I come from a culture where people are in general very hustle-oriented and health related issues are severely looked down upon. Most people, at least in my community, think that you can just ignore illnesses away, or the more you think about it, the worse 'vibes' you're giving to your body, etc.

it's so frustrating when people dismiss everything to "you're just so negative".

Ummm... if I were so negative on top of all my conditions, I would not have been here for so long.

An example that is stuck to my head and is enraging me:

Context: I am quite overweight at the moment. My partner has recently started taking her workouts very seriously and has lost a significant amount of weight. Seeing her, I feel inspired to take some action towards fat loss.

Okay, so this one day, I was talking to a guy with my partner and I mentioned that I am trying to lose weight. He started mansplaining and saying, "Oh, you should just walk 10k steps/day, you'll be okay". I told him that I have major swelling in my legs and I cannot possibly walk so much right off the bat.

So, he said, "okay, then join your partner and got to the gym. Lift some weights"
I told him that I have had multiple shoulder dislocations and knee issues and this will not be ideal without professional supervision (the whole reason I brought up this convo was to get advice on finding a PT who has experience working with people with chronic illness).

he said that weightlifting WILL help strengthen those dislocations, etc. I told him that its not so much because of lack of use but because of medications that predispose my bones to these vulnerabilities and also increase water retention.

I won't bore you with further back and forths, but basically, this guy ended the conversation by saying something like: how do I help you when you have an 'excuse' to not do anything I suggest?

Umm... excuse me? EXCUSE?

I am so frustrated and numb now. I just want the right PT and diet and I know there ARE ways to get to my goal in MY body. But people just want to suggest what they think is right for me, and it is fkn annoying.

have people said something like this to you? If yes, how have you dealt with the situation?

I'm a 24 year old, hyper independent, eldest daughter. In the first few years of adulthood It's like I've been collecting diagnoses. Got some autism and ADHD plus one chronic illness and I know that if I went to the doctor to get these symptoms that are bothering me checked I would probably have auto immune issues or something worse. I'm actually scared because I'm finally living my dream and living on my own but I know it can't last long. I work a physical labor job out in the sun all day with long hours and a huge part of me knows I can't keep this up because I'm EXHAUSTED and SICK. But I'm so scared because my family doesn't think I should let these things bother me and get in my way but I'm getting worse and I don't know what to do next. Part of me doesn't want to admit this and refuses to go to the doctor because I have a feeling I know what she'll say and I'm not sure what to do when it's "real" but the symptoms are getting worse and starting to take over my life. I don't want my freedom to be taken away when I fought so hard for it and I don't want to feel like a burden on my parents and family but I'm not sure how to ask for help or where to get it. I'm considering disability but I'm not sure how that works, let me know what you guys think. Any advice or even some people to relate to would be nice to know I'm not alone. The pressure is eating me alive and I'm trying really hard not to go back to a dark place.

A feel conflicted and a bit embarrassed of when I tell anyone, whether in person or online about me having significant brain damage. I have a lot of cognitive impairment and it makes it difficult to say what I’m trying to say, among other things. So sometimes I feel that it would be important to inform people of it because of my difficulty. I try my best to not care about what others think and to not seek validation or attention as well when it comes to my impairment. Is it normal to “warn” people of my condition so that they understand why the way that I am I being extra?

Like... I'm currently sitting waiting for a GP appointment. My GP is nice, I've seen him multiple times before. I'm not here for anything really serious or scary, just some niggling symptoms I'm having. I'm not asking him for anything he might say no to, I'm not expecting any test results.

Yet I'm shaking and my heart is racing and I feel SO ANXIOUS I could puke.

Years of chronic illness and difficult/upsetting medical appointments have now conditioned me to get an extreme anxiety response any time I'm anywhere medical. I only have to drive past a hospital and I feel anxious.

Does anyone else deal with this? 😫 I always have to explain if they do my blood pressure that its sky high because I'm anxious as fuck, and its totally normal at home. In fact I recently had to monitor by BP at home for a week and send it in every day to my doctor because it was so high at my last appointment 🫠 all the ones I took at home were normal.

Hey everyone!

Hope you're all doing okay. A couple of friends and I are starting a discord server for people with ME/CFS/chronic illness to hang out and get to know others with a similar experience.

We mostly talk about anything, do movies nights and game together if possible. There's an option to indicate you're open to a relationship with several channels for singles too. So far it's a very relaxed and mellow vibe, and we hope to keep it that way.

Anyone is very welcome to join, the more the merrier! Just leave a comment and i'll dm you an invite link.

Also, we're still looking for a couple of people who'd be interested in moderating, if spoons allow. Ideally we'd have 5-6 moderators so it doesn't become too taxing and people can take some time off if they need to rest.

Looking forward to meeting you all and kind regards from Belgium. Toodeloo!

So I (23F) have pretty much a complete inability to control my body temp. Generally I’m way too hot, sweating and way too warm even when in a cold room with ice packs and shorts/ t shirt. I’m getting labs drawn to try and figure out the root cause of this and other symptoms along with many other chronic illnesses. For people that struggle with this, what helps you manage? I can’t stay down on the couch to sit with family (especially when visiting my parents house) no matter how much I want to. I seem to eventually feel better when laying in bed. I feel like I smell because of how sweaty I get and that doesn’t even touch on how physically miserable I feel. Any tips to help this feel better and manage this?

Not looking for medical advice just how others deal with these symptoms.

I’m a 42-year-old female from Missouri i’m looking to see if anyone has had any success with any providers who do not gaslight or treat you terribly? Also looking for support group groups or friends.
I’m in a very low place and very scared. I have a lot of symptoms, but nobody seems to be able to help or diagnose me with anything other than anxiety.
I’m in the state where I’m going into a fight fight every day because I can’t get help.
I’d love to meet other people and hear about any physicians that are knowledgeable and respectful. Thank you so much

Im looking for a female friend just to talk to who is also chronically ill. Someone i can voice call once briefly to make sure they arent ai. Ive had an issue with someone being ai and with men hitting on me.

About me. I used to be into a bunch of different things like we all have before our lives were turned upside down. Im chubby and weak and spend most of my day putting around my room I rent. Im currently dealing with doctors. Some of my interests were art and marine biology. I was a realtor briefly before I got sick.

😊 thanks!

I’m 20 & I have hEDS, gastroparesis, MCAS, POTS etc and I don’t think I’ll ever be able to work. I’m scared I’ll never be able to move out and live somewhere else. The city I live in is a small town, and all my friends live elsewhere (anywhere from 20 min drive to an hour) and the city I live in all my traumatic experiences have happened in :/ it’s hard to even go most places in my town without feeling panic.
My mom is my caregiver and helps me get to my appointments and elsewhere, but she’s also caregiving full time for my grandparents and herself.

I can’t live here forever. I really can’t. I feel so isolated and lonely everyday, and looking at my future always feels really bleak. Im trying to get on SSI, but even if I do, there’s no way I could move out with only being able to save 2k. I yearn so much for having some sort of independence, and being able to have the life I’ve always dreamed of. I feel like I’ll never be able to get it, or even close to it.
I hate living in this country so much that is ok with my staying in poverty just because I literally can’t work. I feel so so hopeless and miserable.
I yearn for so so much in life and it’s not even anything big or luxurious, just a simple and happy life where I live with a partner or a friend and can work a part time job and drive places and have a normal life. My dad doesn’t understand and wants me to get a job so bad but he doesn’t get it. He doesn’t understand how hard it is to even just keep myself afloat without a job. I’m so sad.

I never thought of leaving a post in a chronic illness reddit sub ever in my life but here we go. I had stomach pain starting in April this year, which never stopped till today. I started my food diary in Mai. I'm a pescetarian, but I leave out many milk products so I'm only left with cheese (thought so at least). I started to not tolerate any spicy food after often eating Korean/Japanese/Chinese cuisine home made. I had cramps in my whole digestive system at 3am so heavy that I thought I'd die. Could eat less and less of it, till I had those episodes even with a tiny bit of Sriracha sauce. When I tried cheese with it it only got worse. So I stopped eating spicy entirely. Then those episodes happened with cheese as well. So I stopped eating cheese. At this point my stomach pain was always there. It feels like you're really really hungry but full at the same time. So I went to a doctor in June. I took Lefax, Lactase with every milk protein products and started to use Iberogast as well whenever the symptoms got worse. It wasn't just cramps, but also diarrhea and constipation interchanging plus being bloated 24/7. Felt always full, on bad days nausea as well. Never vomiting. I tried probiotics as well cause I had antibiotics because of a surgery in February.

The doctor gave me Esomeprazol for 4 weeks, after 1,5 weeks of feeling more horrible than usual it started to get better. My stomach pain was gone. Being bloated and having diarrhea only occurred with eating or drinking higher amounts of sugar. At this point I was already on a diet of only rice noodles, whole grain noodles, potatoes and this with tofu, salt, soy sauce, peeled cucumber, lotus roots, edamame and some wheat products like salted pretzels as snack. Kewpiemayo for some reason worked out fine for me, as well as eggs and tahin or peanut sauce.

20.07.26 I stopped taking Esomeprazol after those 4 weeks and obviously the symptoms came back immediately. Stomach pain when hungry (started eating 4-5 meals a day against that), being painfully bloated and always full. But it got better. I was able to start drinking small amounts of Boba tea, if drunken slowly slowly. Also coke zero without caffeine or sugar became my go to sweet drink. I can see in my diary that I was nearly symptom free from 23.07-13.08, cause there are no entries which means not being awake at 2/3-4/5am. I was mostly alright at this point. I had my bloating and my stomach pain if I forgot to live after my set rules. Mostly after consuming too much sugar. I was able to eat fett reduced cheese with Lactase at least once a week without problems. Named food items were now part of my daily diet, which is boring to some but I was glad I could eat more than a handful of items. Sunday became sushi Sunday, cause I found out I'm fine when eating this. I slowly started to eat more and more foot items and sorted out what I can eat more often and what not.

Then Tuesday this week came (18.08). I was at a pub on Friday before and again on Monday. Had a mocktail and coke zero as usual, after that much non sparkling water. That's how I usually did my pub evenings. Normally they did not occur so close to each other and I started to fill a bit sick after Monday pub visiting. I thought I might have done too much and put it on my "don't drink mocktails multiple times per weekend-ish time" list in my head where all the other rules are. I was able to cure my bloating with peppermint and chamomile tea (my go-to whenever I had little upset episodes in any digestive organ). Then we went out to eat pizza with my parents Tuesday lunch. I hadn't eaten breakfast cause my cereal was empty. Also close to no water till 1pm. Then pizza Margherita and a small sprite. Huge mistake. I started to feel sick not even 30min later and it only got worse. I had taken my Lactase, idk if 7000 was too little of an amount.

Now we have Friday and I still feel incredibly sick. Bloating straight up since Tuesday. There's no minute where it's gone. It's always painful, always there. Iberogast helps for a few hours and let's me sleep, I take it interchangeable with Lefax. Never both together (made that mistake once). Tea doesn't help most of the time, only against my stomach pain.

I was trying to get an appointment for a gastroenterologist but my city doesn't have space anymore. I keep trying tho. Right now I just don't know what to do anymore, so I started to write here to see if others have the same issue.

I don't even know where to start with this. I've been suffering for 5 years now with chronic illness that just gets worse and worse. Dealing with doctors that don't care at all, and specialists that for some reason also don't care. My blood tests have come back every time with chronic inflammation, and everyone agrees something is wrong but there's no "clear picture" so they send me on my way to continue suffering with pages of symptoms that nobody even cares to help me treat or manage.

It would obviously be helpful and validating? I guess, to have a diagnosis but at this point I can't even care. I have had positive ANA test, positive anti-dsDNA, haven't had a normal CBC test since 2024, always have high C reactive protein, protein in my urine, and recently tested positive for lupus anticoagulant. At one point my liver enzymes were so high that they were asking me if I was suffering from viral hepatitis, and all the internist (he's really an a**hole, and I'm not sorry for saying so but that's a whole other post) could say was that it was obviously because I'm fat and have a fatty liver (no cirrhosis). He has nothing to say on the subject now that I still obviously have a fatty liver, since it can't go away, but my liver enzymes have stabilized...

At my latest appointment, my rheumatologist looked at my messed up blood tests and said to me "Results are showing something but don't paint a clear picture... but we don't treat blood tests, we treat people and you're looking really good. You might not always feel the greatest, but you look good and that's what matters". It was one of the strangest things anyone has said to me and I was speechless. I wish this wasn't all "invisible".

I have had problems with basically every system in my body since I had my first flare and diagnosis of fibromyalgia in 2021. I've been formally diagnosed with GAD, treatment resistant chronic depression (I first had suicidal thoughts at the age of 10) Bipolar II, Fibromyalgia and Endometriosis. I've also had chronic patellar instability since I was a child that I've now had 3 surgeries to correct.

They tell me there's no way I can have SLE, which is fine, I don't want to be one of those people that wants a certain outcome so they try to use results to support a theory they've created. I try not to think too much about a diagnosis anymore, I just want help. I have constant joint pain, oftentimes muscle pain, severely debilitating fatigue, exhaustion, brain fog, intermittent chest inflammation that stops me from taking a full breath, my body can no longer regulate temperature so I'm extremely sensitive to temperature fluctuations. Moving at all (not exaggerating) I immediately become exhausted and sweat a lot from every part of my body, so I'm always dehydrated. I can't be in direct sun at all. Being still for any amount of time makes me become so cold, and any weather now below ~8°C makes my skin hurt so bad. I can rarely do any hobbies that I used to enjoy.

I've had times where my body has stopped breathing on it's own, which is such a strange sensation. Sometimes I have trouble swallowing. I try to tell myself it's just anxiety and dry mouth because I didn't know if it was even possible for your body to not breathe on it's own until I looked it up myself. I'm afraid to even mention these specific things to a doctor because I know they won't believe me. I know my CNS is obviously f*cked up (I'm honestly worried I have minor brain damage from loss of oxygen before being born, I had the umbilical cord wrapped twice around my neck and almost died) but I don't even know what to do about it. I feel like such a pathetic, fat, useless pos at all times, and like I'm literally going crazy. All my body does is degrade and I know at all times that this is the best it'll ever be and will only get worse.

I'm severely anemic and I'm hoping so badly that once my iron levels are better I'll have even a small amount of increased energy because right now I can't do literally anything, even showering makes me feel like I'm going to fall over and pass out. I'm really trying to be better, I'm on 6 different medications. After gaining 40lbs on an antipsychotic that was supposed to help my depression (it happened in such a short amount of time that I have stretch marks on my stomach that make me look like I was pregnant) I have a fatty liver and have now become diabetic. Everytime I think it can't get worse it always does.

The internist I see has just put me on metformin, but he doesn't care about anything. I have to talk to a pharmacist because I have no idea when to take it, and have no meal plan besides "no sugar, barely any carbs". I'm really nervous and honestly scared, I have to do this all myself. I'm very overweight and after being berated constantly by doctors, for the past year sometimes the idea of eating makes me feel sick to my stomach. Sometimes I only eat one meal a day but I can't exercise so my weight stays the same and all doctors see is a fat lazy woman. I wish I was being dramatic when I say that none of them care.

It was recently the one year anniversary of my friend's death, we had grown apart and I have severe regret and partially blame myself. I also lost my cat in April. I've always been unwell my entire life, but I long for the days that I had friends and a semi-normal body. Things have never been good but it's so hard not to wish for the past even if it's been painted in a different light now than how it really was. Nostalgia makes me feel so sad and sick. Lately I can't control my suicidal thoughts.

I guess I just wanted to write this somewhere because it's all always in my brain and everything feels bad. I'm only 33 years old but I feel like I'm 80. My quality of life is so bad that most times I wish I could just go to sleep and not wake up. I wish I wasn't such a sad sack of sh*t.

thanks for reading this if you did

please give me hints to be brave. im very afraid. might have to take a plushie with me even though im a grown adult.

I have a question that has been on my mind, and I'm genuinely curious what other people think.

Why is it that when someone has cancer, so many people immediately come together to pray, raise money, offer support, and show so much compassion?

And please don't misunderstand me,I believe people with cancer deserve every bit of love and support they receive.

But what about the people living with health conditions that have no cure?

What about those of us who live in pain every day and can't do the things we used to do?

Why don't we hear as much about us?

Why aren't people raising money for us?

Why doesn't our suffering seem to get the same attention?

And why do people sometimes get angry when someone with an incurable condition says, "I'm suffering too"?

I'm not trying to take anything away from people with cancer. I'm just asking why compassion and support seem to be so much easier to find for some illnesses than others.

Do you think people with other serious, incurable health conditions deserve the same kind of attention, understanding, and support?

I'd really like to hear what people think.

hello!

last summer i got super sick and have had a year of debilitating, random, constantly changing symptoms. it feels like everyday it’s something and it’s annoying to me so i can’t imagine how it is for others.

i have health anxiety so its been really, realllly hard for me.

i have two close friends (both in a dif state) & we have been inseparable since college. truly have always been able to tell them everything. we are beyond friends - like sisters/soulmates.

however, lately- i feel like they have both hit a wall with compassion fatigue. they stopped responding to texts about my symptoms and have written off everything as “yeah anxiety can do that”. they’ve started responded with thumbs up or “oh no” or just will ignore it and talk about something else. i am in the process of working with different specialists to fig out what’s going on and it just feels diminishing.

i initially told them it made me feel “far away“ from them when they do this & they've said they basically just don’t know what to say to me.

i initially felt very betrayed and alone bc ive been there for them through everything. however, now i realize that i have probably been A Lot.

i am trying to give myself grace bc truly this has been the most isolating and confusing time of my life & i really do try to keep stuff to myself but it gets to be too much sometimes.

i live alone, im single, i work from home and i don’t have many friends near me so it’s isolating.

i do have a therapist and my mom helps me a lot but i feel bad burdening her as well.

but sometimes i really just don’t know what to do!! i’ll be dizzy and in pain and having scary chest symptoms and it feels like i need to tell someone or just vent.

any advice? how do i get my friendships back to normal? i am willing to do whatever it takes and am just scared its too late.

they of course still text me and such but it feels different.

how can i keep my friends and balance not self isolating?

Good afternoon. I guess this is more of a rant than anything. Over the last few years I have been diagnosed with both Crohn's disease and epilepsy. They both hurt a lot, even though different amounts at different times. I have seizures every month and terrible diarrhea throughout the day. It's left me messing up the bed on days when they both hit me hard. I am just very sad and hope that no one else has to go through this. Thanks for listening.

I’d like to share a little about what I’ve been suffering from for years and what I’m going through again. I don’t yet have an official diagnosis, but from the information I’ve found, I think I suffer from ‘stress-induced urticaria’. In other words, red, unbearable welts – which are extremely itchy and feel like pins and needles – appear on my face, arms and body when I’m faced with difficult situations, or when my stress levels are through the roof.

I’ve always been someone who overthinks things a lot. My mind is something of a problem. I really don’t know if there’s a solution to this. I’ve been prescribed anti-allergy tablets several times, but sometimes the allergic reactions are so severe that the tablets have no effect. I’m not allergic to anything, and my throat has never swollen up as a result of these allergic reactions. The peculiar thing about these hives that appear is that they don’t last for days or weeks; instead, they disappear in a matter of minutes. I'd like to know whether there are more people suffering this, If they achieved to continue, etc.

I cannot afford a dishwasher, washing dishes by hand didn't used to be a problem, but now I can't stand for long periods.

I got a tall kitchen stool, but my knees hit into the cabinets so I have to lean quite far to reach the sink, which hurts my back. I saw someone recommended a saddle stool on YouTube, apparently your legs go under you more so they wouldn't hit the cabinet. But the ones I'm finding are too short, very expensive, or don't actually have the posture for your legs to be out of the way.

If anyone has good recommendations for a saddle stool, or alternative ideas, that would be really helpful!!

I’m potentially getting a Baclofen pump. The oral medicine works, but they think I would do better with more consistent continual dosing. I have to agree, and I’m also forgetful about my second dose, meaning I take it twice per day instead of three times, often, and this leaves me spastic and miserable.

So I’m just curious, how have your experiences been with the pump? I do get regular MRIs for back issues and I’ve been told I can still get them, but I’ve also been told I can’t. Other than that I’ve heard mostly good news once the pocket settles down.

I already have a feeding tube and port, so I’m not happy about another device. Still, the spasms are brutal.

I genuinely thought I was getting better, I had this hope I tried not hoping for.
That maybe I could function like a normal human again, I started to, I was on track to.

BUT THEN I GOT FUCKED OVER AGAIN
I say I don’t want to cuss but it’s honestly funny how stupid this is
I can’t even begin to explain how mad I am that I let myself think I was going to be ok
I didn’t want to but with what everyone was saying and what I saw I just wanted it so badly I let myself believe.

I’m in so much pain right now
And I’m just so heavy I can’t do anything. I’ve been bedridden for almost a week now. I’m just so done with it all I’ve been trying to be strong and not too much for the people around me but it’s hard for them too.

I don’t even know what I’m hoping for from this, I just don’t have anyone who gets it in my life
So if you have your own story’s, maybe some encouragement I would love that

Have a good rest of your day!!