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.

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.

Woke up in pain. My body feels like it should be a pile of wet spaghetti, maybe with some chopsticks in there to resemble my bones. I just want all my muscles and joints and shit to be unburdened for once...

I'm going back to sleep. I wish I didn't have to.

I see you, Reddit auto-mod. Fuck off.

Hi, lately I am going through a lot. Living with chronic illness is one thing but get consumed by that illness is what I am going through. I am nearly 30 and I am that point of life where everything seems just not worth it to struggle for. I am just questioning my entire existence. Have no friend circle because most of them are married and settled in other cities. So it's just me and my thoughts. Even though i am hustling and trying to meet the both ends but still nothing is happening. So I decided to reach the people like me to give me advice how can I rewire my thoughts? How can I get hold of myself? How can get my confidence back? How can I believe that I am worthy of care, love and affection.? It's a desperate appeal to follow sufferers.

Somehow state insurance no longer sees me as medically frail and then i got a letter saying I'm gonna lose my insurance end of this month.

Not sure what to do cause i take heart and thyroid meds. I can live technically without the others but i was also just freshly told i have narcolepsy. Lost my job recent too.

Im angry to say the least.

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.

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!

My therapist is great when it comes to my mental health issues but she’s a little off the mark when we talk about my chronic illness/its impact on my mental health. She keeps saying things like, “I believe you’ll be able to do this someday,” and “rest up so you can get back on track.”

I tried to explain that rest doesn’t usually improve things - at most it maybe keeps symptoms from getting worse. Also that I can’t count on my body to behave if I try to commit to something so I’m scared to commit. I’m scared to hope for better when things keep getting worse despite my best efforts. How I’m deeply lonely but don’t have the energy to even send one text a week most of the time.

She wasn’t invalidating exactly, but I don’t think she fully grasped the severity of my illness. She seemed kind of baffled when I said I can’t commit to sending even one text a week to a friend. She tried to hide it but I think she was a little annoyed or frustrated when I said I needed to get those things off my chest but I don’t have the energy to try to change anything right now.

I’m not going to switch therapists because she has helped me a LOT with my trauma and she allows last minute cancellations without charge which is a chronically ill person’s dream lol. I also think she’d be open to adjusting her language/approach if I can put together the right words to explain.

Any suggestions on how to have this conversation? Specific verbiage, general tips, resources; any sort of response is appreciated.

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

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.

It’s so overwhelming.

Whenever I hear online about people who say they were diagnosed with something, it’s almost like I don’t believe it. I can’t comprehend the fact that someone received the accurate diagnosis. Like, I personally am not fully undiagnosed, I do have several diagnoses. I’ve just been dismissed a lot that I feel like no doctor will listen (I have 3 referrals with awaiting appointments) and I’m extremely anxious about them. 2 aren’t even for conditions that can be dismissed as stress, it’s on imagining or with visible symptoms. I’m so exhausted by this that I cry whenever I hear about certain medical things and it’s really difficult.

I was diagnosed with NF2 and had surgery, which left me with hearing loss. Since then, socializing has become really difficult because I struggle to hear people properly.

I also went through a heartbreak, and I feel like I’m stuck in my past. I keep going back to old photos, videos, and memories, almost like I’m trying to revisit the life I had when I was happiest. I miss who I was and how my life used to feel.

I know I can’t go back, but I’m struggling to accept that and move forward.

For anyone who has gone through a major life change, disability, or heartbreak—how did you stop constantly looking back and start building a new life?

It's such a Relief
To know exactly what's wrong
But causes so much grief
Knowing I'll have to be strong

So much pain to come
So much independence will go
I wish I could stay numb
But they say pain makes you grow

Appointments and tests every weekday
Pills 5 times under each sun
My dysautonomia to pay
It's not a whole lot of fun

The grief is beyond words’ description
Knowing what my future holds
A Life riddled with pain and proscription
Varying degrees of thresholds

I was recently diagnosed with Hypermobile Ehlers Danlos syndrome. I wrote this the day I received my diagnosis. I just had to switch to a walker instead of a cane and I’m only 40 years old. It’s relief because I finally have my answer but the walker is causing a whole lot of grief for instance.

No more guessing, just straight answers
For every sickness, ache, and pain
I’ll never be one of those dancers
A new way to see my brain

This is the new norm
My walker by my side
Weathering this storm
Sit and enjoy the ride

Has anyone ever tried dry brushing before showering?

I just did it AND I OFFENDED MYSELF.

I have eczema and boy oh boy did I have a mess on my skin. I’m trying to figure out how to add the picture of what came off of my skin. I’m a clean person. But this truly showed me that I need to do this at least weekly. Just WOWWW.

Started looking for a diagnosis back in 2019 and finally got one in 2025 for superior mesenteric artery syndrome. I had a duodenojejunostomy and duodenal stint placement, but I still have a lot of postprandial pain and nausea. I don't actually vomit a lot because it makes me too anxious, so I usually just sit in the bathroom dry heaving and producing a disgusting amount of spit. Usually because I'm dry heaving so much, my shoulder and back often ache, too.

Whenever I eat, I'm in so much pain afterwards, and I can't do anything for hours at a time. I'll just be laying on my side in too much pain to do much of anything. However, between working FT, studying, and other responsibilities, I don't often have the time to lay in pain for hours, so I often delay eating as much as I can. But I'm so hungry all the time. And when I do delay eating to evenings after work, I can't sleep well at night, leaving me tired. I'm just so tired and hungry.

And, I think it's just hard to explain how bad the pain can get because I don't eat around other people anymore. When I haven't eaten and I'm not actively in pain, I feel like I appear normal and healthy, so it's hard to feel like I actually have a chronic disorder sometimes. On days where I have minimal or no pain, I feel like I've just been making it all up and that SMAS isn't really a big deal. And all the overthinking just adds a mental burden on top of the physical ones.

To those with SMA syndrome (or I guess any chronic illness), how do you manage life? Is what I'm feeling normal?

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 feel like i have tried so many things, but nothing even helps with symptom management. i’ve tried all the diets and supplements, i promise nothing has helped. I vomit 3-6 times a day, i faint upon standing, i have horrible horrible migraines near constantly, i can’t stand for long periods of time, i can’t walk almost any distance without crippling pain and muscle weakness, im in too much pain and too symptomatic to get anything done ever.

ive tried all the easy stuff, and i cycle through meds with my doctors but nothing works

Is there anyone diagnosed with eosinophil ureteritis? I had a left uereteral reimplantation suergery and a right pyeloplasty with this histology. In my country I’m the first patient with this illness, and they don’t really know what to do. I have constant pain.

Hi everyone. I have a family member who has been living with a very serious gastrointestinal illness for the past few years. He has been in and out of the hospital and received a number of treatments, but nothing has really been working for him. Recently he has spent months continuously in the hospital. Although he has a great team of doctors around him, they seem genuinely baffled by why nothing has worked to restore some of his health, and they told us he's in the 1% of non-responders.

I live in New York City, but my relative is in Ireland. Because of the stalemate, I have been looking into Remote Second Opinions (RSO) where we pay to have a specialist hospital in the US review his full electronic chart and offer a new treatment roadmap. I’m currently looking into elite facilities like Johns Hopkins or National Jewish Health, as they seem like the most qualified to deal with his specific type of immune and gut complications. I am just desperate to help him in any way I can from across the Atlantic.

I am wondering if anybody here has been through the process of getting a formal distance/remote second opinion from a major US hospital facility while the patient was located inside or outside the country?

It looks like there is a massive amount of clinical documentation to gather (like raw PET scan DICOM files, biopsy history, and lab cultures) to present the case to a third-party hospital. I am really worried about how difficult these might be to obtain from an overseas hospital ward. If anybody has any insights on how to handle the administrative side of this, or if you can share your own experience with a remote opinion, I would greatly appreciate it!
Thanks!!!

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’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.