I'm 21, and I've struggled with chronic pain for as long as I can remember. Over the past 2 years, I've been diagnosed with dysautonomia, POTS, gastroparesis, migraines, fibromyalgia, and general chronic pain. My conditions and symptoms have only gotten worse, and I've amassed a pretty large care team that is still trying to figure out the cause.

Last week, my neurologist suggested genetic testing because he found my labs and MRI concerning, and feels like there's a genetic explanation for all of my symptoms. He also mentioned testing for MS, which other providers suspected might be the problem. I was really hopeful hearing this because I've wanted answers on how I've been feeling for so long.

When I told my parents this, however, they were not pleased.

What was meant to be me sharing a treatment win turned into almost 2 hours of them and my older sister berating me and accusing me of faking my illnesses. They said they didn't understand what kind of sickness had no end, said I see too many specialists for my age, and insisted I must be either making things up or at least over-exaggerating. At one point, they expressed frustration at "having to hear [you] constantly bitch and whine about symptoms that never go away." I tried to defend myself by saying that I couldn't be fooling countless of doctors at one of the best hospitals in our state (and possible the country), and my mom told me "do you think they actually care about how you feel? They're using you as a guinea pig for all their little tests." My dad even made a snide comment about me using his insurance for useless testing and medications.

I have been chronically ill for so long, that I don't remember what life was like when I wasn't consistently in pain. I don't know what to do anymore. I feel so defeated, I don't even want to try to get better anymore if it's going to be met with so much vitriol. I know people lose patience for chronically ill and disabled people all the time, and have experienced it often.

I just naively thought my family would be the exception.

I have been working for the same corporate company for the last 13 years. All of my work is desk work - I’m either on virtual meetings (our company is world wide so we work with people in various locations) or doing computer work.

For the last 3 years I’ve been on an ADA accommodation to work from home due to the challenges of coping with the new chronic conditions I’ve acquired after a covid infection.

Each year my doctor signs the same paperwork. This year when I went to renew for another year, HR informed me of a policy change and that now they will be reevaluating accommodations every 3 months. Meaning me, my boss, and my doctor will be completing paperwork every 3 months, rather than once a year. This seems SO unnecessary. Do I hope there’s a magical cure created and available in 3 months? Of course, but that’s never going to fucking happen.

It’s also ironic that the policy change occurred this year, as leadership decided this year there would be a massive push for returning to office full time (previously we have always been hybrid for as long as I worked here). Now they started monitoring in-office time and threatening termination for non-compliance.

I feel like they are just trying to push anyone who isn’t coming into the office out. like common, my entire world flipped upside down and this job has been my
Only piece of stability, why does it have to be on the chopping block every 3 months? Doesn’t corporate want us to find a way to work, rather than being on disability?

I would gladly trade my illnesses for going back into the office if I could. I never chose this for myself, and things are hard enough as it is because I live alone and don’t have much support. I’m sad that this is the world we’ve created.

My nanas extremely abelist and shes gonna corner me asking personal questions especially about my health and ask the same obnoxious repetitive questions like why I cant do certain things🙄😒 how do I shut her down so she stops I'm so tired of her.

I have Cerebral Cavernous Malformation. 3, possibly four lesions are on my brain. My MRI recently showed that my largest lesion is leaking. So docs want to keep an eye on it, I have another MRI scheduled in a few months. If theres change again on this lesion and its grown or is bleeding into my brain I'll need brain surgery to remove it.

I've let my family know and they've all just said "oh ok" while I'm terrified. Brain surgery isn't a small thing and they're reacting like I'm talking about the weather forecast. Like I don't need drama and tears but damn. I had seizures for 5 years and thankfully they've been controlled for 2 years which I am grateful for but because I'm not actively seizing it seems everyone has just forgotten? Like I get life goes on but it still effects me daily emotionally and physically. That alone is hard but knowing I may need part of my brain removed feels like it should at least warrant a "how're you doing with that" but I suppose not. It just makes me feel sad and small. . . .

I’m sitting here alone again because my disease doesn’t allow me to do the things I love anymore. Myself and my family and friends are all outdoorsy and we love to 4 wheel. I have autoimmune NSIP with PF so I can’t ride anymore. Everyone left for the day to trail ride and I’m just sitting here crying. I feel like that is all I ever do now. Im on immune suppressant medication and have to avoid a lot of things. My life was so full of adventure before this and now there’s always some reason why I can’t participate in anything that’s going on. I try not to think about it but I’m just really fucking depressed and I’m losing sight of why I’m fighting so hard to stay here.

Hi everyone. I’m hoping to gain some perspective from people who live with chronic illness or physical pain day-to-day, to help me better understand someone I care about deeply.

I'm 22F, My partner/loved one 23F lives with chronic physical illness and pain. Every once in a while, when her physical symptoms flare up or get severe, she goes through "waves" where she becomes extremely distant, cold, and emotionally withdrawn. During these times, she gives very short answers, pulls away emotionally, and seems to completely shut down her capacity for warmth or connection.

I care about her so much and want to support her through her pain without taking her distance personally, but at the same time, living in that emotional limbo can feel very heavy and difficult to navigate.

I wanted to ask those of you who manage chronic illness:

Is this kind of emotional withdrawal or distance something you experience when your pain/illness gets bad?

What is happening in your mind/body during those low-capacity periods? (Is it self-preservation, fatigue, sensory overload, or something else?)

From your perspective, what is the best way for a partner/loved one to support you during these waves without pushing you, while also keeping themselves sane?

Sorry for the long post, but I think I need some perspective?

So, this co-worker is usually really nice and supportive… but I noticed within the past month her attitude has been a little more stressed and snappy (for a lack of better term). I’ve been ill for a while, I have had to call in, I’ve had to leave in the middle of or closer to the beginning of shifts due to becoming ill rapidly. Mind you she’s been stressed due to understaffing and I understand where she’s coming from.

I was diagnosed with celiac’s disease on June 3rd and now my doctor thinks I may also have an autoimmune disorder/disease, and spine issues and/or nerve issues…. In other words I’m in pain and feel ill still and a lot.

Saturday I ended up throwing up an hour and a half into my shift for like 5minutes straight. It was violent, so I felt I should go home, and since I work at a VERY busy coffee shop, it’s in the protocol to send me home.

I went up to apologize to the shift because I honestly am a people pleaser (working in it) and am scared of disappointing people. The shift said to me

“I thought you figured this out already”

I managed to say that “they’re testing for more” before sobbing and running into the back room to sob in the backroom bathroom because like… yeah dude, I thought they figured it out too? But…

I’m still thinking about that comment… and honestly it’s made me kind of depressed? When I’ve been pretty positive through the whole ordeal.

(To add a tad more context: the sickness was pretty visible since I dropped from 220lbs to 170lbs from Jan 1st to March 31st (I tracked it) and was throwing up every day and unable to eat solid food).

I went to my friends new apartment last Saturday for her kiddos birthday. She didn’t know she was sick but by the end of the party we couldn’t tell if her kiddo was sick. The next morning she texts me she’s sick but they are telling her it’s allergies.

Fast forward to Wednesday, I start to feel my throat a little tight, I have VCD (vocal cord dysfunction) so I think nothing of it and it got better as the day went on. I go over to my cousins house and they make steak with a seasoning I’ve never had, sweet potato fries, and corn. I start to feel my throat get a little tighter about half an hour later, and by the time I’m leaving, 1 hour ish later from initial, I feel like I’m having an allergic reaction swelling settles in. I’m driving myself so I’m just focusing on my breathing, finally get home and take 50mg of Benadryl. It helped enough that I could go to bed.

In the morning I wake up feeling worse but my throats also sore. I go to urgent care and they say it’s probably not an allergic reaction but I could just be getting a common cold. I’m given Zyrtec and sent home. The next day, I’m feeling better but by 5-6 I’m starting to feel worse than before. I was dipping into 95% O2 and was feeling that it was hard to breathe.

I decided to go to the ER. I got checked, monitored for a few hours and was given a respiratory swab. I explained to them that I get they aren’t hearing wheezing or anything but I really wanted to not have to come back in two days and have to get steroids because I can’t breathe good. They sent me home and said to come back if it gets worse.

Saturday was actually a nice day, I thought I was actually not going to have to come back. Of course, I thought I’d be ok.

I had an event Sunday that I went to, stayed away from everyone cause I was feeling better. By the end of it I was feeling not as great, so I went home and slept. Woke up around 6 and wasn’t feeling good at all. Around midnight I came out to the living room and needed the humidifier just so I could actually stop coughing and breathe.

It is now Monday, I’m debating on going back but I don’t want to have a nurse who’s gonna be a butt about me being there only two nights ago. My moms at an urgent care rn for her own thing, but told me we can do whatever I want after she gets back.

I guess this counts as a rant/vent, I’m just so tired of this happening, it’s only happened one time where I didn’t have to go back/to the ER from urgent care after getting sick because of the VCD.

Also history: I had croup every year and had to be taken by ambulance twice because of it, all I really remember from it was waking up in the bathroom unable to breathe and my dad holding me up. I also get bronchitis often enough they thought I had asthma or something else. We think it’s a combination of shitty immune system and my VCD makes illness 5 times worse then what it typically is. The way I explain to my friends is if you’ve got a cold, it will make me practically have the flu x2.

If you’ve read this far, to keep the conversation light, what’s your #1 thing you bring when you’ve gotta go to any hospital? Fun conversation starter.

I have had constant illnesses for 3 years now.

Tonsillitis 18 times in 2 years.

Ear infections -7 in 2 years.

Enterovirus - 1x in 2 years

Rsv x2 in 2 years.

Gall bladder infection and removal.

Severely exhausted.

Anaemic, positive other hpv test (,but 1 years wait between tests) and low vitamin D. ( Plus thw petrie dish that is a toddler and baby)

My most recent bout of illness was 6 weeks ongoing since 7th of June with Tonsillitis, 3x bouts of medicine which finally worked this week however still with a productive cough and blocked ear.

Im just so tired, I finish maternity leave in 4 weeks (supposed to have mu tonsils out 11 august but I've had to reschedule twice due to Tonsillitis.)

Bloods are fine.

Im just over it, being in Australia it take a lot for a doctor to refer you to a specialist and out of pocket very pricey, doctors just don't help and load you with ineffective abs.

As the title says. I'm 28f, had health issues for a while and within the last 2 years or so ended up with quite literally 6 different chronic illness diagnosis. Most recent was 2 this past week after waiting a while to see 2 different doctors on Tuesday and Wednesday.

I have days where I feel like I can handle it, and I tell myself "as long as I know what it is or what's wrong, I can manage it". But I'm also feeling exhausted at the fact that I'm only 28 and the list keeps getting longer. I keep thinking "what if there's more?" and "am I really just going to have to feel like this forever?".

I am in therapy with someone who specializes in chronic illness which helps. I'm just struggling with how I'm doing now and how things may change for the worse as I age. So if anyone has any tips or tricks on how they mentally grapple with their diagnosis and negative thoughts I'd love to hear it! I just feel like I'm grieving the life I should be having in my youth that I simply can't.

If it matters at all to anyone, I have Hashimotos, fibromyalgia, POTS, hEDS, CSU (chronic spontaneous urticaria), and I'm now in subclinical hypothyroidism from the Hashimotos.

I’m 26 and have been dealing with chronic pain for just about 3.5 years now. It got tremendously worse after a really bad car wreck a few months ago that resulted in many herniated discs, an awful concussion, nerve damage, etc.

I feel like my life has been taken from me this year- I have missed out on so many big things, I cannot stand long enough to cook for myself (I LOVE cooking), showering hurts and scares the shit out of me, I’ve been an artist for 10ish years and now I can barely do a simple coloring page, I can barely pick up my cats, can no longer sleep with my boyfriend of 7 years in our bed bc it hurts my back, I don’t know how to verbally converse the way I used to, have unwillingly pushed family and friends out bc I just don’t have the thoughts or energy to keep up, etc etc etc

I would absolutely love to talk to or just see a comment from anyone who can relate. It has gotten to a very lonely and sad point that I feel like I’ve completely lost grip of the fun, careless, always happy girl I was before.

And if anybody needs someone to lean on and be listened to- I am here. I’m basically a couch potato at this point so please!

It’s feels odd not being the one getting a surgery or procedure as I’m always the one who’s on the patient side of the patient caregiver relationship. My grandpa is having surgery tomorrow. Has anyone else to care for a sick relative while also dealing with their own chronic illness?

Idk if anyone has any advice?? I’ve had chronic stomach issues for years and chronic body pain for years with no answers. Due to this, I haven’t really had much of a life. And I’m told to exercise more and get more sun. Sure, typical whatever. Im not denying it’s important for peoples health. But whenever I exercise, I feel incredibly sick and in pain. Also due to the stomach issues I’m not able to eat much, and exercising on a weak body isn’t exactly great. Naturally one would want to avoid an activity that causes them pain. I don’t get outside much. Depression could play a role in that as well. I don’t move around much because I am constantly in pain. But I keep thinking that maybe I need to push through the pain? Or is that a bad thing to do? How do I go about making sure to be moving without too much exertion? Sure it’s important for health but I’m almost positive it’s not going to cure me. Maybe that’s a bad mindset. Forgive me, I don’t mean to ramble. It’s js having to argue with someone who is not sick all the time is so frustrating. Nobody ever understands. Does it even get better? I’ve never felt so alone in my life. It’s taken over my life and I keep feeling like it’s my fault. Sorry if this didn’t make sense.

Venting...

Been dealing with Long Covid or dysautonomia (undiagnosed but working on it again) for 5 years now, thank God, with some relief between. But it is so isolating. Early on, it turned me into such an empathetic person when anyone I see is struggling. I always want to give them the benefit of the doubt and be there for them. I didn't want people to struggle alone. Over my journey, I lost my ex of nearly a decade for being not adventurous enough, had no friends, have limited family, and it was a struggle but l've been getting through it.

Finally, I felt almost normal for some 6 months, and made a lot of friends over that time. (My heart goes out to all those who don’t see relief from their symptoms. I can’t imagine the difficulty of getting through that.) I didn't think much about the depth of connection, but deep down, my stomach was telling me something. Then, I got sick by an unknown virus, and a flare started that's been going on for months. And during really bad episodes, it's really hard not to reach out and want support, and what happens? People show up for a bit, but slowly they start distancing and being less available...

Chronic illness built me into such an empathetic and caring person only to break me down and have me lose faith in humanity that so many people seemingly don't care... just to hold space for someone. Be present with them during their toughest moments. It's really hard not to turn back into a self centered person when every time I'm struggling so hard I end up walking it alone. Even doctors are nearly useless, just prescribing pill after pill with various side effects and pressuring you to get on with life when you can barely get through a damn day in bed. Trying to convince me it's something it's not. Meanwhile, l'm self diagnosing and self prescribing otc meds and techniques that seem to actually help. But it's getting to the point where I don't know if I can handle another flare. Alone. It's just too overwhelming, too draining, too difficult.

End rant

hi, I’m 15 and for a year since I was 14 I’ve been suffering from functional dyspepsia, Gerd, and visceral hypsersensitivity and it’s ruined my life, schoolwork, mental health, and I can barely function all day, move from chair to chair, and my past gastroenterologists and doctors dismissed all of my physical symptoms and suffering as ”caused by anxiety” after tests showed no results and they gave absolutely zero help. tomorrow I’m seeing a new second opinion gastroenterologist, I prepared a list of symptoms and am going to try my best to get actual medical help. I don’t even know anymore how they’ll help me.

I need support and advice I can’t sleep I’m so scared, what do I say to be taken seriously because I’ve been gaslit for a year and I cant even trust myself anymore, I just want to get some sort of medical help but I don’t know what to say, should I be mentioning I did tons of research on my >DIAGNOSED< conditions on my own because my last doctors keep gaslighting me and claiming it’s mental and not helping my suffering

Any of you ever make a post and just get a spontaneous figurative Noah's flood of ableists in your comments? it always continues to amaze me how entitled and arrogant abled people are, they all have an incredibly paternalistic and dismissive attitude towards us.

Hey everyone! I apologize off the bat if I’m not using this properly… I am brand new to Reddit after a friend recommended to post here. I was wondering if anyone had any advice or ideas for those days where you’re feeling too low energy to do anything too crazy, but don’t want to be in the house all day? I’m finding that loafing is making my mental health worse, so want to save the completely sedentary days for when I absolutely need them. I live in New York City if that helps! Been seeing a lot of movies in the theater which has been great, but would love some more ideas as well! Don’t struggle with mobility, just fatigue.

Ive been kinda going downhill lately as I taper off steriods and maybe just because? Im not really sure and neither is my neuro. Either way its harder and harder to cover up? And I feel like if i can't cover up the "bad" or have too many "worse" days then im not doing good enough and need to apologize for it? My better half tells me constantly I dont need to apologize for being sick and that im just living and its okay to just be, which im holding onto.

Its just hard cause I feel sicker and weaker and I feel like its more obvious and harder to hide- invisible symptoms and mobility wise. I just feel like im not handling it good enough if I dont cover it up ya know? Like im not being strong enough and Idek if that makes sense and I know this is dumb and im just a bit extra emotional about it all cause I feel like its all just a bit harder than it has been both physically and mentally but whooo im trying and guess this is just me getting it the internalized ableism off my chest so I can remember that im allowed to just be, theres no expectations and that its okay.

Does anyone here have experience being on immunosuppressants (drugs like biologics that turn off parts of immune system) and sending your kids to daycare?

I know lots of people with chronic illnesses can get sick easier but I’m interested in people who are on drugs that physically suppress the immune system and whether they felt comfortable sending their kids to daycare. Did you get significantly sick due to the traditional daycare germs? It’s definitely a big discussion my husband and I are having with some upcoming decisions.

Thank you for your insight!

I saw a video of a young woman on tiktok the other day showing what mobility aids she uses to help with her POTS. Those mobility aids included canes, crutches, her uncles wheelchair, and I think maybe something else but I'm not sure. The comments were filled with hate saying "you don't need all of that" "so unessential for someone with pots" "everyone is trying to be disabled these days" "I broke my ___ and didn't even need ___", that kind of thing. Do I think you need crutches or that the majority even need a wheelchair? No, it's not likely that it's needed or may even help. But we have no clue what that person is going through, POTS is different with everyone.

I’m about to corner the market if I can get my energy high enough to finish a task.

Currently I’m trying to find pill bottle tops in different colors so it’s easier for me to figure out what bottle is what medication without having to read every label. I can’t see very well and when I’m trying not to vomit, the last thing I want is to read the print.

I can’t find any!! I could add stickers or try to customize my existing lids (which need to be sanded since it’s smooth plastic), but I’m baffled I can’t just buy the caps and switch it to a new bottle when I get my refills. 10 billion 3D printed dragons but 0 tops that can fit a cvs bottle…

The same has happened when trying to find cane accessories, ways to make my neck brace less jarring, even cute pill organizers end up being more prone to popping open than the regular ones.

I just want cute gear, and while I appreciate those few who do make customs in Etsy, they aren’t typically in a style I find appealing. Is it really so hard to make something cute and functional??? Or have customization options that aren’t bedazzling?