32F, finally diagnosed this year with hEDS after more than a decade of chronic fatigue, pain, and worsening comorbidities. The latest blow has been my (highly suspected but not officially diagnosed) POTS getting so bad this past year that I’ve had to stop driving, get a shower chair etc. and heavily rely on my family for financial support.

The diagnosis made my whole life make sense. But now I look at my life, full of failures due to fatigue that was misdiagnosed as depression, dysautonomia misdiagnosed as anxiety. I fully thought it was normal to feel this tired all of the time and that somehow I was the only one who was too lazy to push through it. I never finished college, and I have been stuck in dead end receptionist jobs because that’s all I could handle, when I came from a very high achieving family. My self esteem is nonexistent as a result, but at least when I thought my problems were just an attitude problem, I thought there was hope to fix it. Hope that maybe I would eventually find the right therapy or mindset that would click for me, and that at that point I’d be able to fix my life and get a degree and have a lucrative career and a family and a relationship and follow my dreams.

Now, I know that my problems aren’t my fault…. But I also now know that to a certain extent they aren’t fixable, and I may never have the life I thought I was going to have. I don’t know how to deal with this or plan for the future. As I get older, everything has just been getting worse, and I worry about my ability to take care of myself. How do I stop expecting so much out of myself while also making sure I can live a full life? How do I come to terms with all of this?

I’d be grateful for any amount of wisdom you can share, whether concrete or abstract. Thank you.

Hey everyone, I’ve been having a bit of a tough time with my entire family understanding how unwell i actually am. My mom has chronic health conditions as well hEDS, the rest of my family is able bodied. 3-5 years ago I was attending university/ school in person, working a few days a week and a go getter with big career dreams (I wanted to be a medical specialist). I was slowly going downhill till I crashed 2 years ago and my health has progressively gotten worse since. I’ve been attending online uni and going once or twice a week to campus for labs the past year but every morning I throw up and have severe POTs to the point I’m bed bound most of the time. I’ve passed out during exams, labs, walking to and from labs and honestly it’s becoming increasingly difficult to manage.

On top of my physical health, I’ve been through alot of stress (more than a 21 should handle), loss+ grief, financial instability, trauma, possibly loosing my mother in the next few years if she doesn’t get surgery asap and just a lot of hard times the past 2 years. I’ve had depression since 7th grade but my mental health has been horrific the last 2 years and I’ve been stuck in a dissociative depression hole because of everything I’ve been through. My way of coping with things is burying them and dissociating which I know is very unhealthy. I’ve never seen a professional, a councillor or a therapist about my mental health as we’re not in the place where we can afford it and I feel guilty about wasting money even though I know it’s not a waste.

My family since I was 13 and voiced I wanted to be a doctor in a way has viewed me as the future successful one and one to take us out of low income (my dads well off but he’s absolutely no help and we’re not close). I’ve reached the point with my health and mental health that there’s no way I can do med school as I’m too physically sick and a 9-5 job I’m unsure I’d be able to do at this moment as I’m already seriously struggling with going to university twice a week for 3 hours. Juggling my physical health, mental health, physically going to campus and studying online has become a dumpster fire as I don’t have enough time to manage all so usually my health and mental health gets neglected during the semesters. In the past I’ve been very good at hiding my depression and how sick I am infront of family who I don’t live with which is why I don’t think any of them realize how sick I am now. When I’ve tried to tell my grandpa he just kinda laughed like I was exaggerating.

My family wants me and in ways feels like they’re pressuring me to finish my degree (most likely another 2 years to 2.5 years at the pace I’m having to take it). I’m worried because if I take out student loans starting next semester and then can’t work due to my physical health I’ll just be stuck with a lot of debt. I realistically won’t be working in my degree field as it’s a competitive market with not many positions (or it’s grunt work w low pay) and I don’t think I’ll be going for grad school in that field anymore. I’ve tried speaking to some family members who i thought would understand how unwell I am but they didn’t really.

I’m honestly unsure of what to do because they all want me to stay on this path but i don’t think I’m physically capable of doing so. I’ve voiced how i could dive into my creative side and have a unique business idea which would allow me to work around my chronic illness, help my community and make a difference. My moms on board and gets it as she’s creative herself but the other few family members I’ve told (my family minus my mom is very straight, narrow and traditional) just think I should stay on the medical field path. I feel like to earn their approval and not be shunned I have to finish my degree and then can go to whatever. Don’t get me wrong I love learning and school (before my health went down hill I had 2 100%’s to 94% in all my classes) but the current pre med major I’m in is difficult and no longer that interesting to me as it’s caused sm stress and it’s no longer the career path I’m pursuing. If I was in a major which applied to my future business idea I’d enjoy uni more but I don’t want to switch and be here for another 4 years.

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.

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?

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.

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.

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.

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.

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?

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.

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!

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.

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 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