery (likely spinal fusion) in the near future. Your message about not being worried about inconveniencing people is one I need to take to heart. Thanks, Jo! You inspire me!! God bless you!!
I just got a new PCP at the beginning of the year and she is absolutely incredible! So incredible that my wife has switched over too. When we first met, she walked in the room, sat down, touched me on my knee, and spent the first five minutes asking me to tell her about myself. She didn't want to know about my problem, just tell her who I am. It was very touching. I've seen her several times since then and she has been super supportive. I never feel rushed. At this point I trust her completely and will do whatever she recommends. As I said to my wife just a few days ago, even if she were to make a mistake, I know that she has my best interest in mind. Having a great PCP is invaluable.
Annoyingly most of us who need painkillers try to limit the amount needed by themselves even without "professional cautioning/intervention", and medicating further down than "this makes it manageable" is extremely rare as we know there is always the chance for a flareup on top of whatever we're feeling which requires more pain meds.
I've dealt with medical gaslighting as well on multiple occasions, and it IS traumatizing. It scares people from seeking help, and causes so much more harm, the one thing they swear an oath to never do. It's important to talk about it and bring awareness and solidarity. Thank you for sharing your stories with us Jo! I'm so sorry you went through that... For anyone interested to hear me vent and share in solidarity about one of my own unfortunate experiences with this: After a surgery, I had complications that led to months of ever increasing pain, physical difficulties, and mental stress that was dismissed every time I brought it up. Usually followed by them baselessly blaming me for my own recovery issues (despite following every instruction they gave me to the T) and making me feel like I was just being paranoid and overly worried, even though there were very obvious complications from the surgery. When they finally almost took me seriously, they STILL pressured me to delay the corrective surgery I needed BECAUSE MY INSURANCE WASN'T ACTIVE YET because I'd started a new job and had to get through the probation period. And me feeling already like a an overbearing (and poor) patient, I conceded to waiting 3 more months...which led to further daily increasing pain and in the end, I lost an organ. After the corrective surgery failed, on my last follow up, I finally told them how neglected and disappointed I was in the results of my surgery and my treatment as a patient. I had been meaning to say it for so long, but I finally found the courage and literally brokedown and cried as I told them, all the while feeling GUILTY for having any criticism. They seemed shocked, and honestly I think my doctor felt hurt, but I keep having to remind myself, their hurt feelings can't compare to the medical harm I experienced. I had to have a future surgery with long recovery again to fix things (with a different surgeon, of course), and both the physical and emotional scars will always be with me. That's just one case, but I've had multiple other medical issues that were rife with being made to feel like an inconvenience and no one will ever believe any symptoms I told them I was experiencing unless I was visibly dying or severely physically injured. YES, there were some good doctors along the way, but the majority of the time, I've always felt like I should be ashamed to even bother bringing up any concerns or complaints I had with my body and healthcare...
As expensive as health care is that treatment sounds absolutely unacceptable and very dangerous. Good on you talking about this. So many women specially want to be nice and not an inconvenience, many need to hear that it's okay to advocate for themselves, their health and life is more important.
I don’t have the capacity to express in the way I want to, but I needed this. Thank you Jo. I still struggle with the idea of reaching out for help if I’m not 100% certain I am dying. But hopefully hearing these things will make change in my brain over time.
I think this can be said for every realm of life. People should be expected to do their job. There's a fine line between being a Karen and being a person who genuinely needs the business to do the job they're being paid for.
I had never heard the term, re: medical gaslighting. It so perfectly encapsulates everything wrong with those behaviors. As many have said, thank you for doing stuff like this, persevering and being awesome.
I love you for this Jo. The fear of being shrugged off seems so silly to people who don’t get it. I put off seeing doctors for years and my chronic condition has got so much worse because I’m too afraid to hear another doctor say “there’s nothing we can do” or “you’re just not sick enough” (which I literally heard a few months ago).
@@phillyphakename1255 It really is. I’ve described it as surviving but not thriving. Like I’m not dying but I can’t work, drive or live independently and doctors just don’t seem to care
@@libsybum3591 I feel that. I'm in the process of switching hospital systems, and both new doctors have been great. Antidepressant seems to be helping a bit with the life stuff, and new steroids are lightening the illness load while waiting for approval/funding for a biologic. Good doctors are out there, but can be really freaking hard to find. Took me 6 years for this one specialist. You are worth fighting for, keep at it.
Totally felt. We have to be our own advocates in healthcare these days. After a concussion with a preexisting brain condition (where there's already not a lot of room up there), I sought for answers to my continued dizziness and fatigue. Turns out, this early thirties year old, had a 99% blockage in her widow maker. ADVOCATE
I am someone with chronic health issues and disabilities. My cancer spread because of medical gaslighting… medical staff whether it be nurses, doctors etc, really NEED to THINK about what comes out of their mouths.
Thank you so much for bringing up the topic of medical gaslighting. I think it is something that everyone, but especially women experience and it needs to be discussed more. I recently got diagnosed with stage 3 Deep Infiltrating Endometriosis after about ten years of constantly being dismissed and my severe symptoms being ignored or being told that it is what it is. Ten years for an endometriosis diagnosis is the AVERAGE for people mostly due to medical gaslighting. So thank you again for sharing your experience and opening up the conversation.
As someone who works in the ER (registration) yes there are people who come to the ER who don’t need to be there. HOWEVER I would never make them feel that way. Yes advocate for yourself! Also go to the follow up appointments!
Ugh, sorry you've had to deal with all that bullshit, especially on top of all the actual medical issues that are hard enough. Really appreciate you doing this video and advocating for people getting the care they need!
You are spot on - happens in the UK too - one needs an advocate as a back up - problem was with Covid when there was no visiting allowed - my wife died in hospital of sepsis because of negligence, and no one being there to advocate for her, because visitors were not allowed at the time because of Covid. The hospital has since admitted their mistake - but that doesn’t bring my wife back!
I have experienced medical gaslighting where I was made to suffer in the misery of EXTREME PAIN. Professionals told me I was STUPID for wanting to amputate my left leg due to the HELL that CRPS is. I am so sorry you have had horrible experiences. I wanna hug you so much! You have helped me make peace with my medical expenses and amputation!
Hi Jo, as always your strength in fighting adversity can be seen in each of your videos, like your simplicity in explaining all your events, I don't know in America but even here in Italy the bizarre medical experiences, in addition to the amputation of the leg I went to various clinics because of my autism, thank you for sharing these experiences of yours, when I was in hospital and waiting for the amputation you were a godsend, you gave me strength and courage, you are a very strong and unstoppable woman!
I am glad you are doing so much better, and that you took the time to put this out. It's true, there are so many variables involved in an ER triage, but biases of different kinds, be they gender, race, insurer, the list is so long. Everything you said here is important for people to understand. It is your LIFE, and it is rare to get more than one go at it, so demanding that consideration is important, regardless of what they may think. They being triage staff, acquaintances, observers, officials, anyone who is not looking out for the best interests of anyone in medical distress. Stay safe, and keep healing.
As a nursing student, it breaks my heart that you were treated like that. It definitely reminds me to advocate for my patients and their needs. Sending lots of love ❤
Thank you Jo. Very important message and I am sure someone out there will benefit from your efforts today. On a totally superficial level, I don’t think you’ve ever looked more beautiful.
I have watched many of your videos now, and not only are you a beautiful woman in my opinion, you are stronger in character that a majority of.people ypu would consider "whole". Keep up the amazing work and stay.strong girl!!
Hello, been watching your videos since my motorcycle accident in August. I became a RAKA very violently and it was scary and reassuring to watch your videos while bed ridden. Your resilience is truly inspiring to me. Helping me understand that I can also overcome a lot. As well as realize that I’m not alone. Thanks for your videos and hopefully you enjoyed your “upslope” snow day like we did up here in Denver. 😊
What you are saying makes absolute sense- thank you for reminding us, especially us women, to advocate for ourselves and not accept medical gaslighting (and don't even start me on giving birth in a hospital).
This is an important video and as a professional patient (chronically ill person with a bingo card of diagnoses) I'm so glad that you put it out. (Also side note you chose an amazing hoodie to wear that goes with doodling and coloring. 😊) Edit: tlTo answer your question, yes I enjoyed this "chatty" video format and I will also enjoy any format you would like to use. ❤
I totally understand how you feel and what you mean. That is one of the biggest problems we have is not only doctors, but society as a whole treats those with disabilities like they are a burden. Like anything extra they have to do to make things accessible is not worth the trouble and they would prefer to just leave those people out. That's why we need to increase Accessibility Awareness. You are doing an awesome job at making people aware, and I thank you for that. I am hoping I can help with that soon as well. I've had many situation with doctors like you are talking about. When I had my right knee replaced they left me for 24 hours without pain meds because they said the nerve block would take care of it. Problem is the nerve block didn't work. So for 24 hours I cried and wished I was dead with how bad it hurt. To top it off the nurses and staff treated me like I was lower than dirt because I was overweight. Turns out they were bad all around because they put the implant in crooked that has caused me a lifetime of problems. Another situation I have ran into is I have gone to at least 10 different doctors to see about getting this bad implant fixed. They all turned me down. 5 out of the 10 said straight to my face that "they wouldn't even touch me because I was fat and if something happened to me after they worked on me it would ruin their reputation". They care more for their reputation than their patience. I tried to explain over and over that its very hard to loose weight if it hurts too much to move. I just hope and pray things get better for all of us. Not likely but we can hope.
Jo, I think you are my medical soul mate. Everything you say resonates so deeply with me. I've suffered from severe chronic pain among other things for 35 years. Having an "invisible" severe medical condition has put me in a position to experience most of the things you talk about. I'm so grateful you are out there sharing these nuggets of wisdom with everyone. You are making a difference in peoples lives. Thank you for that.
Wow! Thank you so much for sharing this. As a NP, I am so sorry you had to go through all of this; shameful! Reminds me to always strive to do better, to listen fully and approach everyone with compassion and open mind. Thank you!
I'm glad you're doing better finally in the different areas you're doing better in. But be encouraged if you only had one place messed up you'd be rockin' at least 50% better in just the one.
I thought it was awesome that the box of LIFE was present over your shoulder. So glad to see on the channel posting content again. You are truly a spiritual light.
I’m glad you’re getting medical professionals in your friend base now; I have been blessed to have nurses and doctors in my life since a young age who have helped coach me through various scenarios over the years. They taught me the lesson you’re enforcing here - you are NEVER an inconvenience regardless what people tell you. Even if a person were an addict or did have mental issues, there is STILL an underlying problem that needs attention and will only be addressed when someone decides to take action. To anyone listening, write everything down. Every symptom, every medicine you have taken, why, and its effect. Document EVERYTHING at every opportunity and never stop advocating for your care because you are WORTHY and DESERVING of care.
This is so relatable unfortunately. I had almost the same experience you had with your kidneys with a cyst. Medical schools need to tell these stories and educate providers. Thank you so much for sharing ❤
I so felt you on not wanting to inconvenience people who are doing their job. That is something I need to work on as well. Thank you for sharing your story Jo.
I'm so glad that you are ok! Been watching your videos for a long time. I've had some really crappy experiences with doctors too. I had a specialist after I broke my back telling me I was faking, and he couldn't approve any more worker's comp-what he didn't realize was I was self employed, and had a very high deductible, so I was actually paying cash to see him...bleh. It's cool that you are talking about this subject. It's something that everyone that has ever had it happen (the medical gaslighting) needs to know that they aren't alone. Again, I am SO happy that you doing so well!
Medical gaslighting is real. I’ve had stomach problems for two months and had to push to have some labs done. They didn’t find anything and I am better, but the lack of interest of trying to figure out what was wrong really peeved me! Not looking forward to going back for any more help with other issues! And trying to get pain relief is a joke. I have arthritis and taking OTC meds does not cut it! I am so sorry you have had to deal with so much for such serious issues!! You deserve so much better. ❤
Thank you so much for talking about your experiences! Your videos are one of the main reasons I made sure I got into a specialist rather than just accepting pain meds (not even prescription ones) and not actually figuring out the problem
Well said, and I love the format. In May, I thought I was having a diabetic low and was near passing out so I called for the ambos to come. They arrived and before they really got started checking me out, my heart stopped. Most people don't survive that, because no one is there to save them. I got very lucky. As you said, DON'T WAIT. Love you, Jo.
THANK YOU from the bottom of my heart! I am in therapy because of the way 2 ER doctors treated me when I was seeking treatment for a kidney stone. I am a 12 year clean recovering addict from opioid and it was the first thing before vitals please don't give me narcotics. The 1st in his dictation stated I was under the influence doctor 2 3 days later dictated. Drug seeking. I ended up passing the 4 mm stone 2 weeks later. I'd rather die than seek emergency medical care and am working through this. I'm sorry you went through this. We obviously found the gap in medical care. Now we need to create change
Have you seen Taking care of Maya? Or look up the Maya Kowalski case, she got a $200 million judgement after what happened to her in the hospital. I have had similar experiences. There was even a lawyer in Michigan that it happened too and the local news did a story about the hospital.
Im so sorry for you. I’ve gone through a LOT of the same bad treatment (and even got PTSD due to a coupe of Dr.s!) and are fighting against it in my country. Glad to see that you’re doing the same in your country ❤ your strong!
Thank you. I needed to hear this as a 26 year old that has recently been diagnosed with 4 chronic illnesses after fighting for answers for over a year.
Interesting to realize all the things that must be going on in your head to make a point like this. So many variants in the way you COULD have said this. So it makes sense to ground your over-eager-beaver brain with drawing. I couldn't explain it. But I completely relate. My best creativity seems to happen when I'm supposed to be doing something else.
I'm thankful to say that a few years ago an ER doctor told me that it was better to come in to the hospital regardless of whether I was sure something was wrong or not.
I LOVED this hanging out to chat format!!! It's always my favorite of yours. It was great to see you, and it's great to hear you SOUND like yourself. Good job deciding that you're WORTH it. That is HARD.
First, it's great to see you here! This was my first video of the day so I count that as a good omen. You've made an excellent point I think. Having had an extensive medical journey myself, it took me a while to learn to 'stand up for myself'. Some doctors I've seen don't even take the time to scan my chart before making snap judgements about what's going on. I've gotten better about asking clarifying questions too. I'm very fortunate to have found a regular doctor who is an excellent listener and is willing to listen to me saying what I think is going on. My wife has had many negative experiences before finding hers as well. Being a self-advocate is so important when it comes to many things, but especially with medical care. Thank you for your advocacy! Take care!! (I do like this format too.)
Yes I totally agree about the medical gas lighting..Similar has happened to me & now I do struggle going to Hospital if I need to which I then beat myself up about xx
This format is awesome, please show us what you doodled next time! I had a DR refuse to help me with a 3 degree. His report to my doctor was that I was drug seeking. My DR saw that snorted and wrote me a script for the maximum amount of codeine with 12 refills (also the maximum amount allowed). I filled it once and was still on that bottle when the script expired. I have also been told I absolutely could not have cortisone because I was diabetic. After I got rid of that DR the next sent me to a pain DR. The first thing the pain DR ordered for me was cortisone injections. It is hard always having to advocate for myself.
Happens to men too...if not worse (mentally) as men are meant to be, well, men. Where Drs are concerned though, women are neurotic and men are seen as weak/wimps if they go see them. This has to change as you say. You are a huge influence and burst of positivity on people, not just with physical problems, but mental health ones too. Thank you.
i don't think either is "worse", but for women it is almost universal. it's awful for men too though, don't get me wrong. i'm a man, and i have had pretty much no helpful medical experiences aside from my new gp (thank god for her). but anyone who isn't, like, a man who perfectly matches the textbook's example will have some sort of messed up medical experience. and in pretty much every western-type medical practice too, not just america. it goes deep.
As a healthcare professional, and a woman, I can say it’s not an “inconvenience” when it’s their JOB.
If they treat you that way, they are WRONG. THE END.
But once you are mistreated by more than one doctor, you lose trust and are told you are the problem 💔
@@emilywarren3053
Agree, completely. That’s why I say it as often and as loudly as I can: They are WRONG. THE END.
I know I am just one small voice screaming into the void, but my voice is all I have - and I won’t stop using it.
The "its ok to inconvenience people" is exactly what I needed to hear. I've been having flares non stop and I'm a college freshman trying to change dorms to a quieter location. Long story short everyone ive been paired with are partyers and wouldn't respect my needs i was about to settle to not be a burden on others but I'm going to go back to advocating for myself. Thanks for always saying what I need to hear!
Good for you. Ask for a medical single room, do you don't have to worry about roommates.
@karenennis6109 Sadly because I have seizures and migraines and do not use a mobility aid they are hesitant to give me those accommodations. Thank you for the suggestion!
@lvineyard3738 My bonus daughter has seizures as well, couldn't leave her in a room by herself, they did take that in mind when they.placed her in an upper level dorm, more apt to be quieter, even as a freshman. Accessibility services should help you out. You don't need a medical device to get help. Good luck
@@karenennis6109 I'll be sure to phrase it as a quiet dorm. Thanks!
It would be nice if they could offer disabled students cohousing options with other disabled students (maybe in a dorm with ADA compliance and accommodations) so they can be around people who at least understand their needs, and you could look out for each other. And they need to recognize that people with disabilities don't all look the same or have the same needs. Sounds like you could use a disability advocacy group or student alliance. Does your school have one?
I have the captions on and I literally screenshotted “it’s okay to inconvenience people who are doing their jobs”. I really needed to hear that right now
Cosigned! They're getting paid to do their jobs, and one hopes that they do the job because they want to help people. It's okay to ask for help.
Chronic illness: constantly asking yourself if this new symptom is from issues you already have, or from something new. I'm glad we have this community, to share stories and support. ❤❤
This is so real. I’m so grateful to the PCP I called last year and said, “I can’t explain how, but I’m having this fatigue and brain fog that I can tell is different from the Long Covid ones.” And she did not question me, made an appointment right away, and ran as many blood tests as she could think of. Now, we’re pretty sure I have lupus, and if I do, we caught it really early because my doctor took me seriously. I wish everyone in the world could have doctors like that. I’ve had too many in my life who were nowhere near as supportive, and I’m so grateful she was.
The time a neurologist said my seizures were all in my head, hence not worth his time. He prescribed me pills he didn’t tell me were habit forming, with no refills and nasty withdrawal symptoms, and never returned my calls or therapist’s calls.
May an umbrella open in his belly.
May he step on legos, have a strange rock inside his shoes, or in the soles of his shoes that can never be removed, and constantly step in wet puddles while wearing his favorite socks.
I was having spells that I was having a hard time verbalizing. The odd part was that it happened exactly one day a month, usually on the same day of the month as the previous month. For that day, it might happen a dozen times, then the next, nothing. A month later it would start up again. BTW, I'm a guy, so it's not so "obvious". Doctors thought it all in my head (NPI). My cardiologist couldn't find anything that would cause this (my heart has had plumbing replaced and significant modifications to its electrical system).
They were taking it less and less seriously. That is, until one of these spells turned into a full-on grand mal seizure (five minutes later and I'd been driving my wife, DIL, and granddaughter). That got some attention. In my case, the drugs have worked wonders. Though the first drug was a classic "can cause depression and thoughts of suicide", right out of the TV commercials.
Snowing?! Are you Mrs. Claus?
Funny a neurologist would say it's all in your head! Well friggin duh, that's why I'm here, Dr.
Yeah the last time I saw a neurologist she told me that I had to change my entire lifestyle because I was lazy (not in so many words but it was insinuated). I actually have a debilitating chronic health issue. She also prescribed me pills, but in my case they messed up my brain. I reverted back to sucking my thumb (something I hadn't done since I was a child) and now I twitch before going to bed. Kind of like mini seizures. I have no control of my twitching. It's really frustrating to know if she had listened to me I wouldn't be dealing with these issues now.
@@raeraebadfingers Like the neurologist told my mom after a brain scan. "We didn't find anything". She cracked up. He had no idea what was so funny.
Having worked in the medical field, I have seen people become very desensitized and in some cases, highly negligent. If you’re going to go to the hospital, you have to remember that the people there are not your friends, they are also not there for you to do them favors, and that a little bit of advocacy can save your life or the life of a friend or family member. You have to advocate for yourself and understand how the law applies and how it protects you as the patient. Sometimes people working in healthcare need an attitude adjustment, because they can end up costing a Hospital millions of dollars in settlements, not including the reputation damage that comes with one or many individuals screwing up and killing a patient because, hey, they were just having a very long and miserable day.
Yep. I've met so many medical "professionals" who just don't care anymore. I've been left in the waiting room passing out every 5 minutes while more urgent cases like "stubbed toe" and "dry skin" went before me. I've been diagnosed with "drama" that I later had surgically removed. I've been promised one med and had the doc send the nurse in with a med I'm allergic to instead, only for the nurse to try to get my partner kicked out "for assault" when she stopped the nurse by blocking my line (yeah, apparently refusing to open your hand when someone else tries to pry it open is assault). I've been told I don't have conditions I'm literally diagnosed with. I've been told a common side effect was my imagination. I've had my trauma thrown in my face. I've been yelled at to stop being scared. I've been threatened with a psych hold for crying while in pain. And the hospital never cares.
It sounds like the medical field there is too unhealthy for medical professionals to keep their mental health intact.
Thank you so much for this explanation, it explains perfectly why you waited so long to get the urgent medical care you needed and I fully understand it now. And yes, this video format is very nice, I'd love to see more of that!
(I still think the dojo was criminally negligent by not calling you an ambulance, though, but that's not within your sphere of influence.)
that last part is something i have trouble grasping, the inaction of the people in that room. was it lack of knowledge, the fear of burdening someone with medical bills? it's scary to think about. I'm really glad Jo eventually reached out to that UC doctor and followed his advice of going in.
TRUTH! My accident took my leg, my (productive) brain, my dignity, my patience, my friends, my trust in doctors, insurance, my life.. for all intensive purposes, I died that day. I was also born that day into the rest of my life and that often sucks too but not enough to keep me down. Keep up the brain work Jo. It's the opposite of easy and can take you down if you let it. It took away everything I loved, so I found new things to love. Stay awesome..
Yes the "drug seeking" ER nurse told me "next time just use yiur oxy it will work" ummm no im here for the pain cuz the oxy failed to work after an hour after taking it.. was given oxy for my tonsillectomy and then gaslit cuz i wanted something different "sorry cant give you anything stronger" not looking for stronger than oxy just different... After 3 days was given Dilaudid for the pain
I rolled my ankle stepping off of a curb in June of 2023. My doctor kept dismissing my pain every time I saw him, telling me it could take a year for it to fully heal even though it ached and throbbed no matter how much I rested.
After 10 months of being in pain, I finally changed providers and saw an amazing NP who immediately ordered imaging and referred me to a podiatrist. I had x-rays and an MRI, got a cortisone shot that unfortunately didn't last long, and had an arthroscopic procedure done a month ago. I'm already in less pain than I was before surgery and can't believe how long it took to get here from such a seemingly simple injury.
I only wish I had advocated for myself sooner!
I have a friend who has had so many infections, she has built a tolerance to several of the most common antibiotics so she has to ask for the stronger (more expensive) types. I've lost count of the number of times doctors have forced her to "just try" the cheaper stuff and she's ended up in hospital less than a week later. I hate it so much and wish patients would be listened to more
Helpful hint, when the patient can get a job as a medication somolier, they might just know what they are talking about!
That's... odd. Bacteria develop resistance to antibiotics, not patients. People can develop tolerance to drugs that affect their neurotransmitters or stop responding to biologic agents, but antibiotics work by attacking the bacteria inside the patient, not the patient themselves. If your friend is fully clearing her infection when she is treated, it shouldn't affect the next infection (unless she happens to coincidentally get infected with several drug-resistant bugs in a row).
Not saying your friend is wrong. Maybe she metabolizes common antibiotics differently from most people. Maybe there's some kind of underlying immunological cause to both the frequent infections and lack of response to antibiotics. It's worth investigating further, because that's very unusual.
sometimes what the Dr. can prescribe is an insurance issue.
If she’s tried this already ignore me. But it might help to print out a two-page, straightforward timeline of had this infection -> tried this antibiotic -> ended up in hospital-> given this stronger antibiotic-> infection resolved. And just hand that to the doctor while advocating. It should help if they either don’t believe her or if they have to make the case to the hospital or insurance to allow the stronger stuff.
Oof, needed this. Disabled young woman (hit fully at 22) and I've also had doctor's tell me to my face "That's not a thing." "I'VE never heard of anyone having that experience." All with the stereotypical look over &/or eye roll. Even tho, one of those "never happened before" crippled me in literally 2 weeks. Speaking of, if you have EDS and are scheduled for surgery, ESPECIALLY if you're on birth control, make sure your doctor knows!! I got a blood clot after surgery (possibly due to family medical history) and the blood thinner wreaked absolute havoc on my body. It made me bedridden for over a year and two years later I still haven't fully recovered. I'm still waiting to see what type of EDS I have so I can give more accurate/specific information but that's what I've got for now. Stay safe out here y'all, you deserve to be on your team❤
Needed that. Okay, the medical system in Canada is different, but the bullsh*t is still there. But, I ALSO have been TOLD by 9-1-1 and the EMTs, "Call us, that's what we are for." (parents falling, car accidents) And, "WHY DID YOU WAIT SO LONG?" (migraines that last a month, UTIs, shingles)
I'm not American. But I just had a wonderful experience today with a doctor. I thought I would share it. Cos I know situations like Jo's so good since 2022. And before too, only a little.
So...
I have an illness that is pretty much unknown to the world and there are almost no treatments. But a few symptoms can be treated. Somehow I still find myself stuck in helpless position. Cos all doctors turn away from me, don't want me to be their problem. And just lie to my face, while it's all a matter of googling the issue.
However!! I had so much stress and bad experiences with orthopedists in my city...I drove to one an hour away. And low and behold...he sat down with me yesterday...and listened to my story for a full 15 minutes. Kept asking me questions about my journey with that illness. Not only about the issues in my joints and what not, but my entire situation. Like not being able to sleep, not being able to lift more than 2kg, having constant issues forming full sentences etc etc etc.
And in the end, I didn't get the PT, that I was asking for. He said, he look into it. And he did! He called me back a couple hours ago and expressed how happy he was, that he learned something about this and now knows a bit more. And he asked ME for the specifics that I wanted to have on that PT prescription.
🥹🥲🥲🥲😭 I was so blown away. I was so happy...I was again sitting in a waiting room in a doctors office when his call came and I just told the doctor I was seeing... telling them how he listened to me and my doctor went: "Listened, a orthopedist?!" And made a face like: Respect! That's like a winning lottery ticket. 😅🫣 So you see...it really really was a super nice experience! I was so stunned.❤ Made my day! My month!
A few years ago i phoned a friend because i'd been having pain for a week and had started having breathing problems she had to pretty much tell me off and made me phone an ambulance. Even when the paramedics were putting me in the ambulance i was convinced i was wasting their time! The week before i had brought up some symptoms to my doctor he looked at me, looked at my records and said it was because of my diet. Turned out i had a gallbladder infection and had i left it much longer it could have been a hell of a lot worse. I've had so many doctors over the years treat me like crap because i am 1 a woman and 2 fat.
I've avoided doctors for years due to a fear of this combined with me being a jerk to myself and blaming any/all pain I feel on myself.
I'm so sorry that happened. Even if a condition might be a result of your weight and/or diet, it doesn't mean that you don't deserve proper medical treatment. A doctor should listen (especially if symptoms are new!) and order tests if necessary. Their job is to help you feel better, not to judge you.
Oh no, you had such luck that your friend told you to go. I know a guy who had gallbladder or was it kidney infection and he was gaslighted so one morning he was found dead. So sounds very similar, scary how often things like this happen. Important to not give up if you have health issues but it can't be easy when they call out people for eating too much it as drug seeking.
My first and only gallbladder attack, I had no clue what was happening. I was sure I was having a heart attack and dying. My husband and called 911. when the paramedics arrived I was lying on the tile floor of the entry way moaning - the cold floor was the only place that wanted to be. The paramedics kept asking how much i had been drinking. We kept saying none at all, but they didn't believe us. They begrudgingly transported me to The hospital and treated me like crap the whole ride in. Thank goodness the ER doctor's were better. I was in for emergency gall bladder removal in less than an hour. I was super sick - spent two weeks in hospital and had to have two more surgeries to fix everything. I never got an apology from the paramedics. If they had the final say, I would have died, I had a complete blockage and my liver and pancreas were shutting down.
The 2 hit of AFAB and fat is genuinely so rough, I feel you SO hard
as a cancer patient with brain metastases, her stories resonate deeply with me
Let me tell you my "is this a stroke" story. 61 year old male at the time in reasonably good condition. 35 years earlier I went through EMT training. Never worked in the field, but that was not the intent. One of the things I learned was there are some symptoms NOT to ignore. One of those is a stroke. So back to a few years ago and as I'm driving to work, I felt the right side of my face get a little numb, and maybe a little blurred vision in my right eye. A few minutes later I get into work and immediately look at the mirror and do the smile test. I really don't see anything wrong, but the numb is not going away. Deciding to call the paramedics was not an easy decision - no one wants to admit that you may be having a life altering event.
Medics show up and did a few quick tests and also don't really see any frank symptoms. However, they load me up and code-3 to the local stroke center. Within 10 minutes of being rolled in the door, I'm in a CAT scanner. Everyone was taking it very seriously. Turns out there was no indication of a stroke. An hour or so later I'm feeling fine. 26 hours, another CAT scan, and a MRI later, and still nothing. Neurologist said it might have been a baby TIA, but there was no real evidence to support that. However, everyone from the medics, ER Doc, nurses, to the neurologist all told me that I made the right call by not ignoring it. As you said, the time element with a stroke is critical.
In other words, listen to your body!
No! It's amazing to be a male! Men get taken seriously! Do you not see the difference, proven in actual medical studies, between women's treatment by doctors and men's?
I’m sorry that this happened to you! It must have been quite the scare!
In this case you had all the cards in your favor with being a man in his 60s, a demographic of people who have a lot of problems with strokes.
Sadly enough for us women it is a different story…
I had a TIA at 22 years old. I had clasical stroke symptoms and my primary care doctor (a woman) arranged for emergency transport by ambulance to a stroke center.
The first things I got asked in hospital was if I had anxiety and if was on my period or might be pregnant.
As my symptoms got a bit lighter they only gave IV fluids as it must be a migraine (without the symptoms of a migraine) and wanted to send me home without a CT scan.
My dad was quite the hero and he had made some video and photo’s of what was happening to me earlier (right sided face paralyses, slurred speach, difficulty using the right side of my body)
He was so angry on how I got treated and what got asked. After that he showed everything to the doctor and asked for a scan…
The medical world is quite different when you are a young woman… and medical gaslighting is something that happens daily and can cost lives.
Neuro RN here. Absolutely you did the right thing! Time is of the essence. FAST
Glad to hear that you most likely had a TIA.
A few years back, I was at an event away from home (only like an hour away, but still not at home), and I got up and was feeling a bit off-balance, listing a touch to the right, but it was slight enough that it only seemed relevant in hindsight. I was doing a volunteer position that required a lot of typing on a laptop, and I noticed that my right arm was feeling a little weak and I was having an increasingly difficult time holding it up level with my left, and that's when I called my husband to fetch me and take me to the doctor.
The medical staff pretty much got me admitted more or less immediately and on meds for my far-too-high blood pressure. The CAT was inconclusive and they said it probably wasn't a stroke. The MRI, however, told a different story, and it they ended up keeping me overnight for observation. I got off quite fortunate, as it started while I was still asleep.
Meanwhile, my husband had a brain bleed with _actual hallucinations_ and didn't even tell me what was going on, with me taking him to the ER _the next day_ when he finally started to communicate that he was having an issue due to the fact that he'd stopped being able to read. 😲 He stayed for a week, but the doctors were unable to determine what had caused it, only that he wasn't in any continuing danger. He, too, was incredibly fortunate. He's lost a small bit of his memory and has minor bouts of aphasia (mostly being unable to recall words or sometimes mixing them up when speaking), but is otherwise largely fine. But if he'd said anything at the start, he likely wouldn't even have that.
When dealing with the medical "establishment" one needs an advocate. If it must be yourself, advocate loudly if necessary.
I am trying to tell myself over and over that its ok to take up space. Its ok to need things. Its ok to rely on others sometimes. Its ok to be an inconvenience. I have a lot of trauma in my life that has repeatedly given me the message that these things are not ok, and even though the trauma is over it takes a lot of work to undo that internalized message. But only I can make those changes within myself.
Those are big ones for me. I'll add that I am trying to get past the belief that I would die before 18. And 21, and 25.
No, you are going to live to 80 years old. You deserve to have as healthy of a body as you can, you deserve a career and education, you aren't going to waste it when an allergic reaction takes you out.
I got past the dying young thing, now I'm trying to convince myself that its okay to have goals, it's okay to have long term plans. I most likely will live long enough to see them through.
We all need things sometimes! Even when we need things that aren't compatible with what someone else needs (e.g. me and my friend are both having a panic attack right now and need someone to be calm to support us), nobody is wrong for that. We can figure out another solution (we each call someone else) and reconnect later. And we are both okay, it's okay to need things. If you would think it's okay for your friend to need things, then it's okay for you too!
Sometimes it helps me to think: if I set boundaries/state my needs, my friends see that it is possible, and that can encourage them to do it too. I am trying to build honest, authentic friendships. I can't do that if I lie about my needs!
But it's also just what you deserve. Your feelings are important and you deserve to take them seriously. ❤
Oh my God. I know that feeling of doctors laughing at you when you feel so bad. I thought I had a stroke awhile back it ended up being thunderclap headaches. They treated me like I was acting like a puss. I couldn't hear or see out of my left side. This video is SO IMPORTANT. F those doctors and nurses. They get paid enough to get mildly frustrated.
I know a bunch of us commented on your stroke video that you should have gone in immediately. Thank you for making this video! I'm sorry doctors have been such assholes, you and all of us deserve to be heard! Thank you for reminding us all that it's ok to "inconvenience" people! 💜
I really appreciate how you advocate for people to trust themselves, take care of themselves, listen to their bodies. It's a message we all need to hear more.
As a disabled person who was told my neurological problems were me being too sensitive.... Thank you so much for your insight.
Ironically, I think hospitals can be one of the worst places for discrimination. Especially if you have any kind of disability. Medical trauma is something that isn’t commonly talked about, so I think it’s a good thing that you’re talking about this.
Try seeking physical health care when you have mental illnesses... Oh, boy! The gaslighting is out of this world. I literally waited 1,5 WEEK when I had a BLOOD CLOT in my leg, because I knew they were gonna dismiss me and think I'm hysterical and crazy. Yeah, when I finally went in it was a blood clot, that could've traveled to my lungs and killed me any of these days I waited.
If we talk about the gaslighting in psychiatric care it's anything from being rude to meeting doctors who literally LOSE their LIECENCE after being convicted of PHYSICAL ABUSE. He had me on section when I was 16, he laughed at me, insulted me, said I got what I deserved, forbid me from having contact with my parents, and I was stuck there for 3 months (no outside walks) each three times I was in that year.
I looked at the definition of emotional abuse, and their treatment of me fit perfectly. I remember once I started crying because they were bullying me, and when I cried they said I could come talk to them if I was feeling bad. "But you're the ones who make me feel bad!" I said. My only friend was my diary which I wrote in constantly. Yeah, until they took it away. WORST year of my entire life. If I had to go through it once more I'd rather kill myself. I was in acute, severe anguish day and night for over 12 months. Then I got medications, THANK GOD, and I turned back to the living.
I'm literally in therapy now for my health care traumas. It feels SO WEIRD to ask the psychiatry for help when they are the ones that have damaged me so. It's like a battered woman going to her abuser for therapy. It's so sick. But my current therapist is really good. Even though I hate health care as a whole, there are some hidden gems that might actually help a bit.
Oh, did I mention they diagnosed me with borderline because I have so "unstable realtionships" with health care professionals? Turns out I have NO problems towards other people in my life, and had NO problems before seeking psychiatric care. I guess it's the ultimate gaslighting - we've traumatised you by horrible treatment, but instead of acknowledging that we call your crazy and find a new diagnosis for you. It's a fucking JOKE!!!
+++
That is so true. Especially if you are a frequent flyer with chronic illnesses. I was my wife’s advocate and sometimes not nicely
I think this is also a good reminder to medical providers to set aside any assumptions and listen to their patients
Medical gaslighting is real and it’s very nuanced. Your experience, or anyone else who has experienced it are valid.
I had a seizure and went to the ER afterwards because I didn’t know what the heck happened. I was dismissed by the doctor…I overheard him telling a nurse or another doctor that I was “having an episode” and that “he’s on an antipsychotic”-An antipsychotic that is comfortably controlling my Bipolar II disorder, and had been for years, thank you very much. I was discharged from the ER and was very pissed. I went to a non-emergency neurologist and yeah it turns out that I probably did have a seizure due to my medical history. F*** that ER doc! I’m not gonna go to the hospital if I don’t seriously think something is wrong, like wtf…
I’m so happy you got help in time. I work in the medical field as a registered dietitian and I can’t tell you how many of my patients are scared to go to doctors and or even scared of me because of negative experiences. It’s really sad.
I like this video format! It feels very cozy and comforting.
This video is just making me reflect on how much I rely on knowing as much as or more than my doctors about as many things as possible, which isn't actually feasible to maintain in perfect condition, much less in a situation with neurological damage. Much less for, yanno, most patients. It's a really rough sphere to self-advocate in.
Thanks for this.
I needed to hear this right now. I've had four weeks of non stop nonsense (we're five antibiotics, an antifungal, an allergic reaction or 3, probably kidney stones and so much more so far). My most recent trip to the ED I told them all to go f**k themselves after keeping me awake all night then showing up at 10am (had been awake for 26 hours straight) to tell me everything is fine, have some antibiotics we know won't work, be super dismissive of my concerns and be 'you have a urology appointment in January what's the problem?'. I don't normally lose it like that but I'd done exactly what I was told to do, I was exhausted and in pain and nauseous and hungry (it also wasn't directed at any one person, rather at the system more generally).
I do everything I can to remember that I'm not in the wrong for following advice, for listening to concerning symptoms. I can't possibly know that my blood tests are fine before they do them. I'm tracking BP/pulse/sats/temp at home and only go in when I need to.
I also have gotten more confident (and insistent) that access needs are met - including refusing to go back onto the ward until a solution was found that allowed me to have my wheelchair somewhere I can independently get into it, after them moving my chair meant that air freshener triggered an asthma attack I couldn't escape on a recent admission. But it's hard. Nearly 20+ years of near relentless gaslighting and nonsense gets to you in ways that are hard to predict.
This idea of being a burden or believing that you, the person in need, are somehow wrong bleeds over into plenty of other sectors, too. I’m a social worker, not in a clinical setting, I’ll never be working with someone in a life or death scenario, but, I have clients call me so often and open up with “I’m so sorry to bother you.”
Uhhh - you’re *sorry* for asking me to do my *job?* It’s always been frustrating for me when a client says something like that, doubly so because I need them to tell me what’s going on so I can advise them properly.
We really gotta shift this whole mindset - it’s such an engrained, cultural thing here in the US. You’re probably right about how it’s stemming from how we interact with healthcare - I’d never made that connection before, but, I think you’ve hit it.
I just got your Levitate ad while watching the video and I was so confused for a second :D
Me too!
I just love seeing your face and knowing you are holding on and living life to its best...
Now I must say I'm also fully supportive of you doing that 100% in private... but you're amazing, and we need all the amazing we can get...
Thank you so much for continuing to share. I lost my leg 2 yrs ago and suffer from PTSD from my life and time in the service. You continue to amaze me and help me look at what's going on in a different light. I hope and wish the best for you always! BC
I have been misdiagnosed so many times. Everything was mental health until it was PCOS and Endometriosis, and then it was a labral tear in my hip socket, adult onset daily migraines, and TMJ. There's more...and now the ER thinks I'm medication seeking. No, I'm legit injured.❤❤ love you, Jo, and your pajamas are so cool!
I went to the ER because I couldn't breathe and I felt like I was having a heart attack. The doctor treated me like I was delusional. Dug his fingers incredibly hard into my chest and then told me it couldn't be a heart attack because I said "ow" and they don't cause tenderness on the skin. He gave me an antacid and sent me on my way in tears. Turns out it was a full blown panic attack and they literally didn't consider that or care even if it was. Years later and I am terrified of ever having to go back.
Oof, I'm really sorry that happened. How absolutely insensitive :( I get panic attacks too and they do feel that intense, I wish they had been able to recognize what was going on or at least not be jerks about it!!
The thing is that even if you hadn’t waited and gone straight to the ER, there’s a good chance you would’ve been dismissed and still had to wait until the damage got visibly worse. So much of it is down to luck.
Your message still stands though, that our own fear of being put down yet again shouldn’t be a factor in diminishing our chances of getting help.
I really enjoyed this chatty format, Jo. As someone with chronic pain issues for the past 23 years, I now have an amazing primary care doctor who advocates for me with such goodwill and encouragement; I know that I am so blessed. He sends me to specialists (now they haven't always been as helpful as I would like, but some of the issues are about opioid meds which doctors, even pain management doctors, get tetchy about. Sigh. Some people *do* need these meds at higher doses than doctors are willing to provide. Frustrating. I'm looking at yet another surgery (likely spinal fusion) in the near future.
Your message about not being worried about inconveniencing people is one I need to take to heart. Thanks, Jo! You inspire me!! God bless you!!
I just got a new PCP at the beginning of the year and she is absolutely incredible! So incredible that my wife has switched over too. When we first met, she walked in the room, sat down, touched me on my knee, and spent the first five minutes asking me to tell her about myself. She didn't want to know about my problem, just tell her who I am. It was very touching. I've seen her several times since then and she has been super supportive. I never feel rushed. At this point I trust her completely and will do whatever she recommends. As I said to my wife just a few days ago, even if she were to make a mistake, I know that she has my best interest in mind. Having a great PCP is invaluable.
Annoyingly most of us who need painkillers try to limit the amount needed by themselves even without "professional cautioning/intervention", and medicating further down than "this makes it manageable" is extremely rare as we know there is always the chance for a flareup on top of whatever we're feeling which requires more pain meds.
I've dealt with medical gaslighting as well on multiple occasions, and it IS traumatizing. It scares people from seeking help, and causes so much more harm, the one thing they swear an oath to never do. It's important to talk about it and bring awareness and solidarity. Thank you for sharing your stories with us Jo! I'm so sorry you went through that...
For anyone interested to hear me vent and share in solidarity about one of my own unfortunate experiences with this:
After a surgery, I had complications that led to months of ever increasing pain, physical difficulties, and mental stress that was dismissed every time I brought it up. Usually followed by them baselessly blaming me for my own recovery issues (despite following every instruction they gave me to the T) and making me feel like I was just being paranoid and overly worried, even though there were very obvious complications from the surgery. When they finally almost took me seriously, they STILL pressured me to delay the corrective surgery I needed BECAUSE MY INSURANCE WASN'T ACTIVE YET because I'd started a new job and had to get through the probation period. And me feeling already like a an overbearing (and poor) patient, I conceded to waiting 3 more months...which led to further daily increasing pain and in the end, I lost an organ. After the corrective surgery failed, on my last follow up, I finally told them how neglected and disappointed I was in the results of my surgery and my treatment as a patient. I had been meaning to say it for so long, but I finally found the courage and literally brokedown and cried as I told them, all the while feeling GUILTY for having any criticism. They seemed shocked, and honestly I think my doctor felt hurt, but I keep having to remind myself, their hurt feelings can't compare to the medical harm I experienced. I had to have a future surgery with long recovery again to fix things (with a different surgeon, of course), and both the physical and emotional scars will always be with me.
That's just one case, but I've had multiple other medical issues that were rife with being made to feel like an inconvenience and no one will ever believe any symptoms I told them I was experiencing unless I was visibly dying or severely physically injured. YES, there were some good doctors along the way, but the majority of the time, I've always felt like I should be ashamed to even bother bringing up any concerns or complaints I had with my body and healthcare...
As expensive as health care is that treatment sounds absolutely unacceptable and very dangerous. Good on you talking about this. So many women specially want to be nice and not an inconvenience, many need to hear that it's okay to advocate for themselves, their health and life is more important.
I don’t have the capacity to express in the way I want to, but I needed this. Thank you Jo. I still struggle with the idea of reaching out for help if I’m not 100% certain I am dying. But hopefully hearing these things will make change in my brain over time.
I like the format. Just hanging in your kitchen with you and having a chat.
Thank you for this. As a 25 year old who has had "IBS" for the last four years, I needed to hear this.
I think this can be said for every realm of life. People should be expected to do their job. There's a fine line between being a Karen and being a person who genuinely needs the business to do the job they're being paid for.
💯💯💯
If it's about health or life it's okay to be a Karen but many definitely are scared to be seen as just a Karen.
It's the worst leaving the drs feeling more hopeless than when you went in. I'm glad you made this video, thank you.
I had never heard the term, re: medical gaslighting. It so perfectly encapsulates everything wrong with those behaviors. As many have said, thank you for doing stuff like this, persevering and being awesome.
I love you for this Jo. The fear of being shrugged off seems so silly to people who don’t get it. I put off seeing doctors for years and my chronic condition has got so much worse because I’m too afraid to hear another doctor say “there’s nothing we can do” or “you’re just not sick enough” (which I literally heard a few months ago).
Those chronic conditions where you /*can/* go without treatment are so tough for the brain.
@@phillyphakename1255 It really is. I’ve described it as surviving but not thriving. Like I’m not dying but I can’t work, drive or live independently and doctors just don’t seem to care
@@libsybum3591 I feel that. I'm in the process of switching hospital systems, and both new doctors have been great. Antidepressant seems to be helping a bit with the life stuff, and new steroids are lightening the illness load while waiting for approval/funding for a biologic.
Good doctors are out there, but can be really freaking hard to find. Took me 6 years for this one specialist. You are worth fighting for, keep at it.
Totally felt. We have to be our own advocates in healthcare these days. After a concussion with a preexisting brain condition (where there's already not a lot of room up there), I sought for answers to my continued dizziness and fatigue. Turns out, this early thirties year old, had a 99% blockage in her widow maker. ADVOCATE
Hugs ❤
Loving the animals, Ted Lassos, Plant life atmosphere. The watermic worked amazing lol! Thanks for sharing, Jo 😊
I am someone with chronic health issues and disabilities. My cancer spread because of medical gaslighting… medical staff whether it be nurses, doctors etc, really NEED to THINK about what comes out of their mouths.
Laid back and chatty is just what my chronic fatigue brain needs. Thanks ❤
Thank you so much for bringing up the topic of medical gaslighting. I think it is something that everyone, but especially women experience and it needs to be discussed more. I recently got diagnosed with stage 3 Deep Infiltrating Endometriosis after about ten years of constantly being dismissed and my severe symptoms being ignored or being told that it is what it is. Ten years for an endometriosis diagnosis is the AVERAGE for people mostly due to medical gaslighting. So thank you again for sharing your experience and opening up the conversation.
As someone who works in the ER (registration) yes there are people who come to the ER who don’t need to be there. HOWEVER I would never make them feel that way. Yes advocate for yourself! Also go to the follow up appointments!
I think this needs to be shown to medical and nursing students.
Like the format
Glad you're listening to your body better
Ugh, sorry you've had to deal with all that bullshit, especially on top of all the actual medical issues that are hard enough. Really appreciate you doing this video and advocating for people getting the care they need!
You are spot on - happens in the UK too - one needs an advocate as a back up - problem was with Covid when there was no visiting allowed - my wife died in hospital of sepsis because of negligence, and no one being there to advocate for her, because visitors were not allowed at the time because of Covid. The hospital has since admitted their mistake - but that doesn’t bring my wife back!
I have experienced medical gaslighting where I was made to suffer in the misery of EXTREME PAIN. Professionals told me I was STUPID for wanting to amputate my left leg due to the HELL that CRPS is. I am so sorry you have had horrible experiences. I wanna hug you so much! You have helped me make peace with my medical expenses and amputation!
Great video and very important message. Also, I liked seeing you doodle instead of seeing someone put on makeup while they talk to the camera!
I love the mic taped to the waterbottle. Use what you got!
Hi Jo, as always your strength in fighting adversity can be seen in each of your videos, like your simplicity in explaining all your events, I don't know in America but even here in Italy the bizarre medical experiences, in addition to the amputation of the leg I went to various clinics because of my autism, thank you for sharing these experiences of yours, when I was in hospital and waiting for the amputation you were a godsend, you gave me strength and courage, you are a very strong and unstoppable woman!
So glad to see you back again.
I am glad you are doing so much better, and that you took the time to put this out. It's true, there are so many variables involved in an ER triage, but biases of different kinds, be they gender, race, insurer, the list is so long. Everything you said here is important for people to understand. It is your LIFE, and it is rare to get more than one go at it, so demanding that consideration is important, regardless of what they may think. They being triage staff, acquaintances, observers, officials, anyone who is not looking out for the best interests of anyone in medical distress. Stay safe, and keep healing.
As a nursing student, it breaks my heart that you were treated like that. It definitely reminds me to advocate for my patients and their needs. Sending lots of love ❤
Thank you Jo. Very important message and I am sure someone out there will benefit from your efforts today. On a totally superficial level, I don’t think you’ve ever looked more beautiful.
I have watched many of your videos now, and not only are you a beautiful woman in my opinion, you are stronger in character that a majority of.people ypu would consider "whole". Keep up the amazing work and stay.strong girl!!
Hello, been watching your videos since my motorcycle accident in August. I became a RAKA very violently and it was scary and reassuring to watch your videos while bed ridden. Your resilience is truly inspiring to me. Helping me understand that I can also overcome a lot. As well as realize that I’m not alone. Thanks for your videos and hopefully you enjoyed your “upslope” snow day like we did up here in Denver. 😊
What you are saying makes absolute sense- thank you for reminding us, especially us women, to advocate for ourselves and not accept medical gaslighting (and don't even start me on giving birth in a hospital).
This is an important video and as a professional patient (chronically ill person with a bingo card of diagnoses) I'm so glad that you put it out.
(Also side note you chose an amazing hoodie to wear that goes with doodling and coloring. 😊)
Edit: tlTo answer your question, yes I enjoyed this "chatty" video format and I will also enjoy any format you would like to use. ❤
I totally understand how you feel and what you mean. That is one of the biggest problems we have is not only doctors, but society as a whole treats those with disabilities like they are a burden. Like anything extra they have to do to make things accessible is not worth the trouble and they would prefer to just leave those people out. That's why we need to increase Accessibility Awareness. You are doing an awesome job at making people aware, and I thank you for that. I am hoping I can help with that soon as well.
I've had many situation with doctors like you are talking about. When I had my right knee replaced they left me for 24 hours without pain meds because they said the nerve block would take care of it. Problem is the nerve block didn't work. So for 24 hours I cried and wished I was dead with how bad it hurt. To top it off the nurses and staff treated me like I was lower than dirt because I was overweight. Turns out they were bad all around because they put the implant in crooked that has caused me a lifetime of problems.
Another situation I have ran into is I have gone to at least 10 different doctors to see about getting this bad implant fixed. They all turned me down. 5 out of the 10 said straight to my face that "they wouldn't even touch me because I was fat and if something happened to me after they worked on me it would ruin their reputation". They care more for their reputation than their patience. I tried to explain over and over that its very hard to loose weight if it hurts too much to move.
I just hope and pray things get better for all of us. Not likely but we can hope.
Glad see back on UA-cam
Jo, I think you are my medical soul mate. Everything you say resonates so deeply with me. I've suffered from severe chronic pain among other things for 35 years. Having an "invisible" severe medical condition has put me in a position to experience most of the things you talk about. I'm so grateful you are out there sharing these nuggets of wisdom with everyone. You are making a difference in peoples lives. Thank you for that.
Wow! Thank you so much for sharing this. As a NP, I am so sorry you had to go through all of this; shameful! Reminds me to always strive to do better, to listen fully and approach everyone with compassion and open mind. Thank you!
Seeing your Levitate ad right before your video is surreal. Congrats!
I'm glad you're doing better finally in the different areas you're doing better in. But be encouraged if you only had one place messed up you'd be rockin' at least 50% better in just the one.
I thought it was awesome that the box of LIFE was present over your shoulder. So glad to see on the channel posting content again. You are truly a spiritual light.
I’m glad you’re getting medical professionals in your friend base now; I have been blessed to have nurses and doctors in my life since a young age who have helped coach me through various scenarios over the years. They taught me the lesson you’re enforcing here - you are NEVER an inconvenience regardless what people tell you. Even if a person were an addict or did have mental issues, there is STILL an underlying problem that needs attention and will only be addressed when someone decides to take action. To anyone listening, write everything down. Every symptom, every medicine you have taken, why, and its effect. Document EVERYTHING at every opportunity and never stop advocating for your care because you are WORTHY and DESERVING of care.
This is so relatable unfortunately. I had almost the same experience you had with your kidneys with a cyst. Medical schools need to tell these stories and educate providers. Thank you so much for sharing ❤
I so felt you on not wanting to inconvenience people who are doing their job. That is something I need to work on as well. Thank you for sharing your story Jo.
I'm so glad that you are ok! Been watching your videos for a long time. I've had some really crappy experiences with doctors too. I had a specialist after I broke my back telling me I was faking, and he couldn't approve any more worker's comp-what he didn't realize was I was self employed, and had a very high deductible, so I was actually paying cash to see him...bleh. It's cool that you are talking about this subject. It's something that everyone that has ever had it happen (the medical gaslighting) needs to know that they aren't alone. Again, I am SO happy that you doing so well!
Medical gaslighting is real. I’ve had stomach problems for two months and had to push to have some labs done. They didn’t find anything and I am better, but the lack of interest of trying to figure out what was wrong really peeved me! Not looking forward to going back for any more help with other issues! And trying to get pain relief is a joke. I have arthritis and taking OTC meds does not cut it! I am so sorry you have had to deal with so much for such serious issues!! You deserve so much better. ❤
Thank you so much for talking about your experiences! Your videos are one of the main reasons I made sure I got into a specialist rather than just accepting pain meds (not even prescription ones) and not actually figuring out the problem
You're my hero. Ive had heaps of medical bad times because drs are so often so unprofessional.
You give me hope 🙏
Well said, and I love the format. In May, I thought I was having a diabetic low and was near passing out so I called for the ambos to come. They arrived and before they really got started checking me out, my heart stopped. Most people don't survive that, because no one is there to save them. I got very lucky. As you said, DON'T WAIT. Love you, Jo.
Hi, Jo!!! Excited to watch this.
THANK YOU from the bottom of my heart! I am in therapy because of the way 2 ER doctors treated me when I was seeking treatment for a kidney stone. I am a 12 year clean recovering addict from opioid and it was the first thing before vitals please don't give me narcotics. The 1st in his dictation stated I was under the influence doctor 2 3 days later dictated. Drug seeking. I ended up passing the 4 mm stone 2 weeks later. I'd rather die than seek emergency medical care and am working through this. I'm sorry you went through this. We obviously found the gap in medical care. Now we need to create change
Have you seen Taking care of Maya? Or look up the Maya Kowalski case, she got a $200 million judgement after what happened to her in the hospital. I have had similar experiences. There was even a lawyer in Michigan that it happened too and the local news did a story about the hospital.
Im so sorry for you. I’ve gone through a LOT of the same bad treatment (and even got PTSD due to a coupe of Dr.s!) and are fighting against it in my country.
Glad to see that you’re doing the same in your country ❤ your strong!
Thank you. I needed to hear this as a 26 year old that has recently been diagnosed with 4 chronic illnesses after fighting for answers for over a year.
Interesting to realize all the things that must be going on in your head to make a point like this. So many variants in the way you COULD have said this. So it makes sense to ground your over-eager-beaver brain with drawing. I couldn't explain it. But I completely relate. My best creativity seems to happen when I'm supposed to be doing something else.
Sorry you have all these issues, you seem like such a nice person.
Thank you Thank you Thank you! for the reminder - we have to Inconvenience people if things are happening!
I'm thankful to say that a few years ago an ER doctor told me that it was better to come in to the hospital regardless of whether I was sure something was wrong or not.
I LOVED this hanging out to chat format!!! It's always my favorite of yours. It was great to see you, and it's great to hear you SOUND like yourself. Good job deciding that you're WORTH it. That is HARD.
I've been gaslit by many doctors over many years. It was especially bad in the '70s & '80s. Good advice! Glad you're doing well (enough).
First, it's great to see you here! This was my first video of the day so I count that as a good omen. You've made an excellent point I think. Having had an extensive medical journey myself, it took me a while to learn to 'stand up for myself'. Some doctors I've seen don't even take the time to scan my chart before making snap judgements about what's going on. I've gotten better about asking clarifying questions too. I'm very fortunate to have found a regular doctor who is an excellent listener and is willing to listen to me saying what I think is going on. My wife has had many negative experiences before finding hers as well. Being a self-advocate is so important when it comes to many things, but especially with medical care. Thank you for your advocacy! Take care!! (I do like this format too.)
Yes I totally agree about the medical gas lighting..Similar has happened to me & now I do struggle going to Hospital if I need to which I then beat myself up about xx
Thank you Jo. I'm so sorry for what you've gone through. Your words are powerful.
This format is awesome, please show us what you doodled next time!
I had a DR refuse to help me with a 3 degree. His report to my doctor was that I was drug seeking. My DR saw that snorted and wrote me a script for the maximum amount of codeine with 12 refills (also the maximum amount allowed). I filled it once and was still on that bottle when the script expired.
I have also been told I absolutely could not have cortisone because I was diabetic. After I got rid of that DR the next sent me to a pain DR. The first thing the pain DR ordered for me was cortisone injections. It is hard always having to advocate for myself.
Thank you so much. I watch you everyday now. And you are helping me through this ordeal.
Happens to men too...if not worse (mentally) as men are meant to be, well, men. Where Drs are concerned though, women are neurotic and men are seen as weak/wimps if they go see them. This has to change as you say. You are a huge influence and burst of positivity on people, not just with physical problems, but mental health ones too. Thank you.
i don't think either is "worse", but for women it is almost universal. it's awful for men too though, don't get me wrong. i'm a man, and i have had pretty much no helpful medical experiences aside from my new gp (thank god for her). but anyone who isn't, like, a man who perfectly matches the textbook's example will have some sort of messed up medical experience. and in pretty much every western-type medical practice too, not just america. it goes deep.