That’s an issue I have explaining my illnesses to people. Like do you realize I’m only 28 and I still have a lot of aging to do? We are waiting for arthritis and other regular old people stuff. What if I need my gallbladder out or something later? Will opioids help my chronic pain and then I’m an addict? People care more about the number of years you have. “You’re too young to use a cane!” “Too young to be taking it easy!” Well I’m trying to pace to make sure I don’t make my life worse for myself later, Karen.
@@supernova622 Oh yea, don’t we love like older or elderly people who want to tell everyone under 60 they are basically still a child and shouldn’t have any issues. 🤦🏼♀️ Ethel, please.
@@supernova622I've been battling chronic depression since I was 4, someone pls tell myself from ages 4-28(now) that I was actually too young for it the whole time 🤷🏼🤣
Too young to take it easy?? Forget chronic illness, this attitude is why so many young people are totally burnt out or falling for scams that promise to give you energy etc (when what they actually need is sleep and a balanced amount of leisure). It's even more important for chronic illness sufferers...
PLEASE never underestimate the value of these rest day videos. To know that there is someone out there that knows what your experience is like is invaluable.
this!! it also means that they have to then actively choose to be empathetic and understanding, which so many of them don't want to do because it's "so exhausting" (likely related to motivators tied to their vulnerability like you mentioned)
@@lisam5744 i'm so sorry someone treated you that way. no one deserves that 💜 i very recently had to remove someone from my life- because instead of just being honest and saying what that person said to you, this "friend" attacked my character and told me how awful of a person i am for not being able to do as much as she could. so many people lack empathy for a cause that isn't fully their own and it's extremely disheartening.
My last therapist told me something that really stuck with me. Now, I don’t remember the words exactly but she essentially told me that if it doesn’t seem like it’s gonna get better, the best thing you can do is just learn how to make living with it easier; Don’t fight it, work with it. And that’s helped- so much.
There’s always a tendency to be told that our problems can be fixed, or will resolve, but they often won’t, be it fatigue, depression, anxiety, or other issues. But we can, with help, learn to live with things and live semi-functional lives. There needs to be better, more realistic education, and understanding of our limits.
Yep, I’ve been in and out of therapy since I was like 7. My mental health problems are here to stay. I haven’t “given up”, I’ve simply accepted it’s something I need to learn to live with instead of fix. And I assume it’s the same with physically health issues as well.
I agree - we tend to see our future selves as thin, or not in pain, or not struggling stilll...yet it never happens despite all the hard work. Even dooing things I love - that feeling of being punished for wanting a day out. 3 days in bed for 1 day out. But you do it because happy memories are better than no happy memories. Yeah - we need to accept oour limits!
It doesn't get cured type better but we learn to navigate our day to day lives better so it doesn't stay the same level of awful. There are ups and downs just like everyone has, they're just different things to feel good or bad about. I touched my toes yesterday and proudly told my husband. He didn't get it. I explained "I've just touched my toes for the first time in my life". Then he got it and celebrated with me. What's completely normal for one person is a big deal to someone else.
Yes, it's something I have become very frustrated with in a lot of therapy and self help these days, it so often swings on claiming that there is always a way we can effect our circumstances and we just need to learn the tools and motivation to stop being too pessimistic and apathetic to see how to do so. So many people buy into this thinking now that there is often absolutely no empathy for people who are genuinely in a difficult position for whatever reason. People need to learn that empowering someone and helping them develop tools to improve their life as much as possible may just mean learning the best ways to manage still very crappy situations sometimes, and is definitely not the same as saying 'pull yourself together, if you are struggling then it's probably your own fault and you just need to pull yourself up by your boot straps and fix it'
@@spaghetto9836 The video even mentions it as a text on the screen. It's no too many years since she was diagnosed with that, thanks to followers telling her to get checked.
I also have ADHD and take medication for it, and fun fact - it also helps other parts of my life. It has an antidepressive effect on me (I'm bipolar), and hightens my blood pressure so I'm not so dizzy and lethargic all the time. And of course it gives me more energy and focus, so it's really a great medication that does multiple things! Just like for Jessica.
My Granddad is 84 and I'm 18, and yet in many ways we have similar ability levels. He's generally very sympathetic, he thinks about how well he was when he was my age, and says it's not fair that I'm so young and already have to deal with all these things he has to deal with now. He says I should be going out with friends at my age, not stuck at home with my Mum looking after me. Honestly I think he's right, but you know, I make the best of it.
I've had ME/CFS since I was 12 years old, and I am now 22. Less than a year ago, my ME went from moderate to severe, and I am now completely bedbound. In the past 3 years, I have developed so many new chronic conditions, including RA, POTS, EDS, migraines, etc. It's been hard, and my life has changed drastically several times. Despite all this, I'm the happiest I've ever been. I have an amazing support system, a great therapist, and am surrounded by people who truly care about me for the first time in my life. I've lived in fear of my condition getting worse for so much of my life, and now that it has, there's almost a kind of peace that comes from knowing that the worst has happened and it turned out okay. I'm determined to make my life one worth living, and I am very fortunate to have people around me who wish to do the same. I still have a lot of grieving to do, been kind of running away from that with toxic positivity, but I know I'll get there. Thank you as always for sharing your stories and feelings with us ❤
Oh yes, running away from grieving, very relatable😂😂 *NG channel announcer voice* *Голосом Дроздова* In the above you can witness a typical exemplum of running away
@somethingsmatter There's definitely been some of that on my end too. My early life was full of injustice, so I was a little numb to it at that point. I have since been working on going back and fully processing everything. Sometimes bad things happen for no reason. It's not fair, and we don't deserve it. It's important to acknowledge that. I try to use that feeling of injustice as motivation. The world has tried to kill my happiness, and I'm determined not to let it. I didn't choose to play life on hard mode, but I'm going to find my own win condition.
I think "people" are talking about it. The problem is that the vast majority of people aren't going to talk about things they don't understand nor will they discuss topics (usefully) where they are ill-informed, or unaware. There are also a lot of people who float through life with their head in the sand unless something hits them hard enough for them to stop being a zombie. I know a few people like that. Weirdly lucky, and honestly nice people but very very oblivious. Sometimes it seems like "everyone" knows something but really we're just very much invested in our bubbles.
It took 20 years for the US government to recognize the damage done by Agent Orange in Vietnam in the veterans. It took less time for them to recognize the damage done to soldiers who were exposed to chemical warfare in Desert Storm. It was about 10 years. The conservatives screamed and hollered the whole way though and were constantly trying to cut funds to Veterans hospitals.
When everyone was stuck at home for COVID, I was kind of hopeful that people would be more understanding about how living life at your house is pretty rough. But I think they've forgotten.
It really is rough. I've been doing it for maybe 5 years now and it's starting to feel unsustainable. I don't think I can keep going like this. I'm not sure what to do. Any tips? Dw if not
I feel you! People always saying ‘I hope you’re better’ or ‘are you better yet?’, ‘you don’t look ill though’ 🙃 sometimes it’s sitting with the unknown, the uncomfortable and the darkness. Thanks for your vulnerability Jessi ❤
It's tough, it feels like no matter how many times we remind our friends that this is chronic they just forget about our illness until we mention it again, and they always respond to it as if it's new and temporary and some hardship to overcome. We'll just casually mention chronic pain, not even be in a bad pain day, and it's a million hug emojis and "I'm so sorry" and "sending good vibes" and "hope it gets better" like no, it won't, we've told you time and time again this is just our life, disability is value neutral, please *we use we because of our plural identity, not trying to speak for everyone who's disabled or anything
I have switched to, largely, “May all go smoothly,” cause I feel like across illnesses and injury, aspects of all interactions related to that can go more or less smoothly, like dealing with the bureaucracy of healthcare and benefits or managing the other junk. Sometimes when stars align that smooth thing may be recovery, but it may not.
I try to take comments like that not as "you're better so you're cured and not struggling" but rather as "not having your worst day". Ie they're celebrating that you're managing better and having an OK day rather than a bad one. Ie better as an improvement not as an absolute
@@nicolabannister3582 Ditto. I totally understand the frusttration w/ hearing that from loved ones, too, but imo assuming good faith & like re-translating it is helpful to actually understand what they're trying to do, which is be supportive.
As a disabled and chronically-ill married lesbian, who is not handling it very well at 30, this video felt very comforting. Thank you so much. Watching your videos lately has been inspiring to make changes to what I'm going through, or at least trying. Thank you. I hope yall have a prosperous year ❤
I have family that constantly ask when I’ll “get better” and “what’s the point of going to the doctor if you aren’t getting better?” I have friends who are also disabled and their families ask the same questions. Its exhausting that in 2024 ppl still don’t understand what “chronic illness” is. It helps to talk to ppl in our community though and confirm mentally that we ARE trying and we ARE thriving to the best of our ability ❤
Jessica’s stream of consciousness, from bed videos, are always so powerful. Thanks Jessica for showing this side of your life. It is so important to show people that they are not alone.
It’s so helpful to see and hear her like this. I always feel so angry or hopeless when I try to express myself when I’m struggling to put my thoughts into words. Or when pain or exhaustion overpower my ability to maintain concentration. She still expressed herself very well ( much better than I imagine I do under similar circumstances), but seeing her lose focus and work to reconnect several times makes me feel less alone in my struggle. ❤
I've been able bodied my whole life.... until now. I seem to have got long COVID and I relate to a lot of the struggles you are describing. Low blood sugar (eating enough food and the right foods!) are huge for making me not feel awful. My coworker has had chronic conditions for a while and between her struggles and your videos I have learned so much about how to be kind and patient and understanding if people have ongoing health issues. But I never realized how soon I'd need them for myself. Learning to pace myself is hard and learning what helps me be more functional has been a journey. Thank you for talking about these things and educating me... I'm far more prepared for this sudden change in ability that I otherwise would have been.
Ack! I HATE having to pace myself. It took forever to drill it into my skull that pacing myself increases the chance of having some energy at the end of the day to do something I like. For me 'pacing ' means taking a break even when my body insists I don't need one yet. Sooooooo frustrating.
I wish my parents understood these things. I’ve been struggling with chronic illness and chronic pain since birth (I was born with an Arnold chiari malformation). I also have fibromyalgia, supraventricular tachycardia, POTS, hyper mobility (it causes my hips to dislocate), CPTSD, and I also have a highly compromised immune system. I’m now in my 30’s, but I actually had to start managing my own medications before the age of 10. My mother knows that I need my medications to survive and function, but I can’t even take them in her presence. She makes me feel so, so ashamed and treats me like a drug addict. She will tut and shake her head while saying ‘God I hate that rubbish!’. If I mention needing to take my medication, she will go completely silent, shake her head and just say ‘mhmm’ while avoiding eye contact. I’ve tried to tell her that if she dislikes it, how does she think I feel about it? Yet nothing works. I feel absolutely disgusted with myself every time that I take any of my medications. I’m trying very hard not to feel this way, but it is incredibly difficult to fight this ingrained habit 😔
Your mum is PoS. Jfc. My mum is a PoS and even she doesn't do this. I have had a few comments from people over the years, but mostly it's just friends saying "Why don't you rattle?". Is your mum one of those anti-vaxxer essential oil types? I suggest watching some videos about how much damage people like her do to society, which often results in sick and dying people being scammed.
@@BunnyRabit-yo3lx Thanks for caring enough to comment! It means a lot 🥹 I’ve been to counselling and psychologists with her and without her to try and resolve the issue. My specialist has also been nice enough to bring up how important my medication is every time my mother happens to be nearby. I wish I could say that any of those things had worked, but she is incredibly firm in her beliefs. Regardless of what any doctor says about the importance of my medications, she refers to it as me ‘taking drugs’ 😮💨. She puts herself on a pedestal because she refuses to take any over the counter medication herself. I don’t think that she particularly considers that I would likely do the same if I had a choice in the matter. Not only that, but prescription medication is not the same as over the counter medications.
I’m so sorry you don’t get the understanding and support you need. My mom doesn’t believe in doctors and looks at me funny every time I go. I always feel like I have to justify myself even though uh, a herniated disc might be a good reason to see a medical professional. But sometimes she looks at me like I just told her I want parrot for dinner. Young people can get sick too, you know. :( you deserve better, and I hope it gets easier for you. I don’t really know what else to say ❤️ I found it gets easier to just be okay with being uncomfortable and looked down on. I think I’m pretty cool, and I’ll do everything I can to take care of myself, with or without support
Your mother is treating you so unfairly. My parents also didn't believe in medication. To this day, any time I am doing better, my mom tends to underestimate the necessity of my medication and thinks that it is something that should be hidden. To some extent, I understand her, because many people do judge us for needing medication. I have a severe case of schizoaffective/bipolar disorder, and I think the misunderstanding is that she doesn't realize that my regular use of the medication is what helps keep me well. She told me, "I don't think of you as ill" even though she's watched me be hospitalized on multiple occasions. I understand that what she was trying to say was that she doesn't define me by my illness, but it still felt invalidating. Maybe one day I won't need medication anymore, but for now, I take it religiously, because I can't afford to become manic. I have too much to lose. I know that bipolar disorder is something that can improve in your 30s and 40s, but it won't if you aren't properly medicated until then, because severe episodes can damage your brain. I don't romanticize the possibility of going med-free. I just do what works, and you shouldn't feel bad about doing the same and looking after your health. I hope you are able to find some peace amidst everything that you're going through right now.
the constant fear of growing old and having the already debilitating symptoms become unmanageable is so real. every time I am confronted with my parents aging I mourn my own future-- if I had life changing symptoms at 10 years old it's hard to imagine what it will be like at 60, or even 50 or 30. hard things. thank you for talking about the grief that comes along with chronic pain!
i resonate with this so much as an autistic person. the grief of accepting that certain things will always be hard comes up all the time, but i am proud that i am beginning to learn ways to accommodate to myself and help myself cope and i do have hope that will continue to grow. thank you for your honesty and openness ❤️
I heard another adhd creator point out once that "If I were being lazy, I'd be having fun, not screaming at myself to get up and do something while I'm doomscrolling on the couch." That really stuck with me and has helped me realize that I've internalized a lot of my parents' disdain for my bad days where I can't do much but watch tiktok and scream internally.
@Breathefreemylove It definitely can be. Now it's not necessarily a disability in that you'll get assistance from the government from it, but depending on the severity it can definitely impact your life. Even just taking some of the medication to manage it can impact your life and health.
@@BreathefreemyloveMost long-term medical conditions have the potential to be disabilities. Asthma can certainly be disabling, so it can be a disability. But it's for you to decide whether yours affects you enough that it's disabling for you personally. :)
Thanks for taking the time and energy to put this video out Jess... I have Long Covid -- it has made my Fibro, POTS, and some of my executive functioning struggles from autism worse... actually, it's just been awful - thank you so much for the reminder that I'm not alone - I'm not the only one... and even if I'm not getting "better" - it doesn't mean that only darkness awaits me for the rest of my life. I needed to hear that today... I am grateful for you...
It's pretty sad when you think about how many people are struggling with longcovid but we all still feel alone... I've had it for 2+ years now, and it's tough. I also relate so so much to the things jessica is saying in the video about struggling to decide which things to cut back on and what to push through for... For a time I also really struggled with feeling like a burden to everyone and not being able to 'keep up'. And i'll be honest i ended up in a pretty dark mental place until my therapist prescribed me antidepressents. It's been a lot easier to handle everything now, I'm still spending most of my day in bed, but at least now I'm lying in bed smiling😂
@@therese1806I so feel the point about feeling alone even though there's so many of us (and there will continue to be more), i think it's cause the world has "moved on" and is pretending we as well as COVID doesn't exist anymore 🥴
I totally get this idea. I have multiple invisible disabilities, both physical and mental, so I have struggled a lot with existing my whole life. Recently though I've been managing them much better. Interestingly I've noticed that that makes them less invisible. Because instead of trying to appear "normal" I now do what works best for me. And, for example, when you start only communicating via writing for seemingly random periods of time most people think that means you've gotten worse not better. But one of the main skills I've been learning is letting myself be disabled.
I’m still trying to appear “normal”. People become unspeakably cruel when they realize you are vulnerable. And they stop helping you once they realize that you will *always* need help. It sucks and is exhausting, but it’s how I’m trying to survive.
@@kagitsune Definitely. For me it's all about the balance. I try to take advantage of the situations where I can totally unmask, so I have more energy for the rest of the world.
The worst part of chronic pain for me is the loneliness I feel like right now, when I am desperate for anyone who understands what I'm going through to just hold me
Adhd meds helping with pots symptoms makes sense as they are generally stimulant medications where one of the concerns is that they raise blood pressure and heart rate. Which would combat the drop in blood pressure that is the main issue with pots.
This sounds so promising! I have pots and am going to ask my dr about adhd diagnosis soon. Can i ask, do you know what adhd meds may help with pots? Or all of them? My blood pressure is low all the time and gets worse when i stand up so I'm hoping adhd meds could help with that. Thank you
Like many in the comments, I’ve also been dealing with chronic issues including fatigue. In my last doctor appointment she finally said she wanted to try the stimulants to see if it would help me recover some semblance of normalcy. Which had me so excited because I have heard from other ppl how much it helped them. Cut to me picking up the prescription to find out she changed her mind and put me on sleeping medicine because “maybe I’m just not getting enough rest.” At this point after this many years I don’t even know how to talk to them anymore because it does in fact appear that they never listen. Sometimes it feels like dealing with doctors is just as challenging as dealing with chronic illnesses.
@@anyalazor7978 that was a comment on the fact that she said that her adhd medication also helps with pots. Realistically pretty much all of them except for specifically non-stimulant options are stimulant based. Beyond that its mostly a, I would like adhd meds because of these adhd reasons and then if they ask about concerns with stimulant vs non-stimulant just that you arent worried about stimulant medication.
I was 11yo when my diabetes was diagnosed, 1987. It didn't help that old people were crying that I'll be blind and soon loose my legs. Doctors and nurses were trying to convince me that in ten years diabetes can be cured. Such bulls**t. In reality I've learned to take care of myself and equipment has evolved greatly and made it easier. Having chronic illness is mentally very taxing, 'cos you'll never get vacation from it. Let it be for one day and you'll feel like s**t after it. I'm just trying to say that I understand what you're saying. My diabetes will never go away but I can live with it. Sometimes it's hard but there's always good days too.
As a young chronically ill person this is strangely reassuring. It's not going to get better and that's ok. College had me thinking "the future will be different" etc but I'm OK with it just being like this. I'm in pain and that's ok.
In a way the future IS different - if you learn to cope and handle you illness better than before. Even if your illness is not going anywhere. I've been hoping I'd get my asthma somehow calm down (which does happen for many people, they just take meds and are mostly ok). Along the years I've had to accept that it won't happen for me. Still, I've also accustomed and adjusted my life, so it's easier. For example in the springtime I'm still complaining, but I also know what I can expect and avoid trying too hard because it won't work anyway, saving me a lot of of struggle.
everything you've had to say is so relatable. i have an ex-friend that just doesn't understand disabilities and/or invisible illnesses, and she just made me feel like absolute garbage for not being able to do all the things that everyone else can do all of the time. she refused to be understanding of my needs and respectful of my no's, and this has just helped make me feel like less of the "bad" person she wanted to paint me out to be for having to say no and prioritize my health. i hate that either of us have to think about all of these extra things, but i'm glad that you're being honest about your experiences for those that might not understand right off the bat to be able to learn from. thank you 🫂 sending you, Claud, and Rupert so much love! 💜
I'm not doing very well atm and don't have in person support. It was comforting to hear that others are also fighting their intense battles. Thank you.
At 16:30 i think you made a very good point that "it doesn't get better but we get better at dealing with it" I think about my chronic illness like "it'll never go away but with practice it will be easier to live with"
I learned that my migraines were often triggered by missing meals! I started getting horrible vestibular migraines when I tried intermittent fasting to improve my cholesterol. Took forever to make the connection. I still get migraines especially because of the eating habits I got into while trying fasting, but they've improved so much since realizing I really do need at least 3 meals/snacks a day.
I have the same problem! I have other triggers as well but missing meals is a huge one (it causes my gi symptoms to flare too). Cut to me in a group setting getting upset when everyone’s taking forever to decide what to eat or if they want to eat yet and they think I’m just “hangry” and impatient and it’s like no, if I don’t eat soon the rest of today and tomorrow will be shot
I get vestibular migraines too! Mine started by being triggered by viral illness. I think another trigger or exacerbator is stress, I was employed by what I have come to realize were ableist people (they transfered my very nice boss) and I swear the pressure to predict my migraines with a crystal ball for them and not miss work made them last 3 days, one of which I can hardly walk, even when I took one day off. My medicine does nothing for them so my doctor reccomended taking magnesium twice a day to try to prevent them instead. After I was fired- and I had a viral illness at the time- I have only had one VM and it was one day. I suppose it is much worse to push through and worry about how you will be treated! When I'm not being hurried off to work I can focus on resting and making sure I get food into myself and as soon as I can. Interestingly, similar to Jessica, I probably have CTD and I think I have autonomic dysfunction, but I am having trouble getting diagnosed. I'm not sure if it's the right diagnosis, but my mom was diagnosed with Marfan's syndrome in the 90s, but me and my sister have symptoms and have not been successful in getting a diagnosis. There is so much more research on the effect on the nervous system for EDS, and the research is so much better in the UK, and I appreciate them so much for it. I also have GAD. I neglected my anxiety med at bedtime last night and I had 5 nightmares in a row. They were all very real like I was actually walking around my house flipping on light switches, checking the windows, but there is an alien in my living room. I had to take it and wait for it to kick in to sleep. My dad is very resistant to my crusade to get help but last month I fainted waiting for my perscription and he had to wait for me to come to consciousness and he said I turned white, I'm 26. I may have to seek disability instead of working. There is no benefit without diagnosis. I only found resources for EDS AD treatment but there was about 15 medications suggested for it. I don't even know if I have OI or POTS yet. I'm not allowed to drive for 6 months. Very frustratingly, it seems to come and go so my doctor thinks I look okay and I get surprises, as far as dizziness goes, but I have IC and constant issues with my stomach and pelvic pain. But he insists there is nothing they can do for me because that's what they told my mom. I'm in process of convincing a clinic to give me an appointment 😡 when I have a referral and next week I get a heart monitor on to see if my heart is why I fainted. Wish me luck I suppose. I don't know how experienced you guys are in this, but I have had 3 family members who had acute heart problems after being healthy, migraines run in the family, and my uncle snapped his achilles tendon without trauma like it had been cut.
@@evren5642Girl, yes! I get nowhere when I complain about it but in no uncertain terms can I wait to eat when I need to. I will get a migraine, and then I will be on your couch and you will have to take me home, and I don't want to come to yours next time. I cannot usually hang out with my sister anymore because she only wants to do so spontaneously, she will insist she picks where we eat, which is usually somewhere I cannot eat anything, and she will insist we don't leave the house until 9 or 10 pm when I said I need to eat within an hour at 6/7. Even if I offer to buy coffee and something to eat for the group. It really has strained our relationship that she does not seek to understand, and it really upsets me. Her bf is sweet but he is not confrontational so he always argues for whatever she wants. She also punishes her friends for standing up to her so they don't. If she were not my sister I would not spend time with her at all.
Saying no is so very hard for me to do. I don’t want to miss out. I feel lonely. But my body doesn’t cooperate with me often. I feel your pain so much.
Jessica, I've followed you from the very start. Even if I hadn't found you on my own already, the combination of your use of crutches and your aesthetic meant that everyone I've ever met sent me a link to your channel at some point. (I also went mini-viral during the straw debacle....you truly did me a solid on that one.) I'm halfway through this, and I'm sitting here with tears streaming down my face. I had a horrible terrible appointment yesterday with a neurosurgeon--one of those where their shoes are already pointed toward the door before they're done introducing themselves--and I just so desperately needed this today. I mean, words cannot convey how much I needed this. I took my daughter and dipped from a really abusive marriage not all that long ago, and it has been orders of magnitude more isolating than disability and chronic illness have ever been. This video was really important for me today, it made me feel like less of an island, and I thought you should know that. I've been on the receiving end of the weird, parasocial thing, so I try to guard against getting too personal with comments. But I also think that sometimes it's really important on just a basic human level for us to know that we've done a fellow someone a kindness, intentional or not. I think it's good to know that just by sharing your experiences, you made my day a bit easier...when I really needed it. Thanks, babe. 💜
Became significantly disabled at 58, and crushed to the ground at 60. My home, my life wasn't set up for disability and every week found the can't do list got longer and my world got smaller. Some friends told me I just need to pray it out, have faith, be positive, push through. None were there when I fell... again and wet myself getting up or so weak brush got caught in my hair and napped with it there or choked on oatmeal or dropped the 9th fragile thing in a week or lost my balance trying to sweep up glass before dog walks in it. I never thought I would lose biking, hiking, skiing, travel, writing, doing storytelling in such a short time. Basically am canewalking invisible dead. Oh and my mind that still sees me as productive active nurse dies a bit more each time an 84yo offers physical help or tells me I am too young to be disabled.
:Pray it over" pisses me off so much. People who have the Christpill work for them just have no sympathy to the idea that not everybody gets to be them.
The conversations with older family members/colleagues/etc. about their oncoming health struggles are sometimes a bit frustrating for me. If they say the words, "just wait until you're my age," 😂 oh...but my body already does think it's your age! Jessica, thank you for another wonderful video. I always feel so seen and less alone in this bodily struggle when I watch you. Take care! ❤ I hope the jet lag and fatigue ease up a bit for you very soon.
I had to learn to take a more emphatetic approach with my relatives when they complain about their new old age struggles. Being autistic my go to, very honest but perhaps not as kind, answer was usually "lol I know I've had that my whole life." But I noticed it hurt the feelings of my father - not because he doesn't think my issues are just as important (he's a great father) but because my issues do not make his issues any less real and valid to complain about. So nowdays I try to rather go with "I really know how that feels, you are not alone with that." But it can be insanely frustrating when someone talks about it only relating to their age and you're there like, dude don't you understand me and people like me also exist? We suffer from first moments on this earth to the last ones. Just have to make the best of it even with that and get some gentle cuddles and pets and care from your loved ones when things are extra hard. My boyfriend washes my hair when I'm really sick/in a lot of pain etc. And I love him so much for that.
I do appreciate these less scripted videos, especially with you all leaving in the side digressions and forgotten words. These are things I struggle with on my bad days as well and they are things that don't really get shown very often. Your work is so wonderful and appreciated.
I have long Covid and JUST got weird new symptoms (nerve pain and swollen eyelid)-- after FOUR YEARS. I also struggle with food, but more because if I eat just a bit too much, especially sugar (or if I drink alcohol), I get intense cluster headaches and migraines, plus heart palpitations and chest pain. People always think I'm fine because I generally look fine-- but I am NOT. So I stand in solidarity with you!
Oh! my! God! I also got the alcohol-migraine pipeline from long Covid! Haven't had a single drink in a year. A single sip of wine and my head feels like it will explode. I also still suffer extreme fatigue, muscle pains and very regular migraines from the long Covid (got it 3 years ago). Glad to not be alone but also sorry about it.
@@katlantas5674 I have begun to be able to have a couple sips of wine about once a month, but that's after four years of this, and more than that and it's a world of pain, so I totally hear you. Also, we're far from alone-- I'm in several long Covid groups and many have talked about similar issues.
I've gotten "get well soon!" wishes from the same people who refuse to mask and take other precautions which are really the only way for it not to get worse.
I have a chronic mental illness disrupting my life since I was 13. Whenever somebody tells me: "You look fine to me." I answer: "Yes, because on the days when I'm not fine, you don't get to see me."
Currently resting after caring for a mum with osteomyelitis - she's just been in hospital for 4 days and had to have a toe lopped off. We are both trying to balance our disabilities and our need for rest with the ever present financial and social pressures of being disabled and ill. I am glad to have this video for company.
I can't watch it rn, but 1min in and oh boy how I felt that. I spent years being medically ignored and with wrong diagnoses, I'm only getting the right diagnoses now (and some still being looked at) and I'm tired of doctors and of people telling me I'll be cured and I'll get better.
It might help to think of yourself as like a pet. We spend so much time, energy and money creating a safe and healthy habitat for our animals or even our pot plants but we often don't put a lot of thought into our own physical needs. We need healthy food, sunlight and clean air as much as they do. We need appropriate amounts of exercise, sleep and rest. We're mammals. We're animals. We're living things. We need nurturing too, even if we have to do it ourselves. I am working on giving myself as much care and attention as I do my dogs. I'm taking my vitamins, on a diet and spend a few minutes sitting in my massage chair by my SAD lamp every morning before work.
@@Draggonny This isn't helpful. I am not a pet, nor do I need such patronizing advice in response to a joke. I've lived with a serious neurological disease for a decade, I know how to take care of myself, and have a better quality of life than most with my disease. Some of that is luck, some of it is work. I put immense effort into managing my illness. That taking a night off to just be free once in a while and making a silly comment about it warrants being spoken to like a dunce who just needs to feed and water themselves is pretty silly.
I can't stop crying. You said all the things I'm feeling and made me feel safe and kind with myself. I'm 21 and been diagnosed since I was 10 and I've struggled with it the entire time.
I have long covid and it is sometimes hard to face the fact I don't know when and/or if I'll ever get better. This really genuinely helped me understand that it's okay either way, and even if I don't get much better what awaits me can still be positive. So thank for this, and keep up the good work!
Thank you for this. My mom and many doctors were always convinced I’d be healed somehow. I never thought I’d live until 30 so now that I’m in my 40s and still alive and still managing with this illness it’s a wonderfully confusing time.
Thank you for this. It was a relief to hear someone else say that "yes, I could push myself to do this big thing that would be really fun or meaningful... but I have to accept I couldn't. That makes me unhappy, but it's what I have to do." The idea that it's okay to simultaneously turn down big things that could be meaningful (but draining) without punishment or scolding attached is a new idea for me. It's hard not to be an overachiever as a chronically ill person- we're judged if we aren't! I've been trying to learn to see and appreciate those "little drops of happiness" you mentioned and not feel guilty for pursuing them, instead of saving my energy to chase bigger things constantly. While unchecked consumerism isn't a good thing, sometimes we just need a new lip gloss or an hour to watch tv to get us through the week. We aren't lazy or somehow not "appreciating how lucky we are" when we seek out small drops of happiness when we can afford them. I believe you mentioned in the past that you kept a journal of how you felt that day without judgement. That you were brutally realistic about what you could do that day, and it was frustrating and upsetting to acknowledge those limits and recognize that you could not push yourself. However, you also mentioned that the process of learning your energy limits unexpectedly brought you more energy in the long run because you weren't pushing yourself so hard. I'm hoping allowing small amounts of happiness into my life where I can will have a similar effect. Maybe I'll have more space to work toward those big moments of happiness... and appreciate them more when I get there. Will I look back at earning a new in-game cosmetic in 50 years and say "ah yes, those pixels for my avatar brought me limitless joy, it was a meaningful achievement!" No. I may not remember it at all. But I think I will say that I am grateful I allowed myself to be happier in the moment, instead of pushing myself to find a more "meaningful" moment of joy every second of every day. Years spent in misery to achieve one brief moment of joy are still years of misery. Nothing can bring those years back to make them less miserable. Allow yourself small joys while you can. You deserve happiness now and later. You should have both.
So many good points ❤️ the related fun paradox is when someone asks "why can't you do this thing? You seem to be managing things so well!" And the answer is "making these decisions to not overextend myself is a crucial part of managing my health; you are witnessing the results of my progress in learning how to take care of myself!"
This is so relatable and I needed to hear it. My mom is included in some of the people that tell me oh you're getting so much better and every time I have to remind her no I'm just better at dealing with it and better at hiding it from everyone. She gets upset but I think it's good to keep an honest understanding about what my body is and what it will be in the future.
Been diagnosed for only 3 years now. Every time I start to think "you're starting to manage, good for you" something new hits and the grief of diagnoses starts again. It helps to think that at some point it may plateau and I'll have figured all the quirks out. Thank you for being so positive even when you're on a bad day. Today has not been a good day for me, your video helped. A lot.
My family definitely doesnt understand that I'm not going to get better. It makes me start to feel like I'm just not trying hard enough, or at least they must think that about me. The line between acceptance and complacency is very fuzzy. Thank you for being here for us Jessica ❤
I really needed this video today. You've been such a comforting person in my life through your videos since I was a teenager in high school. I was diagnosed today with Lupus and I've had my diagnosis of Hashimoto's Disease for a little over a year now - both of these things I've had in my life for years before being diagnosed. You've helped me develop a more neutral/accepting personality towards these things and helped me feel less alone. You're amazing, Jessie!
My chronic illnesses have become worse with age. I used to think I'd beaten it every time it was in remission, but it was actually recurring with a pattern. 12 years ago I realized I had to accept that it wasn't going to get better for good. I went back to my life over a dozen times, then my body was no longer capable of recovering. Nobody told me about pacing and other skills until I was debilitated and it was too late for them to be meaningful. I mostly had to claw my way back myself. People always had the same expectations of me as anyone else. Now that my chronic illnesses are severe, they still don't have a clue. My loved ones know that I'm living a nightmare with this in the US. It's true, but only makes me feel bad. So many people tugging on me in different directions now that I'm end of life: die already, live forever, do what I want you to do. They all conflict with each other, myself, and my doctors recommendations. It sux.
People - perhaps especially family - often can't reconcile achievement and disability. I've had huge problems with family not being able to get their heads round both parts of me. It was especially hurtful when I had the biggest event of my career and my parent showed little interest in attending. I feel like people are only open to haring the stuff that reinforces their existing view of me as A Poor Disabled Person, yet they also struggle to take on board the specifics of that when they contradict certain family narratives. Anyway, thank you for being so real with us in this video; this is all stuff that I think many of us really struggle with as we age and our lives change and yet our disabilities are always still there needing accommodated.
I have EDS, and POTS and CFS as well. I'm turning 41 this year so I'm only slightly ahead of you in my life journey. It's been hard, specially the lack of true rest and the waking up to feeling stiff and in pain, but also going to bed aching and tired. I totally sympathize with the 'waiting for the old age issues'... my hands have been getting more and more sore and achey lately specially when the weather is changing, the joints stiff and inflamed. I find that holding things cramps them, and I cannot open jars and such. I know it won't get better, and I think it's hard to live with that knowledge. I do appreciate my friends and specially my partner in that regard. They do what they can and do not judge me for being 'lazy' like my family did. You learn to find people who understand you, who accept your limitations and are willing to work around them.
Ugh I completely relate to "only passing on the bad" and completely glossing over accomplishments. SO frustrating. You're an absolute superstar Jessica, thank you for sharing and making us feel seen and not alone! 💜
The best part of chronic illness is the people I've found who understand. They are delightful human beings - kind, thoughtful, resilient, understanding, and accepting above all else. We take care of each other and we protect each other, and we love each other unconditionally. Thank you for showing up and sharing so vulnerably for all of us Jessica, you are an absolute gem ❤
I appreciate how open you are when it comes with dealing with your chronic illness and making things not seem all rainbows and butterflies. I personally have a hidden disorder and people have such a hard time understanding that not all bodies function "normally". We just learn how to work with it and what it takes to make it be ok.
I really relate to what you were saying regarding having to choose to miss out sometimes on things with Rupert. I have two kids and yeah, sometimes I have to choose to sit something out, usually to conserve energy or recuperate for something else. I rarely do pool time with my kids on vacation because usually I’m resting from our earlier activities so I have energy for later activities. And it’s really hard. But I’ve seen my kids understand and enjoy the time with daddy and then enjoy having me back when I’m able. And sometimes, I do push myself even though I know I’ll pay for it later.
I know what you mean about the time with your kids. I used to feel horribly guilty about missing out on time with my two children, but I now realise that if I accept the help that is sometimes available to me, then we all enjoy our time together more and I don’t completely exhaust myself and also become more ill.
@@HS-pw5lf yes! I definitely had a lot of mom guilt and it’s taken time to adjust how I view things. It’s nice for my kids to get some time with just daddy and I think it’s better to work on quality over quantity when it comes to the things I do with the kids. If I’m exhausted and in pain, I have less patience with them and I don’t enjoy my time as much as if I do less but can have a better, more enjoyable time. It’s not easy to navigate these things though and I know we’re doing our best.
Missing out of experiencing something through your child is hard. Teaching a child to listen to their bodies and that it is okay to say no is so powerful. I am 38 and still learning this.
Just recently diagnosed w/ LONG COVID, hEDS, POTS, ME/CFS, etc... and I have been losing it when people say, "it's such good news! Now you have a diagnosis and will get better." This video is the biggest morale boost I did not know I needed. Blood sugar issues : BIG TIME.
You asked and now shall receive my current blood sugar related traumas. I probably need to get on a regimented diet to help with this but I find I really struggle to eat before like 11am no matter what I do and for the last 6 month or so this has become a major problem for me. So essentially I have to stop eating at 8pm to take my before bed medicines (woo chronic illness life?) but I can’t make myself eat until after 11 because it makes me feel physically ill. So going over 12 hours without eating makes me have hypoglycemia and then I get a migraine no matter what. It doesn’t help that I’m almost 30 and finishing out a masters program and teaching so my schedule is never really set. Also if I try to explain any of this to anyone I look like a whiny freak because I “don’t look” like I have problems.
Thank you Jessica for this video. I discovered your channel today and it's wonderful! Your content really does me a lot of good. I was diagnosed with an incurable chronic disease last May and I have not yet managed to develop a strategy to better manage my severe pain and fatigue, nor to use my "spoons" well. But your videos encourage me to believe that I will succeed at some point! You are inspiring and radiant, and I wish you the best - before and after your 60th birthday 🙂
I have multiple sclerosis which is a chronic disease that actually worsens over time. Thank you for this presentation on chronic illnesses. People often do not understand issues like fatigue. If I push myself to participate in an outing, then I have to spend the next day or two recovering. We call that paying the MS tax. I appreciate you addressing some of our common issues so very much.
19:53 this is the thing I struggle most with. I have hEDS, POTS, migraines, IBS, insomnia, and several other conditions and one of my parents is a real spoon-drainer but I still love them and I can’t really cut them out of my life. All I can do is set firmer boundaries over and over while they chip away at said boundaries over and over. Relationships are so complicated and I wish it was as easy as “this person drains me all the time, no more seeing them!”
I had a terrible migraine yesterday and am watching from you from bed. Fibro, POTS, MCAS, IBS... all the things. Eating can be so hard. Smoothies. When I am exhausted and not hungry but know I will crash if I don't put calories and the right calories into my body I can sip on a smoothie over an hour. They were also great when my nibbling was a toddler for both of us. You are doing such an incredible job. Thank you for sharing on a really vulnerable day. The struggle is real and can feel impossible some days but there's also still happiness and joy. Thank you for this video. Thank you for being you. How you feel is Valid and relatable. Side note, I've been joking since I was a teenager about what a great 80 year old I'm going to be. I've got it down now so I'm going to rock it later. Sending love, rest and 🥄🥄🥄
As i aged (and im still quite young, early twenties!!) my lifelong migraines went from lasting 3 days at a time to 3 weeks at a time. I had to drop out of university to deal with them, only to realize it was not, in fact, going to go away. A year later I re-entered university and absolutely failed my courses. Now I am doing very well in my courses, but my migraines have not changed- I just got better at managing myself and my work. I often feel frustrated and wonder when I will get better… anyways, thank you for your videos! They bring me so much joy and hope and a sense of understanding. ❤
I also have EDS, POTS, MCAS, and some other undiagnosed stuff because I'm just *too* exhausted to handle more doctor visits right now. Your videos, especially this one, are so validating. I'm working on accepting my limits and being kinder to myself and my body. You've helped me better handle it all and explain it to people soooo much. Wishing you more "good" days 💙
I remember being in an uber and the driver had just loaded my wheelchair into the car. He came in, sat down, and said "Don't get old, your body starts falling apart." And I just stared at him in disbelief until he realized what he said and let out a little "Oh". I loved this video. I've been diagnosed for about 3 years now and I think I'm just starting to accept that this is forever, just a little bit. I'm hopeful for the treatments my new doctors are throwing at me. But mostly I'm just learning how to make bigger changes in my life to make things more accessible instead of waiting to get better - like a car with a ramp or shelves that pull down, not fighting my body to not use my wheelchair because I think I can today. Just use the mobility aid and save your spoons for more important things than proving you don't need the assistance. Watching your videos has helped me accept a very sudden change in my health from well to unwell. So thank you.
You reminded me of this person that said somewhere: "At this point the only consistent thing about me are my inconsistencies." and oh my goodness, this is so relatable to so many people. Me being one of them as well. I only wish it was easier to diagnose chronic fatigue. Some people have to live with it while being ignored by a lot of doctors. And there's no way to get the treatment for it. As you mentioned: someone has to learn to manage it better over time. It can steal the joy out of life, unfortunately. Greetings and love from Poland.
I appreciate these videos so much. I have depression, anxiety, adhd, fibromyalgia, hypermobility and recent I've had to add polycistic ovary syndrome to that list. I'm glad someone has the courage to use their platform to advocate and talk about their disabilities and to say what we all go through as disabled people: it doesn't get better, we just find ways make it work. Thank you so much for speaking your truth, Jessica.
I deeply appreciate these videos, Jessica. Seeing someone online speak in the way my friends and I do (adhd) is so refreshing and honestly keeps me more engaged. I'm also currently trying to figure out how to approach my doctors with the "I think I might have chronic fatigue" thing, so it's just reassuring to hear you talk about anything to do with it.
man i sympathize with that feeling of having the opportunity to do something for work that seems cool and not being able to do it. there is a small greenhouse/farm plot nearby where i live that is hiring. they sell their crops very cheap for the needy in our city. it sounded so cool, but obviously being a farm, it is very physical. i have worked physical jobs for the last few years and it has done terrible damage, and now i cant work anymore. but i wanted so bad to work at that small farm, and i cried realizing i couldnt. my family just thinks im lazy, but i genuinely cannot find a job i could do without doing more permanent damage. they dont even know how bad i want to work a job with a tangible, physical effect on the world around me, no matter how "indignant". 😢
That is so true! Thanks for sharing your thoughts and feelings with us! It helped me a lot when I started to accept that my chronic pain will probably never totally go away and that's fine. Other people, even doctors, are often quite shocked when I tell them that I will probably never be "healed".
I have rewritten the comment quite a few times, as I have had difficulty finding the words to fully explain it. I've suffered from depression for several years now, and honestly, it's quite debilitating. its difficult just getting out of bed in the morning sometimes, and if I do I find I just sort of float on those dark days, aimlessly doing nothing. Then I have the good days, where I can do alot, and I feel very happy that I can. Hearing you talk about it not getting better, but it doesn't mean everything is so dark, is actually very uplifting. I feel like I might even be able to reframe some of these mental roadblocks in a way where I can find some peace in both the dark and light days. I didn't really understand what people meant when they called someone a "light", but this is the closest I've understood it. Jessica, you are a bright light. I'm really happy I've found your content, and its brought me a great deal of solace. And for that, I thank you.
It's nice to hear someone else say that they view their body as a separate entity that they need to take care of. Thank you for this relatable content, ma'am!
i know it's not exactly the same but i feel this so miuch with my anxiety, jessica. after almost 10 years of diagnosis it's now not 'when will i be better?'' but accepting that these things eb and flow and progress isnj't linear. these things don't go, and they never stop sucking, just sometimes you're better able to deal with them.
Thank you. I'm watching this while waiting to get bloodwork done and knowing that the required fasting is giving me a migraine. And it helps me feel better about the fact that I might not be able to eat in time to keep it from being a really bad one. This is supposed to help me, but OOF is it messing me up in the short term. But it's okay, if I have to use my sick time, I can. I have enough. And I even have the official disability paperwork now.
I can relate to this. I've got a number of chronic conditions post covid in early 2020, and it has been almost impossible to parent as I would like, let alone any hope of working. I think it's impressive what you do manage to do.
Thanks to you and your channel I have been able to become diagnosed with hEDS and some other diagnoses that have been long awaited. I am on my path to a better life and learning to take care of and learn about my body and myself in new ways and making sure I appreciate things more.
Jessica, as a 38 year old mom with chronic illness myself, this was really meaningful to me. Thank you. You're not alone. I feel so much of what you're going through.
Such a revelation to hear you say (paraphrasing) "in 3 months I'll have completely forgotten I didn't go to this thing, but if I go I'll remember forever how miserable it was." That is SO REAL. FOMO used to constantly get me into theoretically fun situations that were in reality miserable cuz I didn't have the spoons. So friggin glad to be older and wiser.
Yes Jessica, people in general just don't seem to get it that a percentage of us are born with a chronic illness that never gets better (even though somewhere down deep we hope that it will). But life goes on and we learn to treat ourselves better, and slowly learn the triggers that magnify our pain and how to hopefully negate those triggers. Life goes on and I am approaching 70 so I've have already won in my eyes. Hope you continue to smile in the face of a life - dramatic and continue to win your body wars.
I got diagnosed with fibromyalgia at 17, after being bed ridden for a year, during which I was diagnosed with Mixed Anxiety Depressive Disorder. I was then diagnosed with hEDS, POTS, scoliosis/lordosis/kyphosis, and autism. I've also had autoimmune hypothyroidism since I was 7. I'm in my second year of college, and this hits quite hard. It's not that I'm getting better, I'm just taking the right medicine now, and doing my exercises, eating the right foods, etc, and generally working with my body instead of against it. I don't really /feel/ better, I'm just managing my body and illnesses much better.
Much love to you. I love your honesty and openess. I had open heart surgery last year to replace a valve and then a stroke a few months later. I'm only 28. Even though I'm over 6 months out from these, I'm still constantly struggling with chronic fatigue. It's been rough ngl. Some days are better than others. Caffeine takes the edge off sometimes but overall its a constant battle. Along with having ptsd its just a lot. People keep asking how im doing and its hard to respond. Technically im doing fine but also really not because if the fatigue and ptsd. Wishing you all the best from the US ❤
Lots of love to you ❤❤ I've had a valve repaired at 28 as well, it felt very weird going through that so young. All the patients were elderly people and nurses and doctors kept mentioning how young I was... Two years later things are much better fatigue wise, as well as mentally even though it's not a smooth linear thing. I wish you all the best. Ohs is a very rough thing to go through (I had minimal surgery and man did it hurt).
So relatable! Even people who've previously understood 'I'm not just X, it's legit' seem to periodically forget & re-remember. My natural inclination is toward eternal optimism and still get surprised 13+years later that I'm not 'back to normal' which, honestly, was often ill even before the damaging event in '11. Still my brain wants to believe I could, one day, run a marathon, or heck just run for fun. Meanwhile, back in reality, I rarely go anywhere & usually it's a doctor, I've not driven in over a year, and some days it's all I can do to get myself to the bathroom 3x in 24hrs. Life often seems to be a dichotomy for me. Do you ever run into doctors who don't get your condition due to you being better at managing your body? Wow I feel very perceived right now. Thank you so much for sharing openly. It makes a difference to know we are not alone in our experiences.
Chronically ill and suffering the flu 2 days after returning from six-weeks of caring for my father who broke a hip while fighting cancer and numerous neurological conditions. Much needed today. Thank you❤❤❤❤❤❤
Thank you so much for posting these. It really helped me not feel so alone when I was struggling undiagnosed. Seeing someone else that I could relate to helped me realise that I needed to pursue a diagnosis, which has been life changing for me and no doubt many others! These videos are so relatable and validating, and I'm so thankful for your willingness to be open and vulnerable with us ❤ ❤❤
Thank you Jessica, I super needed to here this today ❤❤❤ the stupid nonsensical guilt I feel for having a chronic illness that will never get better is really hard and all encompassing sometimes ❤ it is so disheartening and upsetting when well meaning friends and family make comments like “oh but you’re doing so well now! You’re so much better!” Like no every single day is a struggle I am just trying so hard to fit in and do the most I possibly can!! 😭😭😭
I like when you just talk and be open about things. I learn a lot from these videos and to consider different view points that I may not of considered in the past.
![You're Not Useless [CC]](/img/n.gif)
I’m not faking being sick. I’m faking being well.
right on the money
That’s an issue I have explaining my illnesses to people. Like do you realize I’m only 28 and I still have a lot of aging to do? We are waiting for arthritis and other regular old people stuff. What if I need my gallbladder out or something later? Will opioids help my chronic pain and then I’m an addict? People care more about the number of years you have. “You’re too young to use a cane!” “Too young to be taking it easy!” Well I’m trying to pace to make sure I don’t make my life worse for myself later, Karen.
My supervisor at work told me I'm to young to have chronic depression. Also, like, I'm 37?? "Too young"?? 🤷🏼 K...
@@supernova622 Oh yea, don’t we love like older or elderly people who want to tell everyone under 60 they are basically still a child and shouldn’t have any issues. 🤦🏼♀️ Ethel, please.
@@supernova622 wha? Literal children can have it
@@supernova622I've been battling chronic depression since I was 4, someone pls tell myself from ages 4-28(now) that I was actually too young for it the whole time 🤷🏼🤣
Too young to take it easy?? Forget chronic illness, this attitude is why so many young people are totally burnt out or falling for scams that promise to give you energy etc (when what they actually need is sleep and a balanced amount of leisure). It's even more important for chronic illness sufferers...
PLEASE never underestimate the value of these rest day videos. To know that there is someone out there that knows what your experience is like is invaluable.
our "non-better" puts them face to face with their vulnerability. They don't like that.
this!! it also means that they have to then actively choose to be empathetic and understanding, which so many of them don't want to do because it's "so exhausting" (likely related to motivators tied to their vulnerability like you mentioned)
I was told by a former friend that she was removing me from her life because she 'couldn't handle' what I was going through with my chronic illness.
@@lisam5744 i'm so sorry someone treated you that way. no one deserves that 💜 i very recently had to remove someone from my life- because instead of just being honest and saying what that person said to you, this "friend" attacked my character and told me how awful of a person i am for not being able to do as much as she could. so many people lack empathy for a cause that isn't fully their own and it's extremely disheartening.
@@courtney104 Yup, I've had that response from family, one actually said that I am "manifesting" my illness
@@courtney104 I'm sorry you had to do that. That people think they have the right to attack someone for an illness is just awful.
My last therapist told me something that really stuck with me. Now, I don’t remember the words exactly but she essentially told me that if it doesn’t seem like it’s gonna get better, the best thing you can do is just learn how to make living with it easier; Don’t fight it, work with it.
And that’s helped- so much.
There’s always a tendency to be told that our problems can be fixed, or will resolve, but they often won’t, be it fatigue, depression, anxiety, or other issues. But we can, with help, learn to live with things and live semi-functional lives. There needs to be better, more realistic education, and understanding of our limits.
Yep, I’ve been in and out of therapy since I was like 7. My mental health problems are here to stay. I haven’t “given up”, I’ve simply accepted it’s something I need to learn to live with instead of fix.
And I assume it’s the same with physically health issues as well.
Thank you for saying this truth. ❤❤❤
I agree - we tend to see our future selves as thin, or not in pain, or not struggling stilll...yet it never happens despite all the hard work. Even dooing things I love - that feeling of being punished for wanting a day out. 3 days in bed for 1 day out. But you do it because happy memories are better than no happy memories. Yeah - we need to accept oour limits!
It doesn't get cured type better but we learn to navigate our day to day lives better so it doesn't stay the same level of awful. There are ups and downs just like everyone has, they're just different things to feel good or bad about.
I touched my toes yesterday and proudly told my husband. He didn't get it. I explained "I've just touched my toes for the first time in my life". Then he got it and celebrated with me. What's completely normal for one person is a big deal to someone else.
Yes, it's something I have become very frustrated with in a lot of therapy and self help these days, it so often swings on claiming that there is always a way we can effect our circumstances and we just need to learn the tools and motivation to stop being too pessimistic and apathetic to see how to do so. So many people buy into this thinking now that there is often absolutely no empathy for people who are genuinely in a difficult position for whatever reason.
People need to learn that empowering someone and helping them develop tools to improve their life as much as possible may just mean learning the best ways to manage still very crappy situations sometimes, and is definitely not the same as saying 'pull yourself together, if you are struggling then it's probably your own fault and you just need to pull yourself up by your boot straps and fix it'
I love it when she lets the ADHD thought process show in her videos. I imagine it’s what it’s like to watch me on a meeting at work.
Wait, she has ADHD? It came to my mind when she lost her train of thought, but it was an isolated incident & I didn't want to assume more.
@@spaghetto9836 The video even mentions it as a text on the screen. It's no too many years since she was diagnosed with that, thanks to followers telling her to get checked.
@@spaghetto9836around 1 minute 30 ish she has a text on screen saying it in this video! but she’s also posted a whole video on it i think?
@spaghetto9836 i'm pretty sure she's made a video about her adhd diagnosis, yeah!
I also have ADHD and take medication for it, and fun fact - it also helps other parts of my life. It has an antidepressive effect on me (I'm bipolar), and hightens my blood pressure so I'm not so dizzy and lethargic all the time. And of course it gives me more energy and focus, so it's really a great medication that does multiple things! Just like for Jessica.
My Granddad is 84 and I'm 18, and yet in many ways we have similar ability levels. He's generally very sympathetic, he thinks about how well he was when he was my age, and says it's not fair that I'm so young and already have to deal with all these things he has to deal with now. He says I should be going out with friends at my age, not stuck at home with my Mum looking after me. Honestly I think he's right, but you know, I make the best of it.
It hurts right? We can't make the memories they did. Maintaining friendships is even harder.
I've had ME/CFS since I was 12 years old, and I am now 22. Less than a year ago, my ME went from moderate to severe, and I am now completely bedbound. In the past 3 years, I have developed so many new chronic conditions, including RA, POTS, EDS, migraines, etc. It's been hard, and my life has changed drastically several times. Despite all this, I'm the happiest I've ever been. I have an amazing support system, a great therapist, and am surrounded by people who truly care about me for the first time in my life. I've lived in fear of my condition getting worse for so much of my life, and now that it has, there's almost a kind of peace that comes from knowing that the worst has happened and it turned out okay. I'm determined to make my life one worth living, and I am very fortunate to have people around me who wish to do the same. I still have a lot of grieving to do, been kind of running away from that with toxic positivity, but I know I'll get there. Thank you as always for sharing your stories and feelings with us ❤
Oh yes, running away from grieving, very relatable😂😂
*NG channel announcer voice* *Голосом Дроздова* In the above you can witness a typical exemplum of running away
i also have me/cfs and have had it since i was 11, i’m almost 26 now. i’m there with you, very glad you have a great support system :-)
That is an incredible attitude!! When I got sick with cfs I felt horrible rage at the injustice of it.
@somethingsmatter There's definitely been some of that on my end too. My early life was full of injustice, so I was a little numb to it at that point. I have since been working on going back and fully processing everything. Sometimes bad things happen for no reason. It's not fair, and we don't deserve it. It's important to acknowledge that. I try to use that feeling of injustice as motivation. The world has tried to kill my happiness, and I'm determined not to let it. I didn't choose to play life on hard mode, but I'm going to find my own win condition.
@@kayleyanna3164 That's a fantastic attitude. Thank you for responding. i'm sending you happy healing vibes :)
I think we (as a society) need to be having the hard conversations about Long C0v1d.
Society won’t. It’d require everyone and our governments to start pretending to care again. (yes I am permanently enraged about this)
@@kagitsune I, too, am permanently enraged, on top of being baffled and heartbroken and so so tired. I see you ❤️
I think "people" are talking about it. The problem is that the vast majority of people aren't going to talk about things they don't understand nor will they discuss topics (usefully) where they are ill-informed, or unaware. There are also a lot of people who float through life with their head in the sand unless something hits them hard enough for them to stop being a zombie. I know a few people like that. Weirdly lucky, and honestly nice people but very very oblivious.
Sometimes it seems like "everyone" knows something but really we're just very much invested in our bubbles.
It took 20 years for the US government to recognize the damage done by Agent Orange in Vietnam in the veterans. It took less time for them to recognize the damage done to soldiers who were exposed to chemical warfare in Desert Storm. It was about 10 years. The conservatives screamed and hollered the whole way though and were constantly trying to cut funds to Veterans hospitals.
When everyone was stuck at home for COVID, I was kind of hopeful that people would be more understanding about how living life at your house is pretty rough. But I think they've forgotten.
They have. They don’t want to remember. I am forever livid and how easily they cast off concern for our lives.
It really is rough. I've been doing it for maybe 5 years now and it's starting to feel unsustainable. I don't think I can keep going like this. I'm not sure what to do. Any tips? Dw if not
I feel you! People always saying ‘I hope you’re better’ or ‘are you better yet?’, ‘you don’t look ill though’ 🙃 sometimes it’s sitting with the unknown, the uncomfortable and the darkness. Thanks for your vulnerability Jessi ❤
It's tough, it feels like no matter how many times we remind our friends that this is chronic they just forget about our illness until we mention it again, and they always respond to it as if it's new and temporary and some hardship to overcome. We'll just casually mention chronic pain, not even be in a bad pain day, and it's a million hug emojis and "I'm so sorry" and "sending good vibes" and "hope it gets better" like no, it won't, we've told you time and time again this is just our life, disability is value neutral, please
*we use we because of our plural identity, not trying to speak for everyone who's disabled or anything
I have switched to, largely, “May all go smoothly,” cause I feel like across illnesses and injury, aspects of all interactions related to that can go more or less smoothly, like dealing with the bureaucracy of healthcare and benefits or managing the other junk. Sometimes when stars align that smooth thing may be recovery, but it may not.
I try to take comments like that not as "you're better so you're cured and not struggling" but rather as "not having your worst day". Ie they're celebrating that you're managing better and having an OK day rather than a bad one. Ie better as an improvement not as an absolute
@@nicolabannister3582 Ditto. I totally understand the frusttration w/ hearing that from loved ones, too, but imo assuming good faith & like re-translating it is helpful to actually understand what they're trying to do, which is be supportive.
THE "U DON'T LOOK ILL THO" HIT HARD
As a disabled and chronically-ill married lesbian, who is not handling it very well at 30, this video felt very comforting. Thank you so much.
Watching your videos lately has been inspiring to make changes to what I'm going through, or at least trying. Thank you.
I hope yall have a prosperous year ❤
I have family that constantly ask when I’ll “get better” and “what’s the point of going to the doctor if you aren’t getting better?” I have friends who are also disabled and their families ask the same questions. Its exhausting that in 2024 ppl still don’t understand what “chronic illness” is. It helps to talk to ppl in our community though and confirm mentally that we ARE trying and we ARE thriving to the best of our ability ❤
“what’s the point of going to the doctor if you aren’t getting better?”
uhhh, not getting *worse*?? do these people own brains?
@@comradewindowsill4253 for real. Like not getting worse is just as helpful as getting better. Symptom management is vital.
@@comradewindowsill4253 Exactly!
Jessica’s stream of consciousness, from bed videos, are always so powerful. Thanks Jessica for showing this side of your life. It is so important to show people that they are not alone.
It’s so helpful to see and hear her like this. I always feel so angry or hopeless when I try to express myself when I’m struggling to put my thoughts into words. Or when pain or exhaustion overpower my ability to maintain concentration. She still expressed herself very well ( much better than I imagine I do under similar circumstances), but seeing her lose focus and work to reconnect several times makes me feel less alone in my struggle. ❤
Yep, it makes me feel very seen cause this is my brain a lot
@@waffles3629 ❤️
I've been able bodied my whole life.... until now. I seem to have got long COVID and I relate to a lot of the struggles you are describing. Low blood sugar (eating enough food and the right foods!) are huge for making me not feel awful. My coworker has had chronic conditions for a while and between her struggles and your videos I have learned so much about how to be kind and patient and understanding if people have ongoing health issues. But I never realized how soon I'd need them for myself. Learning to pace myself is hard and learning what helps me be more functional has been a journey. Thank you for talking about these things and educating me... I'm far more prepared for this sudden change in ability that I otherwise would have been.
I'm so glad you had that preparation. We're in this together
Ack! I HATE having to pace myself. It took forever to drill it into my skull that pacing myself increases the chance of having some energy at the end of the day to do something I like. For me 'pacing ' means taking a break even when my body insists I don't need one yet.
Sooooooo frustrating.
What food are good for you??
I wish my parents understood these things. I’ve been struggling with chronic illness and chronic pain since birth (I was born with an Arnold chiari malformation). I also have fibromyalgia, supraventricular tachycardia, POTS, hyper mobility (it causes my hips to dislocate), CPTSD, and I also have a highly compromised immune system.
I’m now in my 30’s, but I actually had to start managing my own medications before the age of 10.
My mother knows that I need my medications to survive and function, but I can’t even take them in her presence. She makes me feel so, so ashamed and treats me like a drug addict. She will tut and shake her head while saying ‘God I hate that rubbish!’. If I mention needing to take my medication, she will go completely silent, shake her head and just say ‘mhmm’ while avoiding eye contact.
I’ve tried to tell her that if she dislikes it, how does she think I feel about it? Yet nothing works.
I feel absolutely disgusted with myself every time that I take any of my medications. I’m trying very hard not to feel this way, but it is incredibly difficult to fight this ingrained habit 😔
I'm so sorry you are being treated this way. This is emotional abuse in my opinion. Could you seek help from a counsellor?
Your mum is PoS. Jfc. My mum is a PoS and even she doesn't do this. I have had a few comments from people over the years, but mostly it's just friends saying "Why don't you rattle?". Is your mum one of those anti-vaxxer essential oil types? I suggest watching some videos about how much damage people like her do to society, which often results in sick and dying people being scammed.
@@BunnyRabit-yo3lx Thanks for caring enough to comment! It means a lot 🥹
I’ve been to counselling and psychologists with her and without her to try and resolve the issue. My specialist has also been nice enough to bring up how important my medication is every time my mother happens to be nearby. I wish I could say that any of those things had worked, but she is incredibly firm in her beliefs. Regardless of what any doctor says about the importance of my medications, she refers to it as me ‘taking drugs’ 😮💨.
She puts herself on a pedestal because she refuses to take any over the counter medication herself. I don’t think that she particularly considers that I would likely do the same if I had a choice in the matter. Not only that, but prescription medication is not the same as over the counter medications.
I’m so sorry you don’t get the understanding and support you need. My mom doesn’t believe in doctors and looks at me funny every time I go. I always feel like I have to justify myself even though uh, a herniated disc might be a good reason to see a medical professional. But sometimes she looks at me like I just told her I want parrot for dinner. Young people can get sick too, you know. :( you deserve better, and I hope it gets easier for you. I don’t really know what else to say ❤️ I found it gets easier to just be okay with being uncomfortable and looked down on. I think I’m pretty cool, and I’ll do everything I can to take care of myself, with or without support
Your mother is treating you so unfairly. My parents also didn't believe in medication. To this day, any time I am doing better, my mom tends to underestimate the necessity of my medication and thinks that it is something that should be hidden. To some extent, I understand her, because many people do judge us for needing medication. I have a severe case of schizoaffective/bipolar disorder, and I think the misunderstanding is that she doesn't realize that my regular use of the medication is what helps keep me well. She told me, "I don't think of you as ill" even though she's watched me be hospitalized on multiple occasions. I understand that what she was trying to say was that she doesn't define me by my illness, but it still felt invalidating.
Maybe one day I won't need medication anymore, but for now, I take it religiously, because I can't afford to become manic. I have too much to lose. I know that bipolar disorder is something that can improve in your 30s and 40s, but it won't if you aren't properly medicated until then, because severe episodes can damage your brain. I don't romanticize the possibility of going med-free. I just do what works, and you shouldn't feel bad about doing the same and looking after your health. I hope you are able to find some peace amidst everything that you're going through right now.
the constant fear of growing old and having the already debilitating symptoms become unmanageable is so real. every time I am confronted with my parents aging I mourn my own future-- if I had life changing symptoms at 10 years old it's hard to imagine what it will be like at 60, or even 50 or 30. hard things. thank you for talking about the grief that comes along with chronic pain!
i resonate with this so much as an autistic person. the grief of accepting that certain things will always be hard comes up all the time, but i am proud that i am beginning to learn ways to accommodate to myself and help myself cope and i do have hope that will continue to grow. thank you for your honesty and openness ❤️
Your openness has been really helpful for me to not be so hard on myself. "You're not just lazy." --> This!
Don't say "just" lazy.
There is no "just" about it!
@@alicecain4851 I mean, idk about this person, but I know I *am* lazy, sometimes. it's just that I also sometimes can't do things for other reasons.
Despite enough proof that I could win in a court case, the lazy/flaky reputation still lingers
I heard another adhd creator point out once that "If I were being lazy, I'd be having fun, not screaming at myself to get up and do something while I'm doomscrolling on the couch." That really stuck with me and has helped me realize that I've internalized a lot of my parents' disdain for my bad days where I can't do much but watch tiktok and scream internally.
I totally understand.
I have an invisible disability.
Two, actually.
Deaf and asthmatic.
Some days are good,others,not so much
I feel you with the asthma 😔
Asthma is a disability? I have that and I had no idea it’s a disability.
@Breathefreemylove It definitely can be. Now it's not necessarily a disability in that you'll get assistance from the government from it, but depending on the severity it can definitely impact your life. Even just taking some of the medication to manage it can impact your life and health.
@@BreathefreemyloveMost long-term medical conditions have the potential to be disabilities. Asthma can certainly be disabling, so it can be a disability. But it's for you to decide whether yours affects you enough that it's disabling for you personally. :)
@@Breathefreemylovea disability is anything that interferes with activities of daily living.
Thanks for taking the time and energy to put this video out Jess... I have Long Covid -- it has made my Fibro, POTS, and some of my executive functioning struggles from autism worse... actually, it's just been awful - thank you so much for the reminder that I'm not alone - I'm not the only one... and even if I'm not getting "better" - it doesn't mean that only darkness awaits me for the rest of my life. I needed to hear that today... I am grateful for you...
It's pretty sad when you think about how many people are struggling with longcovid but we all still feel alone... I've had it for 2+ years now, and it's tough. I also relate so so much to the things jessica is saying in the video about struggling to decide which things to cut back on and what to push through for... For a time I also really struggled with feeling like a burden to everyone and not being able to 'keep up'. And i'll be honest i ended up in a pretty dark mental place until my therapist prescribed me antidepressents. It's been a lot easier to handle everything now, I'm still spending most of my day in bed, but at least now I'm lying in bed smiling😂
@@therese1806I so feel the point about feeling alone even though there's so many of us (and there will continue to be more), i think it's cause the world has "moved on" and is pretending we as well as COVID doesn't exist anymore 🥴
14 months Long Covid here. It’s hell. POTS, CFS, nerve pain all over. I feel so alone too.
Please look into MCAS. It appears to be the underlying cause of long COVID, and POTS. Treating it can make the rest much better!
@@jenniferw1595You’re not alone! I’ve been disabled with MCAS/EDS/POTS for 12 years. There are SO many of us!
I totally get this idea. I have multiple invisible disabilities, both physical and mental, so I have struggled a lot with existing my whole life. Recently though I've been managing them much better. Interestingly I've noticed that that makes them less invisible. Because instead of trying to appear "normal" I now do what works best for me. And, for example, when you start only communicating via writing for seemingly random periods of time most people think that means you've gotten worse not better. But one of the main skills I've been learning is letting myself be disabled.
Same!
I’m still trying to appear “normal”. People become unspeakably cruel when they realize you are vulnerable. And they stop helping you once they realize that you will *always* need help. It sucks and is exhausting, but it’s how I’m trying to survive.
@@kagitsune Definitely. For me it's all about the balance. I try to take advantage of the situations where I can totally unmask, so I have more energy for the rest of the world.
The worst part of chronic pain for me is the loneliness I feel like right now, when I am desperate for anyone who understands what I'm going through to just hold me
Adhd meds helping with pots symptoms makes sense as they are generally stimulant medications where one of the concerns is that they raise blood pressure and heart rate. Which would combat the drop in blood pressure that is the main issue with pots.
This sounds so promising! I have pots and am going to ask my dr about adhd diagnosis soon. Can i ask, do you know what adhd meds may help with pots? Or all of them?
My blood pressure is low all the time and gets worse when i stand up so I'm hoping adhd meds could help with that. Thank you
Like many in the comments, I’ve also been dealing with chronic issues including fatigue. In my last doctor appointment she finally said she wanted to try the stimulants to see if it would help me recover some semblance of normalcy. Which had me so excited because I have heard from other ppl how much it helped them. Cut to me picking up the prescription to find out she changed her mind and put me on sleeping medicine because “maybe I’m just not getting enough rest.” At this point after this many years I don’t even know how to talk to them anymore because it does in fact appear that they never listen. Sometimes it feels like dealing with doctors is just as challenging as dealing with chronic illnesses.
@@nolaray1062that last sentence pretty much sums it up.
@@anyalazor7978 that was a comment on the fact that she said that her adhd medication also helps with pots. Realistically pretty much all of them except for specifically non-stimulant options are stimulant based. Beyond that its mostly a, I would like adhd meds because of these adhd reasons and then if they ask about concerns with stimulant vs non-stimulant just that you arent worried about stimulant medication.
@@ariellesarinafirestone7823Dealing with doctors is a full time job. And I’m too sick to work.
I was 11yo when my diabetes was diagnosed, 1987. It didn't help that old people were crying that I'll be blind and soon loose my legs. Doctors and nurses were trying to convince me that in ten years diabetes can be cured. Such bulls**t. In reality I've learned to take care of myself and equipment has evolved greatly and made it easier. Having chronic illness is mentally very taxing, 'cos you'll never get vacation from it. Let it be for one day and you'll feel like s**t after it. I'm just trying to say that I understand what you're saying. My diabetes will never go away but I can live with it. Sometimes it's hard but there's always good days too.
As a young chronically ill person this is strangely reassuring. It's not going to get better and that's ok. College had me thinking "the future will be different" etc but I'm OK with it just being like this. I'm in pain and that's ok.
In a way the future IS different - if you learn to cope and handle you illness better than before. Even if your illness is not going anywhere.
I've been hoping I'd get my asthma somehow calm down (which does happen for many people, they just take meds and are mostly ok). Along the years I've had to accept that it won't happen for me. Still, I've also accustomed and adjusted my life, so it's easier. For example in the springtime I'm still complaining, but I also know what I can expect and avoid trying too hard because it won't work anyway, saving me a lot of of struggle.
Same!
everything you've had to say is so relatable. i have an ex-friend that just doesn't understand disabilities and/or invisible illnesses, and she just made me feel like absolute garbage for not being able to do all the things that everyone else can do all of the time. she refused to be understanding of my needs and respectful of my no's, and this has just helped make me feel like less of the "bad" person she wanted to paint me out to be for having to say no and prioritize my health. i hate that either of us have to think about all of these extra things, but i'm glad that you're being honest about your experiences for those that might not understand right off the bat to be able to learn from. thank you 🫂 sending you, Claud, and Rupert so much love! 💜
❤
Honestly, she is an awful friend
I had a friend like that too. Its pretty painful. Happier without her but also very lonely
Yeah, I've been told that I'm "so boring" because my chronic illnesses often prevented me from going out and doing things.
@@Akurokuma What??!! Well, I’d choose a “boring” friend over a rude/mean one! ❤️
I'm not doing very well atm and don't have in person support. It was comforting to hear that others are also fighting their intense battles. Thank you.
❤
At 16:30 i think you made a very good point that "it doesn't get better but we get better at dealing with it"
I think about my chronic illness like "it'll never go away but with practice it will be easier to live with"
This made me cry in such a positive way. The "it isn't necessarily doom and gloom" message is something I really needed to hear. Thank you.
I learned that my migraines were often triggered by missing meals! I started getting horrible vestibular migraines when I tried intermittent fasting to improve my cholesterol. Took forever to make the connection. I still get migraines especially because of the eating habits I got into while trying fasting, but they've improved so much since realizing I really do need at least 3 meals/snacks a day.
I have the same problem! I have other triggers as well but missing meals is a huge one (it causes my gi symptoms to flare too). Cut to me in a group setting getting upset when everyone’s taking forever to decide what to eat or if they want to eat yet and they think I’m just “hangry” and impatient and it’s like no, if I don’t eat soon the rest of today and tomorrow will be shot
I get vestibular migraines too! Mine started by being triggered by viral illness.
I think another trigger or exacerbator is stress, I was employed by what I have come to realize were ableist people (they transfered my very nice boss) and I swear the pressure to predict my migraines with a crystal ball for them and not miss work made them last 3 days, one of which I can hardly walk, even when I took one day off.
My medicine does nothing for them so my doctor reccomended taking magnesium twice a day to try to prevent them instead. After I was fired- and I had a viral illness at the time- I have only had one VM and it was one day. I suppose it is much worse to push through and worry about how you will be treated!
When I'm not being hurried off to work I can focus on resting and making sure I get food into myself and as soon as I can.
Interestingly, similar to Jessica, I probably have CTD and I think I have autonomic dysfunction, but I am having trouble getting diagnosed. I'm not sure if it's the right diagnosis, but my mom was diagnosed with Marfan's syndrome in the 90s, but me and my sister have symptoms and have not been successful in getting a diagnosis. There is so much more research on the effect on the nervous system for EDS, and the research is so much better in the UK, and I appreciate them so much for it. I also have GAD.
I neglected my anxiety med at bedtime last night and I had 5 nightmares in a row. They were all very real like I was actually walking around my house flipping on light switches, checking the windows, but there is an alien in my living room. I had to take it and wait for it to kick in to sleep.
My dad is very resistant to my crusade to get help but last month I fainted waiting for my perscription and he had to wait for me to come to consciousness and he said I turned white, I'm 26. I may have to seek disability instead of working. There is no benefit without diagnosis. I only found resources for EDS AD treatment but there was about 15 medications suggested for it. I don't even know if I have OI or POTS yet. I'm not allowed to drive for 6 months. Very frustratingly, it seems to come and go so my doctor thinks I look okay and I get surprises, as far as dizziness goes, but I have IC and constant issues with my stomach and pelvic pain.
But he insists there is nothing they can do for me because that's what they told my mom.
I'm in process of convincing a clinic to give me an appointment 😡 when I have a referral and next week I get a heart monitor on to see if my heart is why I fainted. Wish me luck I suppose.
I don't know how experienced you guys are in this, but I have had 3 family members who had acute heart problems after being healthy, migraines run in the family, and my uncle snapped his achilles tendon without trauma like it had been cut.
@@evren5642Girl, yes! I get nowhere when I complain about it but in no uncertain terms can I wait to eat when I need to. I will get a migraine, and then I will be on your couch and you will have to take me home, and I don't want to come to yours next time.
I cannot usually hang out with my sister anymore because she only wants to do so spontaneously, she will insist she picks where we eat, which is usually somewhere I cannot eat anything, and she will insist we don't leave the house until 9 or 10 pm when I said I need to eat within an hour at 6/7. Even if I offer to buy coffee and something to eat for the group. It really has strained our relationship that she does not seek to understand, and it really upsets me.
Her bf is sweet but he is not confrontational so he always argues for whatever she wants. She also punishes her friends for standing up to her so they don't. If she were not my sister I would not spend time with her at all.
@@xSwordLilyx have heds UK had to pay diagnosis after years decdes fybromyalgia chronic migraine CFS I s OCD now diagnosed autism ADHD as the causes
What's ctd
Saying no is so very hard for me to do. I don’t want to miss out. I feel lonely. But my body doesn’t cooperate with me often. I feel your pain so much.
❤
me too 💜
Jessica, I've followed you from the very start. Even if I hadn't found you on my own already, the combination of your use of crutches and your aesthetic meant that everyone I've ever met sent me a link to your channel at some point. (I also went mini-viral during the straw debacle....you truly did me a solid on that one.)
I'm halfway through this, and I'm sitting here with tears streaming down my face. I had a horrible terrible appointment yesterday with a neurosurgeon--one of those where their shoes are already pointed toward the door before they're done introducing themselves--and I just so desperately needed this today. I mean, words cannot convey how much I needed this.
I took my daughter and dipped from a really abusive marriage not all that long ago, and it has been orders of magnitude more isolating than disability and chronic illness have ever been. This video was really important for me today, it made me feel like less of an island, and I thought you should know that.
I've been on the receiving end of the weird, parasocial thing, so I try to guard against getting too personal with comments. But I also think that sometimes it's really important on just a basic human level for us to know that we've done a fellow someone a kindness, intentional or not. I think it's good to know that just by sharing your experiences, you made my day a bit easier...when I really needed it.
Thanks, babe. 💜
Became significantly disabled at 58, and crushed to the ground at 60. My home, my life wasn't set up for disability and every week found the can't do list got longer and my world got smaller. Some friends told me I just need to pray it out, have faith, be positive, push through. None were there when I fell... again and wet myself getting up or so weak brush got caught in my hair and napped with it there or choked on oatmeal or dropped the 9th fragile thing in a week or lost my balance trying to sweep up glass before dog walks in it. I never thought I would lose biking, hiking, skiing, travel, writing, doing storytelling in such a short time. Basically am canewalking invisible dead. Oh and my mind that still sees me as productive active nurse dies a bit more each time an 84yo offers physical help or tells me I am too young to be disabled.
:Pray it over" pisses me off so much. People who have the Christpill work for them just have no sympathy to the idea that not everybody gets to be them.
Thank you for your honesty, vulnerability, and realism.
The conversations with older family members/colleagues/etc. about their oncoming health struggles are sometimes a bit frustrating for me. If they say the words, "just wait until you're my age," 😂 oh...but my body already does think it's your age! Jessica, thank you for another wonderful video. I always feel so seen and less alone in this bodily struggle when I watch you. Take care! ❤ I hope the jet lag and fatigue ease up a bit for you very soon.
I had to learn to take a more emphatetic approach with my relatives when they complain about their new old age struggles. Being autistic my go to, very honest but perhaps not as kind, answer was usually "lol I know I've had that my whole life." But I noticed it hurt the feelings of my father - not because he doesn't think my issues are just as important (he's a great father) but because my issues do not make his issues any less real and valid to complain about. So nowdays I try to rather go with "I really know how that feels, you are not alone with that."
But it can be insanely frustrating when someone talks about it only relating to their age and you're there like, dude don't you understand me and people like me also exist? We suffer from first moments on this earth to the last ones. Just have to make the best of it even with that and get some gentle cuddles and pets and care from your loved ones when things are extra hard.
My boyfriend washes my hair when I'm really sick/in a lot of pain etc. And I love him so much for that.
I do appreciate these less scripted videos, especially with you all leaving in the side digressions and forgotten words. These are things I struggle with on my bad days as well and they are things that don't really get shown very often. Your work is so wonderful and appreciated.
I have long Covid and JUST got weird new symptoms (nerve pain and swollen eyelid)-- after FOUR YEARS. I also struggle with food, but more because if I eat just a bit too much, especially sugar (or if I drink alcohol), I get intense cluster headaches and migraines, plus heart palpitations and chest pain. People always think I'm fine because I generally look fine-- but I am NOT. So I stand in solidarity with you!
Oh! my! God! I also got the alcohol-migraine pipeline from long Covid! Haven't had a single drink in a year. A single sip of wine and my head feels like it will explode. I also still suffer extreme fatigue, muscle pains and very regular migraines from the long Covid (got it 3 years ago). Glad to not be alone but also sorry about it.
@@katlantas5674 I have begun to be able to have a couple sips of wine about once a month, but that's after four years of this, and more than that and it's a world of pain, so I totally hear you. Also, we're far from alone-- I'm in several long Covid groups and many have talked about similar issues.
I still get random intolerance to smells I haven't had since covid... and I'm not planning to drink at all but now I'm worried about that haha!
I've gotten "get well soon!" wishes from the same people who refuse to mask and take other precautions which are really the only way for it not to get worse.
I have a chronic mental illness disrupting my life since I was 13.
Whenever somebody tells me: "You look fine to me." I answer: "Yes, because on the days when I'm not fine, you don't get to see me."
Currently resting after caring for a mum with osteomyelitis - she's just been in hospital for 4 days and had to have a toe lopped off. We are both trying to balance our disabilities and our need for rest with the ever present financial and social pressures of being disabled and ill. I am glad to have this video for company.
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This is so true.
Thank you for sharing.
❤ *sending a load of energy*
AawaawaààààaAÀ@@alicecain4851
AawaawaààààaAÀ@@alicecain4851
I can't watch it rn, but 1min in and oh boy how I felt that.
I spent years being medically ignored and with wrong diagnoses, I'm only getting the right diagnoses now (and some still being looked at) and I'm tired of doctors and of people telling me I'll be cured and I'll get better.
Thank you. I was emotionally disregulated when I started watching your video and now after finishing it I feel at peace again.
I keep tricking myself into acting like a healthy person 😅 Obviously I always pay the price, maybe one day I'll learn.
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Same
We get very good at faking wellness…
It might help to think of yourself as like a pet. We spend so much time, energy and money creating a safe and healthy habitat for our animals or even our pot plants but we often don't put a lot of thought into our own physical needs. We need healthy food, sunlight and clean air as much as they do. We need appropriate amounts of exercise, sleep and rest. We're mammals. We're animals. We're living things. We need nurturing too, even if we have to do it ourselves. I am working on giving myself as much care and attention as I do my dogs. I'm taking my vitamins, on a diet and spend a few minutes sitting in my massage chair by my SAD lamp every morning before work.
@@Draggonny This isn't helpful. I am not a pet, nor do I need such patronizing advice in response to a joke. I've lived with a serious neurological disease for a decade, I know how to take care of myself, and have a better quality of life than most with my disease. Some of that is luck, some of it is work. I put immense effort into managing my illness. That taking a night off to just be free once in a while and making a silly comment about it warrants being spoken to like a dunce who just needs to feed and water themselves is pretty silly.
I can't stop crying. You said all the things I'm feeling and made me feel safe and kind with myself. I'm 21 and been diagnosed since I was 10 and I've struggled with it the entire time.
I have long covid and it is sometimes hard to face the fact I don't know when and/or if I'll ever get better. This really genuinely helped me understand that it's okay either way, and even if I don't get much better what awaits me can still be positive. So thank for this, and keep up the good work!
Felt. + the constant fear of catching it again and it getting worse while the world goes on pretending its over 🙃
I love your resting videos, they’re so vulnerable. Today I am watching while having my own rest day.
Thank you for this. My mom and many doctors were always convinced I’d be healed somehow. I never thought I’d live until 30 so now that I’m in my 40s and still alive and still managing with this illness it’s a wonderfully confusing time.
Thank you for this. It was a relief to hear someone else say that "yes, I could push myself to do this big thing that would be really fun or meaningful... but I have to accept I couldn't. That makes me unhappy, but it's what I have to do." The idea that it's okay to simultaneously turn down big things that could be meaningful (but draining) without punishment or scolding attached is a new idea for me. It's hard not to be an overachiever as a chronically ill person- we're judged if we aren't!
I've been trying to learn to see and appreciate those "little drops of happiness" you mentioned and not feel guilty for pursuing them, instead of saving my energy to chase bigger things constantly.
While unchecked consumerism isn't a good thing, sometimes we just need a new lip gloss or an hour to watch tv to get us through the week. We aren't lazy or somehow not "appreciating how lucky we are" when we seek out small drops of happiness when we can afford them.
I believe you mentioned in the past that you kept a journal of how you felt that day without judgement. That you were brutally realistic about what you could do that day, and it was frustrating and upsetting to acknowledge those limits and recognize that you could not push yourself. However, you also mentioned that the process of learning your energy limits unexpectedly brought you more energy in the long run because you weren't pushing yourself so hard.
I'm hoping allowing small amounts of happiness into my life where I can will have a similar effect. Maybe I'll have more space to work toward those big moments of happiness... and appreciate them more when I get there.
Will I look back at earning a new in-game cosmetic in 50 years and say "ah yes, those pixels for my avatar brought me limitless joy, it was a meaningful achievement!" No. I may not remember it at all.
But I think I will say that I am grateful I allowed myself to be happier in the moment, instead of pushing myself to find a more "meaningful" moment of joy every second of every day.
Years spent in misery to achieve one brief moment of joy are still years of misery. Nothing can bring those years back to make them less miserable.
Allow yourself small joys while you can. You deserve happiness now and later. You should have both.
So many good points ❤️ the related fun paradox is when someone asks "why can't you do this thing? You seem to be managing things so well!" And the answer is "making these decisions to not overextend myself is a crucial part of managing my health; you are witnessing the results of my progress in learning how to take care of myself!"
This is so relatable and I needed to hear it. My mom is included in some of the people that tell me oh you're getting so much better and every time I have to remind her no I'm just better at dealing with it and better at hiding it from everyone. She gets upset but I think it's good to keep an honest understanding about what my body is and what it will be in the future.
Been diagnosed for only 3 years now. Every time I start to think "you're starting to manage, good for you" something new hits and the grief of diagnoses starts again. It helps to think that at some point it may plateau and I'll have figured all the quirks out. Thank you for being so positive even when you're on a bad day. Today has not been a good day for me, your video helped. A lot.
My family definitely doesnt understand that I'm not going to get better. It makes me start to feel like I'm just not trying hard enough, or at least they must think that about me. The line between acceptance and complacency is very fuzzy.
Thank you for being here for us Jessica ❤
Thanks so much for videos like this one. I'm having a really rough day with my chronic illness and it genuinely helps to feel the solidarity.
I really needed this video today. You've been such a comforting person in my life through your videos since I was a teenager in high school. I was diagnosed today with Lupus and I've had my diagnosis of Hashimoto's Disease for a little over a year now - both of these things I've had in my life for years before being diagnosed. You've helped me develop a more neutral/accepting personality towards these things and helped me feel less alone. You're amazing, Jessie!
My chronic illnesses have become worse with age. I used to think I'd beaten it every time it was in remission, but it was actually recurring with a pattern. 12 years ago I realized I had to accept that it wasn't going to get better for good. I went back to my life over a dozen times, then my body was no longer capable of recovering.
Nobody told me about pacing and other skills until I was debilitated and it was too late for them to be meaningful. I mostly had to claw my way back myself. People always had the same expectations of me as anyone else. Now that my chronic illnesses are severe, they still don't have a clue.
My loved ones know that I'm living a nightmare with this in the US. It's true, but only makes me feel bad. So many people tugging on me in different directions now that I'm end of life: die already, live forever, do what I want you to do. They all conflict with each other, myself, and my doctors recommendations. It sux.
People - perhaps especially family - often can't reconcile achievement and disability. I've had huge problems with family not being able to get their heads round both parts of me. It was especially hurtful when I had the biggest event of my career and my parent showed little interest in attending. I feel like people are only open to haring the stuff that reinforces their existing view of me as A Poor Disabled Person, yet they also struggle to take on board the specifics of that when they contradict certain family narratives. Anyway, thank you for being so real with us in this video; this is all stuff that I think many of us really struggle with as we age and our lives change and yet our disabilities are always still there needing accommodated.
I have EDS, and POTS and CFS as well. I'm turning 41 this year so I'm only slightly ahead of you in my life journey. It's been hard, specially the lack of true rest and the waking up to feeling stiff and in pain, but also going to bed aching and tired. I totally sympathize with the 'waiting for the old age issues'... my hands have been getting more and more sore and achey lately specially when the weather is changing, the joints stiff and inflamed. I find that holding things cramps them, and I cannot open jars and such. I know it won't get better, and I think it's hard to live with that knowledge. I do appreciate my friends and specially my partner in that regard. They do what they can and do not judge me for being 'lazy' like my family did. You learn to find people who understand you, who accept your limitations and are willing to work around them.
Ugh I completely relate to "only passing on the bad" and completely glossing over accomplishments. SO frustrating. You're an absolute superstar Jessica, thank you for sharing and making us feel seen and not alone! 💜
I found myself describing it to my mother recently as not being healthier but being sick smarter.
The best part of chronic illness is the people I've found who understand. They are delightful human beings - kind, thoughtful, resilient, understanding, and accepting above all else. We take care of each other and we protect each other, and we love each other unconditionally. Thank you for showing up and sharing so vulnerably for all of us Jessica, you are an absolute gem ❤
I appreciate how open you are when it comes with dealing with your chronic illness and making things not seem all rainbows and butterflies. I personally have a hidden disorder and people have such a hard time understanding that not all bodies function "normally". We just learn how to work with it and what it takes to make it be ok.
I really relate to what you were saying regarding having to choose to miss out sometimes on things with Rupert. I have two kids and yeah, sometimes I have to choose to sit something out, usually to conserve energy or recuperate for something else. I rarely do pool time with my kids on vacation because usually I’m resting from our earlier activities so I have energy for later activities. And it’s really hard. But I’ve seen my kids understand and enjoy the time with daddy and then enjoy having me back when I’m able. And sometimes, I do push myself even though I know I’ll pay for it later.
I know what you mean about the time with your kids. I used to feel horribly guilty about missing out on time with my two children, but I now realise that if I accept the help that is sometimes available to me, then we all enjoy our time together more and I don’t completely exhaust myself and also become more ill.
@@HS-pw5lf yes! I definitely had a lot of mom guilt and it’s taken time to adjust how I view things. It’s nice for my kids to get some time with just daddy and I think it’s better to work on quality over quantity when it comes to the things I do with the kids. If I’m exhausted and in pain, I have less patience with them and I don’t enjoy my time as much as if I do less but can have a better, more enjoyable time. It’s not easy to navigate these things though and I know we’re doing our best.
Missing out of experiencing something through your child is hard. Teaching a child to listen to their bodies and that it is okay to say no is so powerful. I am 38 and still learning this.
Seeing a child learn that is powerful but it's still great to see my adult friends get that agency and perspective
I wish everyone would watch this and would truly understand it. Thank you for saying it!
Just recently diagnosed w/ LONG COVID, hEDS, POTS, ME/CFS, etc... and I have been losing it when people say, "it's such good news! Now you have a diagnosis and will get better." This video is the biggest morale boost I did not know I needed. Blood sugar issues : BIG TIME.
You asked and now shall receive my current blood sugar related traumas. I probably need to get on a regimented diet to help with this but I find I really struggle to eat before like 11am no matter what I do and for the last 6 month or so this has become a major problem for me. So essentially I have to stop eating at 8pm to take my before bed medicines (woo chronic illness life?) but I can’t make myself eat until after 11 because it makes me feel physically ill. So going over 12 hours without eating makes me have hypoglycemia and then I get a migraine no matter what. It doesn’t help that I’m almost 30 and finishing out a masters program and teaching so my schedule is never really set. Also if I try to explain any of this to anyone I look like a whiny freak because I “don’t look” like I have problems.
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Thank you Jessica for this video. I discovered your channel today and it's wonderful! Your content really does me a lot of good. I was diagnosed with an incurable chronic disease last May and I have not yet managed to develop a strategy to better manage my severe pain and fatigue, nor to use my "spoons" well. But your videos encourage me to believe that I will succeed at some point! You are inspiring and radiant, and I wish you the best - before and after your 60th birthday 🙂
I have multiple sclerosis which is a chronic disease that actually worsens over time. Thank you for this presentation on chronic illnesses. People often do not understand issues like fatigue. If I push myself to participate in an outing, then I have to spend the next day or two recovering. We call that paying the MS tax. I appreciate you addressing some of our common issues so very much.
“The MS tax” ❤❤
Same here 😢 wishing you the best!!!
19:53 this is the thing I struggle most with. I have hEDS, POTS, migraines, IBS, insomnia, and several other conditions and one of my parents is a real spoon-drainer but I still love them and I can’t really cut them out of my life. All I can do is set firmer boundaries over and over while they chip away at said boundaries over and over. Relationships are so complicated and I wish it was as easy as “this person drains me all the time, no more seeing them!”
I had a terrible migraine yesterday and am watching from you from bed. Fibro, POTS, MCAS, IBS... all the things. Eating can be so hard. Smoothies. When I am exhausted and not hungry but know I will crash if I don't put calories and the right calories into my body I can sip on a smoothie over an hour. They were also great when my nibbling was a toddler for both of us. You are doing such an incredible job. Thank you for sharing on a really vulnerable day. The struggle is real and can feel impossible some days but there's also still happiness and joy. Thank you for this video. Thank you for being you. How you feel is Valid and relatable. Side note, I've been joking since I was a teenager about what a great 80 year old I'm going to be. I've got it down now so I'm going to rock it later. Sending love, rest and 🥄🥄🥄
You make perfect sense about a very important issue. Your comments help so many. I realize more about INVISIBLE illnesses, too. You are a star!
As i aged (and im still quite young, early twenties!!) my lifelong migraines went from lasting 3 days at a time to 3 weeks at a time. I had to drop out of university to deal with them, only to realize it was not, in fact, going to go away. A year later I re-entered university and absolutely failed my courses. Now I am doing very well in my courses, but my migraines have not changed- I just got better at managing myself and my work. I often feel frustrated and wonder when I will get better… anyways, thank you for your videos! They bring me so much joy and hope and a sense of understanding. ❤
My favourite type of video, the talk that always makes me feel less alone. Thank you so much ❤️
I also have EDS, POTS, MCAS, and some other undiagnosed stuff because I'm just *too* exhausted to handle more doctor visits right now. Your videos, especially this one, are so validating. I'm working on accepting my limits and being kinder to myself and my body. You've helped me better handle it all and explain it to people soooo much. Wishing you more "good" days 💙
I remember being in an uber and the driver had just loaded my wheelchair into the car. He came in, sat down, and said "Don't get old, your body starts falling apart." And I just stared at him in disbelief until he realized what he said and let out a little "Oh". I loved this video. I've been diagnosed for about 3 years now and I think I'm just starting to accept that this is forever, just a little bit. I'm hopeful for the treatments my new doctors are throwing at me. But mostly I'm just learning how to make bigger changes in my life to make things more accessible instead of waiting to get better - like a car with a ramp or shelves that pull down, not fighting my body to not use my wheelchair because I think I can today. Just use the mobility aid and save your spoons for more important things than proving you don't need the assistance. Watching your videos has helped me accept a very sudden change in my health from well to unwell. So thank you.
You reminded me of this person that said somewhere: "At this point the only consistent thing about me are my inconsistencies." and oh my goodness, this is so relatable to so many people. Me being one of them as well.
I only wish it was easier to diagnose chronic fatigue. Some people have to live with it while being ignored by a lot of doctors. And there's no way to get the treatment for it. As you mentioned: someone has to learn to manage it better over time. It can steal the joy out of life, unfortunately. Greetings and love from Poland.
I appreciate these videos so much. I have depression, anxiety, adhd, fibromyalgia, hypermobility and recent I've had to add polycistic ovary syndrome to that list. I'm glad someone has the courage to use their platform to advocate and talk about their disabilities and to say what we all go through as disabled people: it doesn't get better, we just find ways make it work.
Thank you so much for speaking your truth, Jessica.
Has anyone looked into EDS? I have hypermobile type and I see myself in you, lol.
I deeply appreciate these videos, Jessica. Seeing someone online speak in the way my friends and I do (adhd) is so refreshing and honestly keeps me more engaged. I'm also currently trying to figure out how to approach my doctors with the "I think I might have chronic fatigue" thing, so it's just reassuring to hear you talk about anything to do with it.
man i sympathize with that feeling of having the opportunity to do something for work that seems cool and not being able to do it. there is a small greenhouse/farm plot nearby where i live that is hiring. they sell their crops very cheap for the needy in our city. it sounded so cool, but obviously being a farm, it is very physical. i have worked physical jobs for the last few years and it has done terrible damage, and now i cant work anymore. but i wanted so bad to work at that small farm, and i cried realizing i couldnt. my family just thinks im lazy, but i genuinely cannot find a job i could do without doing more permanent damage. they dont even know how bad i want to work a job with a tangible, physical effect on the world around me, no matter how "indignant". 😢
That is so true! Thanks for sharing your thoughts and feelings with us! It helped me a lot when I started to accept that my chronic pain will probably never totally go away and that's fine. Other people, even doctors, are often quite shocked when I tell them that I will probably never be "healed".
Thank you. I didn't realize how much I needed someone to tell me that it's okay if I *don't* get better until I watched this.
I have rewritten the comment quite a few times, as I have had difficulty finding the words to fully explain it. I've suffered from depression for several years now, and honestly, it's quite debilitating. its difficult just getting out of bed in the morning sometimes, and if I do I find I just sort of float on those dark days, aimlessly doing nothing. Then I have the good days, where I can do alot, and I feel very happy that I can. Hearing you talk about it not getting better, but it doesn't mean everything is so dark, is actually very uplifting. I feel like I might even be able to reframe some of these mental roadblocks in a way where I can find some peace in both the dark and light days. I didn't really understand what people meant when they called someone a "light", but this is the closest I've understood it. Jessica, you are a bright light. I'm really happy I've found your content, and its brought me a great deal of solace. And for that, I thank you.
It's nice to hear someone else say that they view their body as a separate entity that they need to take care of. Thank you for this relatable content, ma'am!
i know it's not exactly the same but i feel this so miuch with my anxiety, jessica. after almost 10 years of diagnosis it's now not 'when will i be better?'' but accepting that these things eb and flow and progress isnj't linear. these things don't go, and they never stop sucking, just sometimes you're better able to deal with them.
Thank you. I'm watching this while waiting to get bloodwork done and knowing that the required fasting is giving me a migraine. And it helps me feel better about the fact that I might not be able to eat in time to keep it from being a really bad one. This is supposed to help me, but OOF is it messing me up in the short term. But it's okay, if I have to use my sick time, I can. I have enough. And I even have the official disability paperwork now.
I can relate to this. I've got a number of chronic conditions post covid in early 2020, and it has been almost impossible to parent as I would like, let alone any hope of working. I think it's impressive what you do manage to do.
Thanks to you and your channel I have been able to become diagnosed with hEDS and some other diagnoses that have been long awaited. I am on my path to a better life and learning to take care of and learn about my body and myself in new ways and making sure I appreciate things more.
Jessica, as a 38 year old mom with chronic illness myself, this was really meaningful to me. Thank you. You're not alone. I feel so much of what you're going through.
Such a revelation to hear you say (paraphrasing) "in 3 months I'll have completely forgotten I didn't go to this thing, but if I go I'll remember forever how miserable it was." That is SO REAL. FOMO used to constantly get me into theoretically fun situations that were in reality miserable cuz I didn't have the spoons. So friggin glad to be older and wiser.
Yes Jessica, people in general just don't seem to get it that a percentage of us are born with a chronic illness that never gets better (even though somewhere down deep we hope that it will). But life goes on and we learn to treat ourselves better, and slowly learn the triggers that magnify our pain and how to hopefully negate those triggers. Life goes on and I am approaching 70 so I've have already won in my eyes. Hope you continue to smile in the face of a life - dramatic and continue to win your body wars.
I got diagnosed with fibromyalgia at 17, after being bed ridden for a year, during which I was diagnosed with Mixed Anxiety Depressive Disorder. I was then diagnosed with hEDS, POTS, scoliosis/lordosis/kyphosis, and autism. I've also had autoimmune hypothyroidism since I was 7.
I'm in my second year of college, and this hits quite hard. It's not that I'm getting better, I'm just taking the right medicine now, and doing my exercises, eating the right foods, etc, and generally working with my body instead of against it. I don't really /feel/ better, I'm just managing my body and illnesses much better.
Much love to you. I love your honesty and openess. I had open heart surgery last year to replace a valve and then a stroke a few months later. I'm only 28. Even though I'm over 6 months out from these, I'm still constantly struggling with chronic fatigue. It's been rough ngl. Some days are better than others. Caffeine takes the edge off sometimes but overall its a constant battle. Along with having ptsd its just a lot. People keep asking how im doing and its hard to respond. Technically im doing fine but also really not because if the fatigue and ptsd. Wishing you all the best from the US ❤
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Lots of love to you ❤❤ I've had a valve repaired at 28 as well, it felt very weird going through that so young. All the patients were elderly people and nurses and doctors kept mentioning how young I was... Two years later things are much better fatigue wise, as well as mentally even though it's not a smooth linear thing. I wish you all the best. Ohs is a very rough thing to go through (I had minimal surgery and man did it hurt).
So relatable! Even people who've previously understood 'I'm not just X, it's legit' seem to periodically forget & re-remember.
My natural inclination is toward eternal optimism and still get surprised 13+years later that I'm not 'back to normal' which, honestly, was often ill even before the damaging event in '11. Still my brain wants to believe I could, one day, run a marathon, or heck just run for fun. Meanwhile, back in reality, I rarely go anywhere & usually it's a doctor, I've not driven in over a year, and some days it's all I can do to get myself to the bathroom 3x in 24hrs. Life often seems to be a dichotomy for me.
Do you ever run into doctors who don't get your condition due to you being better at managing your body?
Wow I feel very perceived right now. Thank you so much for sharing openly. It makes a difference to know we are not alone in our experiences.
I always seem to be having a low day when you decide to post one of these types of videos and it helps me. 🧡 Thanks Jessica
Chronically ill and suffering the flu 2 days after returning from six-weeks of caring for my father who broke a hip while fighting cancer and numerous neurological conditions. Much needed today. Thank you❤❤❤❤❤❤
Thank you so much for posting these. It really helped me not feel so alone when I was struggling undiagnosed. Seeing someone else that I could relate to helped me realise that I needed to pursue a diagnosis, which has been life changing for me and no doubt many others! These videos are so relatable and validating, and I'm so thankful for your willingness to be open and vulnerable with us ❤ ❤❤
Thank you Jessica, I super needed to here this today ❤❤❤ the stupid nonsensical guilt I feel for having a chronic illness that will never get better is really hard and all encompassing sometimes ❤ it is so disheartening and upsetting when well meaning friends and family make comments like “oh but you’re doing so well now! You’re so much better!” Like no every single day is a struggle I am just trying so hard to fit in and do the most I possibly can!! 😭😭😭
I had a really hard time with my chronic illness so thank you❤
I feel you, I’m currently trying to recover from an overspend of spoons two weeks ago. Thanks for sharing ❤
I like when you just talk and be open about things. I learn a lot from these videos and to consider different view points that I may not of considered in the past.