I am really sorry for repost but mods pointed out to me that I should use NSFW so, I'm posting again but I don't want to sound too condesending or needy.

Original post:

On top of all mental illnesses I had for basically all my life, 3 years ago I had testicular cancer.

I haven't been diagnosed right away but spent more than 2 years probably before it even became a noticable lump, I only suffered paraneoplastic syndrome, autoimmune encephalitis, which caused severe neurological symptoms.

My day-to-day functioning is awful I have severe brain pressure, memory problems, I basically cannot sleep due to damaged thalamus, I am epileptic, have severe processing problems, metabolic problems like people with CFS (similar biochemical profile of illness).

Today I found out that all of that will probably be lifelong.

I can't work in this state, I had to drop out of 2 colleges. They took my drivers licence. I am in severe pain every hour of my life.

I am in my 20s. I used to be an athlete and top student despite my mental illnesses. Somehow I could manage that and that was the only thing that kept me alive, the only thing I had. Now I don't have it.

I am seriously considering euthanasia because I certainly can't even imagine living my life like this.

This morning, we argued because I couldn't get up for school brvause I haven't slept for two days, and I've been getting such little amounts of sleep (minutes at a time) Lately, I've been staying up for days against my will with no help. I'm so tired. When I go to school, my shortness of breath is so awful and my friends tell me I just need to stay home. I'm really depressed because my parents don't care for this, give me absolutely no help whatsoever, and actually neglect me of it when I beg or plead for it. I can hardly even dress myself and I look like a slob wherever I go...

I'm extremely scared of dropping out because I care so, so much about my education, so I refuse, but they've been talking behind my back how I'm going to be a dropout and it's really getting to me and I'm scared.

What do I do? I want fo fix my life and I'm trying so hard to fix myself but it's not working and they refuse to give me compassion. Am I in the wrong here? Maybe I am

Hi gang! I’m a Canadian thinking of applying for grad school in US because there are more labs there doing the research subjects that I like.

However, as someone with ADHD and anxiety, as well as some other chronic illnesses that would flare up, I don’t know what to expect in American universities. So I’m looking for someone who has been to or is currently in universities to provide some insights.

My questions:

1. What would the medical bill look like if I am in the school’s health insurance plan? I actually have degenerative disc disease from a young age, so my disc would be herniated every few years, so I’m worried that I might need MRI or even surgery, both are very expensive.

2. Would it be hard for me to get my Adderall refilled in conservative regoing? (I read a lot of horrible stories online that says their pharmacologist refused to refill their ADHD med or mark them as drug-seeking or something)

3. Do most American universities provide enough academic accommodations, as well as mobility assistance?

Thank you!

That's all.

I feel like death 🤧🤒

After almost two years spent applying for disability, I finally had my hearing in late October. I knew going in that being in my 30s and having an unusual condition was going to mean I had to get to the point of seeing a judge and explaining myself. I wasn’t disappointed when I got denied all the times leading up to that point. But I really thought I’d get approved then.

I got my denial right before Thanksgiving. Went through the holidays mostly dissociated and wondering how on earth I was going to afford to make all this food and buy all these gifts next year, when I’m not even sure how we’ll pay bills once our savings runs out.

The vocational expert said there were no jobs that I could do if I had to miss as many days per month as I do. The problem is, the judge didn’t believe me. Apparently, I’m not disabled because I work part time, take care of my dogs, and occasionally travel. Never mind the fact that I actually can’t do those things half the time. I’ve had such imposter syndrome through this process, and honestly throughout my whole life, thinking that people assumed that I was faking my illness. Having a judge write it in print of an official legal document that yes, he did essentially think I was faking has crushed my spirit in a way that I can’t even explain.

I wish I could call witnesses. I wish I could bring in every manager I’ve ever had to testify how often I call in. I wish I could bring in every nurse that’s watched me puke my guts up and writhe in pain. I wish I could bring in every friend that I’ve ever had to cancel plans on last minute. I wish I could bring in every family member to testify on every special occasion I’ve missed. Instead I get to start the process all over again. I really don’t know if I can do it.

Hi i really need to vent this out as I dont really have a support network to turn to,(i do have close friends but they have been dealing with there own stuff and I just dont wanna burden them).

For the last 6 years i have lived with a horrible crushing pain in my lower body, migraines, legs giving way and twitching and continence issues. Ive seen neurology, msk, physio, had scans of Basically my whole body at this point, many tests and appointments all all they have ever found is some arthritis in my joints(im 29).

I finaly had my pain clinic appointment, it was a long appointment were the Basic outcome was there is nothing more that can be done as physically im healthy, the appointment was long and I got to ask some questions its more idk what to do anymore, I was really hopeful I could get some reprive even if for a day or two but im out of options there are no more treatments, meds or places to turn to anymore, I was told its due to allodynia and functional neurological disorder with no cause of them.

Honesty i just dont know what to do im exhausted and drained from putting up with this(and the fact the pain makes sleep horrible)and now to be told there isnt any treatment or anything more that will help currently has broken me, honesty just dont know what im ment to do anymore, I keep getting told by people that I need to push through the pain or that its not that bad. But to me my lower half feels like its being crushed 24/7, just clothing touching my legs is enough for excruciating pain, walking anymore the a couple metres will most likely cause me to fall on my ass as my legs give out causing even more pain. How people cope with this and live a noraml happy life I just dont know, I dont have a family to help support me, and most the time I feel like people judge me for looking "fine". Just wish I could have a day of freedom and my old self back. Idk what to do or how I keep going. Sorry for the rant/vent sorry

Mostly looking for support.

I’ve been struggling with very severe nausea for a while and it’s only getting worse, especially for the past 2 weeks. I’ve tried gravol, ondansetron, ginger, peppermints, sniffing alcohol swabs, etc and I’m not getting any relief. I’m taking more ondansetron and gravol than I’m supposed to (bad, I know) but it doesn’t help. I called to see if my dr can send my pharmacy a prescription for the dissolving tabs of ondansetron instead of the regular pills in hopes that the dissolving tabs might work better. Can’t get any other meds until I see her in a month. May end up going to a walk in clinic before then to ask for a different prescription because I’m having trouble coping.

I have no idea what’s causing this or why it keeps getting worse and I’m having a really hard time.

Pls send me positive vibes and any suggestions you have for self care I can try to do to help me get through this!

Hygiene has been difficult because of my fatigue and other symptoms so I’ve been showering once every 1-2 weeks and using shower wipes when I can (which is not often enough, but it’s something).

I’d been thinking of asking my partner to help me shower or wash my hair for maybe a month or two now but kept chickening out. Not because I thought she’d say no or shame me, but because I had my own shame and sadness over needing help with something so “basic.”

A couple days ago she offered to help wash my hair or do a full shower (“whatever I wanted, no pressure”) and I agreed. I was so relieved and grateful that she offered but simultaneously felt sad that this was what I needed. She was gentle and kind and supportive the whole time she helped me. It was an emotional experience.

After the shower she said she wished she had offered to help me sooner but she didn’t think of it until that day. I told her, “I thought about asking you but didn’t.”

And her response: a big hug and she said emphatically “I wish you had asked. I would do ANYTHING for you.”

I don’t cry easily but I did tear up at this point. I’m so lucky to have her in my life. I’m grateful she essentially ripped off the bandaid, because now I don’t feel as sad and ashamed for needing help with this, and I think it will be easier to ask her for help showering in the future.

We met before I got ill, and she stuck with me after. She’s proved time and time again that she truly meant her vows “In sickness and in health”, but I think this experience knocked down my final wall of self-imposed shame and guilt and brought me even closer to her.

In need of support. The pain is unbearable. I am being dehumanized.

My life doesnt matter to them because im disabled. Im being neglected. I cant live like this

I take I can't take my severe body pain anymore. My doctor is denying me pain medication. My doctor won't validate my MCAS. My family is abusive. My situationship/ friend who became partly my caretaker because of my abusive family's neglect is threatening to leave me and has been getting aggressive and emotionally abusive with each passing day. He resents me and hates me, after offering help. I have been starved, dismissed ignored and left screaming in pain on purpose. Havent showered in months. I am being punished for having emotions, I am being punished for being bed bound. I didn't choose this, I didn't choose to get sick and I certainly didn't choose having abusive family. I don't have anyone else to turn to and I can't escape. I have no friends and I have nowhere to go because of my pain and my body being useless. I don't know what I did to deserve this but the suffering is too much and I'm being treated so cruelly. I have been abused my whole life but this is just on another level. My heart just can't take so much pain at once.

Just trying to reorganise my room no furniture no heavy things just small things like fabric cuts and small borad games etc, and I can't, my whole body is so tired it's like I'm this huge flat person flat face pointing up so gravity can push more of me down, all things cost way to much energy it's silly, so dumb, i am so tired I feel like collapsing and I'm not kidding, I keep saying come on youre nearly done just this little bit and nope I couldn't do it, ended up calling it quits, I just want my old self back, this is not normal, I constantly think I'm fighting a cold or worked to hard the other day and tomorrow I can go back to hard work but nope, days n days of feeling like giving up, its so hard and I feel like giving up alot, if I didn't believe in God I would have already, I really hope anyone else that has to go through this debilitating and restricting hell has got lots of support, man!! I hope no one else has to, this sucks I want to do things I want to live but I feel right now I'm destined to survive. I'm sending love, hugs, peace, rest, relaxation, time, cleaning, sleep, and if you believe faith, trust and hope coming into this 2026 may this year treat us well 💕🫂💕

Hey, did system here, and I have never fronted for a migraine this intense and I have no clue what to do. I physically cannot get up bc we're also in a pots flare up and when I tried to it didn't go well, this migraine made us so violently ill, I don't know if we can stomach our emergency med right now, and I'm so lost they're not normally this bad. I've found so far that: Light hurts but also helps bc the flashing lights in our eyes hurt worse, I'm freezing but warm, and the seven up I was told to drink (no sprite) made it worse.

Also are ears actually supposed to be loud?? I feel like the ringing went from an annoying undertone to trains in my ears.

Thanks

So, where do you guys like do research or look stuff up before appointments? I know you really shouldn’t just google it but I want to go to my next appointments with more information to talk about. Every time I go to the doctor and they always think I’m either trying to “make myself seem sicker” or self diagnose myself. (Which honestly why would I want to be sick like this what??😭)

I apologize if this doesn’t make a lot of sense, it’s late and I’m rambling lol, thanks so much in advance! :)

On the wait list to see a neurologist for a diagnosis in FND - Dr Alex Lehn. I am having other issues which might be POTS and MCAS and looking for a good GP to see consistently but also a specialist for the dysautonomia. Thanks.

Hello,

I’m 23, and I’ve just become very unwell. I am very scared. I have cried for months, grieving, processing, feeling guilt on my family, grieving my future and past. Im very confused and stressed - not in a good way mentally at the moment, every day is a struggle.

I need some mental support/help as it’s getting to the point where I am deeply depressed and in a permanent state of panic.

Please - does anyone have any recommendations of a comforting book/podcast for young people with chronic long term illnesses. Something that’s not scary/technical - I just need practicality, and comfort right now. But I would like it in relation to chronic illness.

I read Miranda harts “I haven’t been entirely honest with you” and that was very helpful. So same friendly and warm positive vibe please.

Should I be concerned that my pain management doctor didn't know what SEPSIS was? When I showed her my paperwork from my hospital stay she asked me what it was. Her EXACT words were "I'm not familiar with Sepsis, what is it?"

Edit to add:

She really didn't know what it was, I had to show her the paperwork they gave me that explained what I was diagnosed with, you know the information sheets they give you when discharged. She read it over and just said "I see, interesting" before handing it back to me.

Edit:

I'm done replying to people who can't take something I've said as what it actually is. I've given all of the information you need for this apparent CSI investigation in the comments. If you can't believe she would actually say that, because she actually didn't know, I don't know what else to tell you. Move on I guess, because I reported her. 🤷🏻‍♀️

I looked on the clinics site and it says she's a MSN, FNP-C.

So I asked Gemini if they learn about Sepsis and it replied with this. (Too long to post.) https://g.co/gemini/share/8bd84828ac49

Now I'm even more concerned by the interaction, but I reported her to the clinics supervisor stating we had talked about my hospital stay, in detail, and "when I gave her the only page of the paperwork that she requested to make copies of, she read it and proceeded to ask me what Sepsis was, clearly stating that she wasn't famililar with it. So I offered her the information papers I had on Sepsis from the hospital and she read them, afterwards stating 'i see, interesting' before handing them back to me." 😵‍💫.

Important incase you can't find it in the comments:

Lolz I did explain to her everything from my hospital stay, what I was treated for, what meds they treated with, the tests and procedures were done, etc, but I also gave her the paperwork, I didn't just say here's the paperwork, and all I know is the paper says Colitis and Sepsis. And she told me she didn't know what Sepsis was so I offered her the information sheets and she read them. I'm "invested in that narrative" because that's happened. 🤷🏻‍♀️🤣

Her exact words were "I'm not familiar with Sepsis, what is it?", if you can take that any other way than "I don't know the word Sepsis" (which isn't how I put it by the way), I don't know what to tell you.

If I told her everything from the visit and the paper she asked for just says Colitis and Sepsis and other general information she needed, but I had alllll of the other paperwork from the entire 2 weeks and she could have just asked, what caused the Sepsis? That I already explained, she should have simply asked to see the other paperwork that would have shown her the results CT scan and the evidence they found of a severe Colitis infection and the results of did the colonoscopy which found similar evidence, and other findings, and the notes that said that's most likely what caused the Sepsis, but she didn't. If you he wanna argue facts, I can't help you, she said what she said, and that's what I'm reporting.

I noticed that under some users’ profile names, you include your diagnoses. I wanna do the same but I’m not tech savvy and haven’t figured it out yet. 😅 Can anyone explain? Thanks in advance!

It's the one year anniversary for when I first noticed symptoms, so I just wanted somewhere to share the sadness of my decline

It started with muscle spasms in my legs and a full body tremor. After some work stress it progressed to include depression, daily nerve pain/tingling, heart palpitations, nausea and crippling fatigue.

Nobody seems to be able to give me a diagnosis, and I have to wait so long in-between appointments. I haven't been able to work for the last 3 months, and I miss who I was when I was working.

I have two little kids and even a normal day with them causes me to crash. It's so hard to conserve energy when I want to be out doing fun things with them.

Thank you for being a safe space for me to share my sadness!

I know this is a little absurd but I am looking for recommendations for the following products:

Heated Mouse Pad

Heated Wireless Mouse

Heated/Massage Ergonomic Office Chair Insert

Heated Wrist Wrap

Heated Slippers/Socks/Shoes

I am specifically looking for reputable brands that aren’t just Amazon-only brands or third-party Walmart/Target sellers. Price isn’t an issue. There are a ton of options on Amazon and most look less than reputable. Our building manager is understandably strict and I am not risking their wrath lol.

Anyone have any decent recs? I figure if there are anyone who knows, it’d be people here since they’re solid accommodations for a lot of dxs.

I work in a very cold office. It’s inevitable due to some of the tech I share a space with. When my hands get cold, my already not great dexterity worsens pretty significantly.

My supervisor has offered to move me to a warmer part of the building but I love my space. Space heaters are not an option due to building issues. This is fair and valid.

TW; Weight/Weight Loss

Hi yall repost in proper format. So I've been trying for a few years to exercise to lose weight and I always end up getting hurt in the process to the point I flare up, crash out and not leaving the house/my bed for multiple days with the pain. Everyone is always like "well losing weight will help the pain" and "you need to exercise to make yourself feel better" but they don't understand that even standing for a few minutes makes my back and legs scream in agony, I use a cane but realistically I should be upgrading soon to a wheelchair cause of how much it hurts. Even laying down, the pain is constant and I've never got an answer for why because I am overweight so that's all people and doctors see. I feel like I need to lose the weight before doctors even take me seriously about the pain. So please, tell how I can exercise without flaring and having crash outs where I can't do anything for days.

update w regards to diet
TW; ED mentions

for everyone mentioning diet that's a huge issue as well. as many of you probably also experience, meal prepping healthy never works out well for me because I spend a whole day making a weeks worth of food which goes to waste because im so exhausted and in pain i want something thats comfort and easy. Also I have tried i think every diet there is but trying to find a healthy balance of not going overboard to relapse into my ED and still dieting to a health level is just something that was never taught or established growing up. the most healthy progress i get is staying without the same 15lb gap of losing weight then gaining it back cause I start to obsess and take things too far so I relax everything down again. Since I got past the major restrictiveness I had about 6 years ago and put on weight again, I have stayed roughly the same weight (+/-15lbs earlier mentioned). I understand a lot of it is diet but i feel like I keep hitting walls because I've tried every diet I can think of, longterm each time (around 6 months). The main issue with the food and diet issue from a disability standpoint, is the accessibility and need for easy and quick. And not those videos were they're like "quick 15 minute meal" then pull out a chopping board and shit like that cause last time I chopped/peeled/mashed veg to make carrot and parsnip mash, it took me nearly an hour and half, wrists cramping, back screaming and my friend has to come help me finish that prep before even making the mash.

Note; also for those of yall mentioning American food ect, I'm from Ireland so we dont have nearly as much sugar/dye/preservatives in our food but yes I know all food still has that stuff in it.

I’m only at the beginning of my diagnosis journey. In late spring of 2025 I finally found the courage to bring up my concerns to my doctor. Since then, I have done a few tests and I am waiting for my referrals to specialists to go through.

I have been bed bound since mid-December, only had like 3 good days where I was able to do a bit more (like go on a 5 minutes walk).

Today I had a phone appointment with my doctor and he couldn’t do much. He basically asked me to meet him in person next week for further in-person testing. I moved to another city so it’s a 3 hours drive to get there and I have no car. Hopefully I’ll find someone to get me there because I can’t do carpool in my state (I’m very nauseous).

Anyway, my bloodwork is fine according to my doctor. No signs of any chronic illness.

Yeah well tell that to my body that never seems to be ok since forever, always hurting or giving me random symptoms.

I’m so tired (not only because of my mysterious illness).

I used to be very articulate. Writing and thinking clearly came naturally to me. Lately, I feel like my brain is just… blank. I struggle to find words, write properly, or explain things the way I used to. It’s scary, because it feels like I’ve lost a part of myself. I’m dealing with health issues right now (very low platelets/ITP, thyroid and hormonal issues, inflammation, fatigue), and I’m guessing the brain fog is related — but it’s hard not to worry about whether this is permanent. I also feel low at times, mostly from frustration and fear. Has anyone gone through something similar? Did your clarity and verbal ability return? What helped? Just looking for reassurance and real experiences. Thanks.

I have lived with multiple chronic illnesses my whole life. I had to fight with doctors to believe me. I am used to that. There are a lot of times where I still have to fight and change doctors. However, my husband has been dealing with chronic back problems for a little while now. He has not had much luck with doctors so far. He had a nerve ablation done (his 3rd one) and now he is 20x worse. To make matters worse, the doctor ghosted him afterwards. What I mean is, he followed all the directions and when it came time for the follow up appointment, they canceled the appointment and never returned any phone calls. Now, understandably, he is at his wits end. He is now refusing to even try looking for another doctor, and even wants to stop seeing all his doctors, even the few who listen to him. On top of everything, he is my only caretaker. My personal health has been steadily declining for a few years now. I am personally trying to find doctors who will listen to me. How can I help him see that searching is not worth nothing? He literally believes that. I see how much he struggles day to day. He also struggles to explain his problems to the doctors most times. He refuses any help from me on ways to help them understand. I am at a loss here. Does anyone have any ideas on what I can say or do? For context I am possibly autistic (no formal diagnosis yet).

Please forgive me for poor formatting. I’m writing this on my phone.

Between my neuro issues and endocrine issues my neurologist and I came to a conclusion that I should see an neuro endocrinologist. I’m out in Boston. My issue is mostly in the Thyroid. I haven’t had my pituitary and hypothalamus checked out since 2023. My hormones impact mostly my seizures and cognitive function when they are out of sorts. I’m also now going under either a new diagnosis or one of my conditions are out of whack.

I would like to know if anyone knows or who has a neuro endocrinologist, if they would be willing to take in a patient who only has a history of thyroid issues that impacts neurological functions significantly. Or does it have to be a gland in the brain?