Trying such “well tolerated” meds and it failing or having side effects that are uncommon is heartbreaking. For others it’s such a non issue, this biologic? sure, it’s so well tolerated. nobody has an issue with this. to, oh well we are gonna postpone this because you might be reacting badly. I cry because I’m tired of 12 years of trying different meds. hormonal, anxiety, depression, insomnia, skin meds, antibiotics etc. I have to accept going back on hormonal meds means I’ll have to combat the pituitary side effects with Cab. But I can’t go without it. and now this biologic might not be a match. Horrifying, because my system is so crappy my broken skin gets infections that lead to me not working for a year. I need this, and now it’s just me being burdensome to other people. Why don’t I just “go with the flow”. I’m tired:(

After being sick for a year I finally have answers. Today after my endoscopy I was diagnosed with CNVS (chronic nausea and vomiting syndrome). It’s a rare chronic illness and my symptoms present as very severe. I have been searching online to read more about it, but there is practically no information on CNVS. It’s almost as if this syndrome doesn’t even exist. I just want to know more, but I guess I’ll have to wait until my follow up appointment in two weeks.

On the bright side there is a medication that can supposedly help my symptoms which I will be starting tomorrow. It’ll take a week to start working but I am REALLY hoping it helps. Until then I will be on a liquid diet. Ahhh I’m so relieved I finally have answers, even though having a rare chronic illness sucks a lot. At least I can finally start treatment.

I remember working full time, going out socially after work, having busy weekends.

Now, especially this week in particular, I can only manage a shower with a hair wash in a single day.

This is chronic illness mixed with depression mixed with being neurodivergent mixed with trauma

I'm currently living with family with very little private space and my sibling just got COVID.

Her doctor just told her that she'd feel bad for a few days but would probably be fine after that, to take vitamin c, and not to "coop herself up".

The problem I have with this nothing burger advice is that we have vulnerable seniors in the house who absolutely do NOT need to be exposed any further and also the fact that I don't want to get it either! I don't have insurance and I have a lot of health anxiety as a result. I'm already chronically ill and I don't need covid to make any of that worse for me. There's no guarantee that there won't be lifelong complications.

She wasn't advised to wear a mask and keep a safe distance from others. In the year 2026 that is astonishing to me. Am I losing my mind? After a global pandemic that killed tons of people we just learned nothing? Her doctor couldn't even offer the bare minimum guidance??

I'm just pissed off. I gave her some masks to wear around the house but it just seems futile. She wears it inconsistently and I don't want to be the harpy. I'm known as the "overly" anxious one about health & hygiene so it will just seem like a me-problem if I press the issue.

I hate everything about this situation and I resent not being able to afford my own place anymore.

I have to do another 24 urine test!! I hate it i hate it I HATE IT!!!

it's so awkward having pee in the fridge for everyone to see. I've been treated poorly by room mates because "they dont want to see that". I dont have a cooler to put it in and I don't trust putting it on ice because its a very sensitive test. The lab sometimes mishandles it and messes it up so I have to do it again. This is my 3RD TIME doing this test. I hate it so much i really really do. It's a miserable test. 🫠😭

1 star of yelp!

Ive went too far down the chronic illness pipeline that I graduated from bloodwork into urine and stool tests!!! 😭🫠

Have you had to change your working arrangements, your career, jobs or has it meant you’ve stepped back from applying for promotions?

If so, how has it impacted your self esteem and how have you coped?

I used to work out 1-2 hours a day between strength training and walking. I’m heartbroken I can’t do that anymore. I’m trying, a few days a week, to walk 30 minutes. Have you found walking 5 minutes here and there is better than 30 minutes at once?

I am only 27 years old and I was just diagnosed with my second chronic condition, this one could cause me to drop dead at any moment of my life completely unprovoked. This diagnosis hurt me so bad that it pushed me through to the opposite side mentally. My whole life I have had horrible health anxiety about every little symptom i experienced, and now that I know about this condition, i am so numbed by it that every thing i feel becomes “oh well” or “this is it”. I can barely even bring myself to care about the treatments because it doesn’t get rid of my risk of suddenly dying. Just makes it a lil less. I guess i’m just looking for a similar story or someone I can talk to who understands this feeling i’m describing. And yes, I have a therapy appointment booked.

Looking forward to connect to people n make friends

i can’t sleep longer than 30 min because the pain wakes me up, i have nightmares the whole time, i have no friends left, i get a new medical bill every day and haven’t had a job in a year, no insurance, all my life savings going down the drain for me to suffer longer and longer. i just want it to be over with, if they can’t find a cure or treatment i don’t understand why i have to keep doing this, i am in constant agony. i would do anything to make it stop. i keep begging for more pain relief help and they’re probably putting drug seeking behavior on my records.l just want the pain to stop. i’m in so much fucking pain

**TW** Self harm

Basically I am now in my 30s, I have autism, ADHD, I am exhausted and in pain 90% of the time and have a long list of other health issues that fall under the umbrella of autonomic dysfunction. I also have immense difficulty focusing and learning new things to the point of it feeling like my brain just stops working sometimes.

I have had around 20 jobs in my life and have only been able to maintain one for roughly 4 years because it was work from home. I have been to school for multiple things but I failed the first time around and I cannot pursue the other thing due to my health. I did quite well at my last job initially, far surpassing most of my colleagues, but would put in the bare minimum of work near the end due to endless burnout.

Sometimes I will randomly become ambitious and gaslight myself into thinking that I can do anything, so I stupidly tried applying somewhere else because my salary was pitiful. I ended up getting the job miraculously, but they ended up not being at all accommodating of my health issues and I lost that job within a few months. So I am now unemployed and I lost the one work environment that worked for me.

I love cooking, I used to love drawing and gaming, but doing both of those things now causes me physical pain, and I have lost motivation to do them. I find most things incredibly boring and almost nothing stimulates me anymore, conversation drains me beyond belief, going into an office for a day requires that I take the next day off to recover, otherwise my nervous system gets stuck in fight or flight and I become very ill. I don't have the 'gifted' form of autism where I am good with numbers or math, in fact I have a math learning disability that has barred me from pursuing the few things that I actually wanted to.

Most of my time is consumed by 'resting' even though I barely do anything. I force myself to go to the gym every two days, but it makes my pain even worse. I do it anyways because I am always in pain regardless. I look normal, so everyone treats me normally even though I am disabled, so people just assume that I am a weird misanthrope because I dont go out to bars, go for walks and other things that normal people do.

My health and my cognitive abilities have steadily declined year over year and so have my spirits. My ambitions do not align with my abilities and it is incredibly demoralizing. It feels like no matter how hard I try, I will always be held back by my health, even when I do everything right and take care of myself.

I am not suicidal, but I was several years ago and I remember coming to terms as young as 6 years old that I would likely not live a long life. I guess I've stuck around this long because I was curious if things would change, and I don't want to traumatize my family.

I guess I'm just curious, but how do people live like this and lead a long life? I am in my early 30s and am exhausted simply from doing the bare minimum of existing, how am I supposed to build a career and the rest of that?

-A friend who is very tired

I just had my balloon angioplasty to open up my iliac veins which were EXTREMELY compressed. It's been about a week since the procedure. I took the day of the procedure off from work as well as an additional day after. I was told my pain would reduce pretty quickly. It sort of did, but I still had a ton of pelvic pain.

I remembered my pelvic MRI said something about my IUD's arms penetrating the sides of my muscle wall in my uterus, so I went to the gynaecologist.

Now I'm being told they can't just yank it out because it's highly likely the arms will break off and stay stuck inside. So I have to be PUT UNDER in the operating room so they can get it out safely.

It's the busiest time of year at work right now and I was already trying to save up leave for my upcoming stent insertion. I don't have enough leave built up. My coworkers are telling me to prioritize my medical stuff but I feel so bad dumping my work onto them. I need to get the procedure done soon as the doctor is worried the arms will continue to penetrate deeper and be harder to remove.

They were all so happy for me, that I'd finally get somewhat better, at least for the stuff that can be fixed. And now I have to tell them I need another procedure.

The torment really is eternal huh

I’m 20F, and I’ve been dealing with unexplained stomach problems since I was 8. I have PCOS and intolerances to several common foods, including dairy, gluten, yeast, and eggs.

I’ve seen doctors, but I still don’t have answers or a treatment that really helps.
I’m often nauseous, have stomach pain multiple times a day, and generally feel unwell. Stress and almost anything else can trigger it, and I haven’t found a consistent connection between what I eat and how I feel. Painkillers don’t help much, and I can’t rely on them all the time.

The hardest part is how much this affects my social life. Going out is exhausting because I’m either focusing on my pain or worrying about when I’ll start feeling bad again. Sitting or standing for too long is difficult, too.
I have a few friends, but we rarely meet up, and I’m scared we’ll eventually drift apart.

Most social activities involve eating out or drinking, and people often don’t take no for an answer. They keep asking why I’m not eating or drinking until I end up explaining my health problems. Sometimes, I give in and eat something or accept a little alcohol just to fit in and avoid standing out, even though I know I might feel worse afterward.
I hate having to choose between protecting my health and feeling like a normal part of the group.

Even when I do go out, I often hide how bad I feel and end up being the person everyone else talks to about their problems.

The confusing thing is that during exercise mostly i feel okay. I’ve always been active and can sometimes exercise for hours without feeling bad, even when everyday activities are exhausting.

I know there’s more to life than this, and I genuinely want to experience more of it. But emotionally and physically, staying home feels safer, and I often feel better alone than I do trying to socialize. I’ve also never been in a relationship because I struggle to imagine how I could manage one while feeling like this, and I don’t want to feel like a burden.

For context, I’m at a healthy weight, have no issues with food (mentally) or body image, and eat enough. I mostly cook at home, avoid foods I know I don’t tolerate, don’t drink or smoke, and try to take care of myself. Unfortunately, none of this has made my symptoms predictable.

How do you maintain friendships, date, enjoy hobbies, and get out of the house when you never know how you’ll feel? How do you stop feeling like you’re missing out on life without constantly pushing yourself past your limits?

I’d really appreciate hearing about your experiences and any practical advice. I don’t just want to manage my symptoms; I want to learn how to actually live my life despite them.

Hello. I am male, early 20s and have had a pretty crazy year, mostly due to chronic illness. There was some stuff that had been on the cards for a few years but doctors hadn't told me but the short version is, this year things got pretty bad. I had some bad recurring illnesses late last year and then from March through May, had over 12 seizures and then there was a day in the middle of May where I had 4 seizures in a day alongside vomiting and ended up in A&E on a drip.

I have had a few extended stays in hospital alongside a load of appointments and have found that there is a lot of stuff both physical and mental. On the physical side, I found out I was born with Wolff-Parkinson-White syndrome, which thankfully I had heart surgery and got two electrodes cauterised as they were worried if they didn't act quick with some other symptoms, the chances of Cardiac arrest would have been high. I have been told that is good for now but may come back eventually. I found out I have a collapsed gallbladder alongside several gallstones and echogenic debris and have had recurring gallbladder attacks for months now, that are some of the most pain I have ever felt and can last up to 6 hours and there was an incident a month ago where I met a few friends and then got the bus straight back, but had an attack on the bus and had to get off in a dangerous area at the side of the road and try not to vomit or collapse and reduce the pain and it took over an hour of pain and sipping water before I could even have enough strength to message someone for help. I had anemia but have been sorting that with B12 injections every months, which I needed as apparently my Ileum can't absorb B12, although the doctors haven't mentioned that much recently. I have inflammatory bowl disease, so I often feel under the weather and will have really bad flareups, vomiting etc. from time to time and sometimes like I'm gonna pass out and that is quite draining and as a result, I have the key for using disabled bathrooms as it is genuinely a life saver, both for flareups and if I ever feel like a seizure or attack coming on as I have privacy and space. I have not listed everything and there seems to be some new negative development each month (made worse by doctors telling us some of it like the gallstones were listed in documents when I went in back in 2024 but no-one told me so the collapsed gallbladder was preventable).

I also have pretty bad anxiety, depression, autism, adhd and CPTSD and that can have an effect too on your mindset and I think the physical health issues have definitely worsened things on the mental side, especially as I rarely get to see people anymore and it sucks to see like my friends on holiday while I am in a hospital 3 hours into a Gallbladder attack where the nurses are missing and I can't even get a paracetamol (took 5 hours and I fell asleep after 4) as it makes your situation feel worse.

I have accepted that the hospital stuff is gonna remain for a while, both as so far has been dealing with heart and also there are delays from all of these, for instance medications for one problem may conflict with surgery for another and also just general medical delays, like even though the Gallbladder scan was in May and they they said they were contacting the Gastro team, they kept ignoring it until we pushed a separate doctor in September. I had to miss graduation for my degree bit got an extension and somehow pulled off a miracle and got my degree in the post recently and for the meantime, I am just sort of at home and going to appointments for the foreseeable future and I reckon the gallbladder surgery will probably be January or February hopefully.

The reason I am saying all the specifics of this has meant that I am not active as I want to be and do feel a bit guilty about that. I am constantly in hospital or constantly unwell, drained and pretty depressed from all of this as it has been such a sudden change that has effected my life irrevocably and it is a self fulfilling thing where thinking negatively about it makes it worse and my weight has approached 100kg.

It has gotten to the point that I have been thinking a lot about my life, the person I am and the person I want to be, as it is hard not to reflect after the year I've had, (especially given external factors I won't list) and just genuinely believing there is a chance you might die enough times - there have been at least 3 moments in the past 12 months where not like 'oh this is really bad' but where I genuinely thought I was at the end) as that stuff sticks with you,

There are so many things I want to fix in my life, but I am trying to break them down into manageable separate things to focus on so that I can improve myself, give myself something to do and also build up my strength so that if I have more flareups, gallbladder attacks or if the seizures return after months of nothing and just anything else that is on the horizon, my body will hopefully be better at fighting it as currently it feels like I am held by tape.

I have an exercise bike in the kitchen that I am going to get back into using as in Summer 2025, I was pushing myself hard with that and was so happy when I got to 100km and I was doing minimum 20km a day which for me was good. I am going to try and get back into using that, even if a lot slower. I know I'm not super mobile now and even the ways I could push myself probably aren't on the cards now, but that doesn't mean I can't do something as 30 minutes of slow to moderate cycling a day is better than nothing. I am also thinking of using an ab crunch machine a relative has and maybe getting some weight for myself.

What I want to ask though, is please can you offer up any suggestions, both to me and to anyone in the sub regarding this stuff.

I know I can't go to the gym currently, both due to mobility and also anxiety, but a point that I don't see people I know in similar situations bring up is the distuption angle. I am probably bad at explaining, but what I mean is that being chronically ill and disabled and in hospital does interrupt your life and there have been things like I was doing counselling and had to stop due to all the hospital stuff and I am gonna try and get back into it. If you are anxious, you don't necessarily think about that you can do something now but can't later, you think of that you just can't, so the gym itself is kind of not happening for now. I think about that in my life too, like I have wanted to work out recently but thought that the surgerys and general being unwell that will definitely happen in the next few months would get in the way of the gym, so I want to try and get good habits that I can dip in and out of easier at home as it is less daunting, so if there is a day that I feel better, I can do something without using up all my energy to go to the gym and then feel nervous.

I want to add, eventually when I have lost more weight and maybe feel a bit more confident and have more of a gauge for where my health is at, I will join a gym, but for now, I just need to start small at home and adapting to my lack of mobility for now.

I am gonna try and do the exercise bike, maybe ab crunch and some weights at home as well as dieting, but I want to ask if there any other suggestions? What has worked for you? What hasn't? Any advice?

TLDR: Chronically ill with recurring seizures (that are quiet for now after heart surgery) and Wolff-Parkinson-White syndrome that has been put to bed for now, a collapsed gallbladder with gallstones that caused me by weekly attacks that are the most pain I have ever felt, inflammatory bowel disease, dysfunctional Ileum and several mental illnesses that have only gotten worse due to the past year, resulting in my weight hitting near 100kg at 22. I want to workout and am considering using my old exercise bike, alongside dieting, ab crunches and maybe some weights but also want to pick up good habits where even if I am under the weather, I can do something at home at least, but I wanted to know if the sub had any advice or recommendations on what could be helpful, exercise for if you are Chronically ill and just your own experiences.

BONUS QUESTION: How did you find getting back into the world after your chronic illness hit hard? Mine hit right before I was graduating (nearly collapsed a couple of times in Uni) at a transitional point in my life and it has felt like I am barely here and is hard to get back into regular life after all this, especially while it is continuing sl what has helped for you?

Thank you and apologies for the rant ha. Looking forward to the responses.

this sounds stupid because like, obviously i’m still sick. i have chronic illnesses, so they’re not just going to go away because im happier. but it just sucks because im finally living where i want to live (for college), but i can’t do what i wanted to do. like i can’t walk everywhere like my peers (it’s a walkable area) because i struggle to breathe. i can’t spend too much time outside because im heat intolerant and it makes me feel awful. i know i shouldn’t compare myself to others, but i am. and i feel guilty, sad, and behind.

Hey 43m just looking for other chronically ill friends to talk to daily. I can talk about anything and anything. I like sports, travel, food.

Sorry, it’s a long one. Thank you to anyone who takes the time to read and reply.

I’m 19F and I have Crohn’s Disease, Ulcerative Colitis, IBS, IIH (Idiopathic Intracranial Hypertension), Bile Acid Malabsorption and a couple others. I’ve suffered with the main one being IBD since I was 13. Since then everything but my family has been stripped away from me. School, society, happiness - my life for the past 6 years has just been pain. Non stop pain. Always thought I’d never be in a relationship because who wants to deal with this right?

I met a guy online through a videogame, 21M, and he’s been my saviour. He’s brought me out of a really dark time in my life. Ever since we spoke we clicked instantly. Never had this connection with anyone. Yada yada yada we speak and we are really close. We’ve known each other for a year almost but been seriously speaking for 10 months. There’s always been problems. Not typical relationship problems, we’re fine in that regard. But showing myself. Letting myself be vulnerable. Showing my body etc. My illnesses have affected me so much and I’d never realised how much until this. How it impacted the way I viewed myself - constant bodily changes, self esteem issues, being quiet due to not socialising, etc. But we worked through it.

10 month mark. I’ve still not shown him my body. He gets frustrated at times because of how close we are. We never have ‘phone sex’ which is something we enjoyed and is a sexual element together. I’m always so low mood. No energy. Toilet all the time. Migraines twice a day. He says it hurts him. Doing the same thing everyday. Me being the same everyday. Having no excitement or expectations from me at all. He never blames me. He’s been great, more than I could ever ask for. I can’t help but feel guilty for all I put him through. I know it isn’t my fault but I still feel it. He would never deal with this in a somewhat normal relationship. He’s brought up breaking up a couple times. Not because we don’t love each other. Not because we have issues. Just this. ‘Maybe Im too sick for this’. What do I do ?

Hello, I'm from India

HIV positive since almost 10 months

It's been a while since I felt okay

Somedays pain is too much on top of that,the neuropathy troubles

I'd appreciate if someone just could talk to me

Thanks

I'm not sure if this is the right flair, but I am 22 F and 3 days post placement of my port after over a year with a PICC line. I have to use my port daily.

I'm just really looking for whatever anyone else with a port has found useful or beneficial to have/use for comfort or ease of access, etc. Basically any useful accessories.

If you also have any tidbits of advice for a newbie to ports, that previous PICC experience wouldn't cover, I'd also be appreciative.

I was diagnosed with epilepsy 4 years ago. I started with little "skips" and intermittent aphasia. I talked about it with those around me but they assured me i'm crazy and I couldn't focus due to my ADHD. Then followed by 2.5 years of actively having tonic clonic seizures at least once a week. It ruined my mental health, being self-employed, no longer able to work or drive. I never got checked out by the doctor and the first tonic clonic happened while driving. Cue a license suspension and 132k insurance payout. Still feel bad about that old lady's greenhouse. I moved back in with my parents, became severely depressed, went to a shrink. After the initial intake and "what's wrong?", he told me if I wasn't willing to take medication, he couldn't help me.

My neurologist couldn't even balance seizure meds, let alone let a psychiatrist mess up my brain chemistry more. It got so bad my dad cleared my gun safe and took them out of the house. My body was in constant pain, I couldn't talk or eat because I split my tongue nearly in half during every seizure. One day, my buddy came over and basically said I was being dramatic and life goes on. While I felt incredibly offended and internalized none of it, I decided to prove him wrong, that I couldn't do it. I was sick. We went to the gym so he could see the pain I was in. I did 3 sets of dumbbell presses with 10lbs and I was in so much pain I had to leave. Next morning, he's in my driveway for round 2. I refused. He wouldn't leave and weaponized my parents into believing I was not pushing myself hard enough to get better. Through 4 doctors, about 35k worth of testing, copays, self-pay, I am now broke and may need to file for bankrupcy. But the seizures are well-controlled enough to continue working out, even though it's constant pain. I can press 60lb dumbbells for 10 reps now. It's now pain for a reason. It feels that the pain isn't for nothing. It's not my body rejecting my brain. For the first time in a long time, I feel proud of my body.

This isn't a pull yourself up by your boot straps. I understand that I may be "privileged". I'm just feeling alive for the first time in a long time. In 2 months I'll be cleared to drive. I don't know if i'm too confident or stupid, but I went out and bought a used car in cash. I refuse to let this condition destroy me.

I have been dealing with mysterious chronic pain and symptoms for the past year and a half. I have recently been diagnosed with POTS but my rheumatologist thinks there is more yet to be uncovered. I have had to switch to online school, which has put my pursuance of music completely on hold. I have had a very hard time with loneliness and difficulty relating to my friends since the onset of my illness. I am looking for friends in similar situations. Please message me if you are also dealing with this and are looking for online friends. I love to read, create music, and I’m not very internet savvy but I love Minecraft and understand that video games may be a means of connection on platforms like this. I am new to chronic illness and pain, so please reach out to me and help me find some friends because it has been a very hard time recently. Thank you for reading this