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

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.

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:(

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

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 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.

Ive been a sick kid all my life.

I had good family and good friends but I still felt so alone. Im 28 years old and I called my brother crying because I was happy that the pain i remembered as a kid was back because it meant the nervous pain throughout my body finally calmed down. I actually looked at the bruises on my arm and was poking them because I could feel that little pain again. I was smiling because I could feel the disease that ruined my child hood.

I tried all my life to be a doctor. I thought I did everything right. I remember after 8th grade I wanted to do something special because while other people were out having fun I worked corn detasseling to help my mom because she couldnt afford the bills. I remeber limping for days and just kept telling myself to just keep walking.

When I got new symptoms in bighschool that got worse in college I kept trying and I did my best. I had multiple jobs while doing research and working at a clinic. I wanted to make sure that nothing could hold me back. Then one year of trying to find an answer become 3. Treatments became useless and I eventually went into psychosis because of being in so much pain I couldnt sleep.

Its been 2 years since that happened. Im trying again. Trying but im scared itll be out of my control. Im scared that ill be in so much pain that my dreams will get crushed. Im scared that my brain cant recover again from the trauma.

But I have family and friends who love me. Its a beautiful thing. But it still weighs on me. I keep thinking if I have a good day how long will it last. If I can barely make it through a shower how can I help someone else in their time of need.

I dont know if I have an answer but I know I have to try. I know I do because I dont have an answer thats ever made me happier.

Ive been able to help so many people in my life and im so disabled. I dont know how. Ive stopped people from suicide. Ive helped people who couldnt afford their meds. Ive done research on neurotransmitters that I could have never imagined I would be doing.

But im still a scared sick kid wondering if the next day will be good or bad. Wondering if I can even get out of bed. I wish I had a good answer but all I know is that im in round 12 with my teeth knocked out still standing.

**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

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 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!!! 😭🫠

I want to get back into working out regularly after not having done so for a long time. I've managed to do some gentle yoga/pilates once a week/once every two weeks in 2026, but I really want to get up to working out at least 2 times a week to help my pain.

I'm currently being tested for hEDS and arthritis, but I don't have any diagnosis yet. Lots of pain most days though, which makes it difficult to find the motivation to work out :')

I also have Audhd, so if anyone has that combo as well, and want to answer a question or two, that'd be great :)!

I have a few questions:

1) What has helped you to workout more?

2) How do you find motivation to work out, especially when in pain?

3) Which kind of workouts do you do?

4) Any specific creators or youtube vids that you love?

Thank you in advance!:D

(also apologies if there are any errors, English isn't my first language)

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.

Dont really know how to do all this stupid health stuff. The doctors in my area are so frustrating. I dont have a single solid diagnosis for anything wrong with me. And im really struggling bad here. I feel like nobody is able to look at the whole picture and so nothing gets figured out.

-My joints dislocate randomly

-I have scoliosis because sitting with my feet hanging down hurts so i have to curl up

-My limbs constantly fall asleep from any position i sit in. Any pressure on a limb makes it fall asleep.

-Im fatigued 24/7 i have to take a 3-5 hour nap in the middle of the day most days because of how tired i am.

-I have headaches multiple times a day

-Speaking of my head it feels like a bowling ball sitting on top of a pipe cleaner a lot of the time.

-I have to take Zyrtec 3 times a day to eat food and not be in excruciating muscle pain and not be sick with nasal congestion and congestion headaches

-My job kills me because standing still is exhausting and feels like physical torture.

-My ankles hurt so bad from just having a somewhat active day

-When i cry it hurts everything so bad. Makes me feel like i have the flu

-I get lightheaded and dizzy all the time.

-Im in pain all day every day no matter what i do. I dont even know what not hurting feels like.

-Every day something new hurts to a concerning degree but nothing is ever noticeably wrong and ive stopped going to the doctor for abdominal pain and such.

-my knees over extend when i stand and after a bit its really uncomfortable but idk how to make them stop doing that.

-my guts never work right. They go to both extremes and once in a blue moon i get lucky and have 2 maybe 3 normal days.

-i have to pee abt 2 an hour. I have no issues with my blood sugar. This is fantastic when i work retail/s

-Some days its all so bad i feel like i need a wheelchair but. Would need a diagnosis.

I can only work one day a week atp and even that is too much. I feel like my body is disintegrating.

Im tired. Idk how to get doctors to listen to me. Idk how to get to specialists when i cant drive. I cant get accomidations at work because i havent gotten a diagnosis. I cant afford to pay people to drive me to appointment. I dont know whats wrong with me or what to do to make it better. Its all cyclically fucked up. I need a direction or something to hold on to rn because its so frustrating and exhausting.

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?

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 ?

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.

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

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.

Kinda panicking because reading this just sounds so made up hahahha.

I really need this new doctor to take me seriously, but I act like a functional human despite the constant pain and sickness, so most doctors just don't believe me. I have a terrible history of doctors just not wanting to do their jobs, so I usually tough it out instead of going in. Unfortunately I really need tested for multiple sclerosis, so I can't keep putting it off.

General summary of my last family doctor I saw for 8 months:

"If it's this bad why didn't you come sooner?"

"I dunno, I've always been like this, so I didn't think anything was wrong until it started getting worse"

"Riiiiiight.. what do you want then? Pills? A note?"

"Can we find out why I'm like this and treat the root of the problem?"

"Uhhh, here's a prescription and a referral to a pain clinic instead, come back in three months"

The new doctor has good reviews, so I'm hopeful. But omg the anxiety is just eating me up!!

TW: talk of self worth, social media, age, possible gaslighting

I, 20F, am undiagnosed with anything (but chronic L knee pain). However, I have been struggling with pain, fatigue, and dizziness that’s been getting worse over the last 9 months (though it’s been going on longer).

Recently, my social media has been flooded with post about people who use mobility aids just because. While I know mine helps me make it through the day, there’s a part of me that feels like I’m abusing it because I am able to walk (though not without struggle). I also just got approved for a temp handicap tag. I notice the stares I get when I step out of the car.

It’s also hard as my doctors haven’t been of much help whether they don’t believe me or there’s been miscommunication. I keep getting the “you’re only 20” or “why are you tired”. I’ve even asked for a wheelchair because I’ve just been getting worse and they said “you’re only 20 and once you’re in it, you don’t come out”.

I keep feeling like I’m overreacting even though I’m struggling. I don’t know what to do or think anymore. I feel like an imposter and as though I’m taking something or abusing something that is someone else needs more than me.

I have a very severe chronic illness, to the point to where I’ve been hospitalized or in the emergency room at least once a week for the last several months. I am in the process of switching my preventative, and because of that my symptoms have increased to life threatening levels, thus them wanting to place the port.
It will be on my right side, and to be honest I am petrified. I’ve never had this done before, and I am concerned on how it will change my day to day, at least for the first few weeks.
I’ve come to grasps with the surgery itself, and have learned to minimize my anxiety towards it, but the port itself? I am afraid of the specific implications.
So, to anyone who has ever had a port placed, here are my questions.
How do you sleep? I sleep on my stomach, and don’t know how I am going to adjust
 How do you function without being able to lift more than 10 pounds? My backpack for school weighs more than that.
 How mobile is my arm going to be after surgery and a few weeks in? I am right handed, and am afraid of the lack of function 
 Can I lift my arm to eat and brush my teeth after surgery? 

The other factor is that I am completely blind, so I have a cane that I use in my right hand. I was advised not to use my cane for a few weeks, but I need it to literally go outside or do anything that’s not in my house.
I am not asking for medical advice, I simply want to know your experience and your story with the port to maybe help minimize my anxiety.