r/ChronicIllness

I have had an undiagnosed progressive chronic illness for about 2 years now. I started having symptoms in March 2024 and became completely disabled by it (unable to drive or work, fully housebound, partially bedbound, lost all of my hobbies and friends) in April 2025. I started going to doctors in April 2024 and I have been to over 200 appointments. I haven't felt like I've been taken seriously at a single appointment despite not being able to work and losing everything. I started having my husband with me when I lost the ability to drive which helped a little, but I'm still not treated with much care or concern. We are both extremely frustrated and I continue to decline. The only thing I've been diagnosed with is 'migraines' despite my list of 100 symptoms that affect all parts of my body. I've tried dozens of migraine treatments and none help, and my symptoms don't align with migraines at all in my opinion. I've tried to voice this without seeming argumentative, but I'm just dismissed every time. I've tried getting second, third and fourth opinions, but it feels like everyone is following the same script or procedure. Has anyone else experienced something like this? How did you handle it?

Hi All, I hope it isn't disrespectful to post here as a caregiver; there was another post recently by someone asking if that was ok and it seemed to be welcomed. My question is mainly if anyone who has previously been a teenager dealing with chronic pain and nausea could advise me about how much to push my 17 year old to make "lifestyle choices" that could potentially help her vs. respecting her right to fester in misery. [I hope that joking about our struggles a little bit won't upset anyone; our family culture has a fair amount of hyperbole and graveyard humor, it helps get us through some of the hard times.]

TW: SI, SH, eating disorder, substance use. Also it's really long! Sorry!

I'm desperate to help my kiddo feel better but progress with getting any sort of medical diagnosis or treatment is nonexistent. Her symptoms include chronic pain that moves around in skin, muscles, joints; head, back, hands, legs, stomach; chronic nausea every day for over a year now (somewhat helped by Remeron), and now menstrual bleeding 3 weeks out of every month accompanied by terrible cramps. We're pursuing an endometriosis diagnosis but nothing is showing up on any scans so far; i've researched nearly all of the chronic illnesses I've ever heard of and can't find anything that exactly matches her symptoms. We have an appointment with a rheumetologist next OCTOBER but nothing in that arena even sounds likely except maybe fibromyalgia. I feel completely hopeless and [aside from advocating for her medically and trying to be there for her emotionally and making very few demands on her and giving her a ton of freedom to do what she wants for fun and distraction] I don't know how to help her.

The main thing I'm struggling with as her caregiver right now is that she spends nearly all of her time in bed doomscrolling on her phone in the dark, except to go out and party with friends. I'm not trying to say that her symptoms aren't real; I know it's partly that there is a psychological component to how crappy one feels, and partly that she's willing to push through pain to do what she enjoys whereas there's zero motivation to push through it to do boring/difficult/obligational things.

She smokes cigarettes (gets out of bed every hour or two to go to the porch) and drinks alcohol when out with friends; I'm not happy about this but in light of past struggles with more serious substance use and behavior issues, these vices (and the expectation to keep up with online school) is the compromise we've landed on. We get along well, as long as I make no demands of her. If I try to limit phone use things turn ugly very quickly, ranging from threatening suicide [we've been on quite the mental health journey and I don't think this is an active risk at this time] to pleading that she needs the distraction from pain [hard to argue with]. I just feel like the doomscrolling and smoking and never getting out of bed to do things are probably making the pain and depression worse.

She will not prepare food for herself, due to her eating disorder (ARFID) she would literally rather starve, so I bring most of her meals in bed. Sometimes she will agree to do a chore or something "later", but always feels poorly when the time comes. She lives to socialize and feels well enough to go out 98% of the time she has the opportunity. She sometimes does a short workout routine, but won't go for walks or errands with me (or alone). She won't go outside except to smoke or socialize (which entails many hours roaming all over the city on transit, going to raves, etc. Yay! I'm glad she's having fun! But it's either that or bed, nothing else). She has no interest in taking on her own care whether it means learning about a medical condition a doctor has suggested, feeding herself, or learning how to do life things. She wants a surgery or a pill to fix her pain (so do I!) but won't research anything or consider any of the lifestyle changes we hear so much about: sunlight, yoga, reducing screen time, etc. and gets annoyed when I ask her to consider them.

She does talk to her therapist weekly, but it seems more like a sympathetic ear rather than working on any goals or anything. And though this is all super long (sorry!), I want to mention as background that we had a major mental health & behavioral upheaval in early adolescence (couple years of SI, SH, drug use, school refusal, and then a major therapeutic intervention.)... so we're doing better now overall. The last few years have focused on recovering from the upheaval (quit my job to take care of her, got her some eating disorder treatment, moved for a fresh start, tried various schools, now doing online school because nausea and pain made in person impossible.)

I know I can't make her do the "healthy" things that I (and the entire medical establishment and alternative healing community) believe might help her to feel better, at least a little bit. But should I push harder for that, knowing it might turn our harmonious relationship into a combative one? She is extremely stubborn and pushing any harder than I already do will certainly cause conflict.

Thanks to anyone who made it this far! I appreciate your time and insight.

This is kind of a lot to read, but I just want to be understood one time so I can stop looping if you could please take the time to read this. I would really appreciate that. I don't expect pity or my situation to be fixed.

This was originally wrote to my family.

For context this is my 3rd year if not longer in complete isolation. I research all day every day because I still haven't found my answer and no one is coming to save me. My everyday is spent making money online / researching. I made tons of money online, but never enough to heal and I have endless bills that pile to live (just like everyone else)

I haven't been able to fall asleep since 7-10am no matter what for years on end. 75% of people with ADHD have delayed sleep phase disorder. (It's not something you beat)

I was offered a $10,000 a month job if I could wake up at 8-10am (guaranteed)

I did multiple all nighters in a row trying to fix it (4-5 days couldn't sleep each day)

I already have chronic pain. And horrible horrible sleeping issues so I lay there for hours.

Next thing you know my memory foam bed that's been hammocked and uneven for months gets to a point of pain or I can't bear.

So I buy a new mattress. It's not at all supportive enough (laying on the flat floor) but I'm like whatever i'll throw it on the frame and I'll figure it out. I just need to sleep a few days.

My frame (that's most likely actually the thing that ruined everything) destroys that bed and makes it completely uneven and unusable

Then I order another mattress after about a week or two of doing the return and getting the money back, etc.. It's a long process... and that one is AWFUL but adleast it's firm enough so I throw it on the frame right away (I had no clue the frame was doing all this)

Days later that bed gets so uneven to the point I can't even lay there a few minutes it hurts my back so bad. Ignore it and keep trying to sleep.

It's starting to get hot as hell daily (summer) and the humidity is getting crazy all this mattress money was supposed to be spent on either a dehumidifier or an air conditioner (preferably an air conditioner so I could do both)

I email all staff trying to get a new ac it's ignored.

Then I check my kitchen and there's black mold everywhere on the baseboards. I report it... they replace the sink, and this amateur has a pipe burst for hours (I used all my good towels to clean this up) but the pipe had bursted under the floor.

Now my carpet with mattresses everywhere is soaking wet and the tack strips and full of black mold aswell.

It's over 60° humidity but I read online from some dumbass that if the dew point is under 37° you are good to open your windows despite high humidity and it made some sense and I was desprate for clean air.

So I'm legit leaving my windows open for a week and 80% to 90% humidity

Next thing I know I'm waking up seeing mold EVERYWHERE on my dressers, on my carpet, on my walls, on my clothes. (keep in mind I moved into this unit mold free to heal from mold and kept it mold free for 11 months, and that's one of the biggest cause none of this needed to happen)

Now now everyday I'm looping do I get a clean ac, do I get a new bed, what do I do.

I decided to get a new bed still not knowing my frame is screwed up and it's actually a decent bed so I throw it right on the frame and try to sleep days later the same issue. Same day I spent all my last money on an air mattress that was meant for an air conditioner (so I could buy both) because I'm like if I at least get sleep, I can fix every other issue and coordinate it in the day and get that job

The air mattress is so hard and I'm laying down all the time I get a pilindinal cyst. One of the most painful things you could ever lay on because id been trying to sleep for weeks at this point going 4-5 days without sleep regularly.

I decide to sleep anyways screw it. It's so painful I start getting 2-3 hours of sleep a night but whatever adleast it's sleep.

Then because I'm laying on this air mattress all day every day it starts to get uneven just like my other beds although it's on the floor because that's just how they work.

So at this point the humidity is so high I've been needing to run my moldy AC with the window shut with mold on the carpet, mold on everything I own mold on the baseboards and my toliet starts leaking...

You can smell gases, dehydrated piss smell all day everyday all sorts of shit... thought it was just me cause I'm not getting sleep so I waited a few days and my carpet becomes increasingly wet and I'm crazy about Mohr so I sit with fans on it every day all day, scrubbing it with towels using hair dryers.

I call maintenance and they replace the wax seal and call it a day as there's tons and tons of black mold under my toliet.

Now I'm going (after a week of barely 1-2 hours a night) almost 9 days without sleep.

I say HELL NO and call western mental health and get on ambien almsot same day.

After a week or two of Ambien melatonin, Tylenol p.m. and other things, I'm sleeping either 1 hour a night or none and my cyst is getting more painful daily. I'm also cautious of the air and breathing because there's no room for the air mattress in my room unless I were to take apart my bedframe.

I finally decide to after days of not sleeping and find out that's most likely the problem after I'm now 3 mattress deep and 1 air mattress.

So I decided to call Western Mental Health for an emergency appointment and get on Seroquel... now I'm sleeping 10-16 hours a day on the painful mattress but waking up hundreds of times a night and no matter how much sleep I get I wake up unrestored. (No matter how much sleep)

So I stopped taking it for two days and I sleep three hours both times after taking tons of Ambien melatonin and Tylenol pm cause at this point I can't even smoke weed im so starving at night because of hunger loops (starving to the point of migraine every 30 mins because my brain is running on glucose and food as fuel not sleep energy)

I stop taking it 2 days sleep 3 hours and it's wayyy more restorative. But I've been getting no sleep for practically two months so I keep taking the Seroquel to force sleep

Now I'm sleeping on the uneven bed for days on end not sleeping and I do everything from pillows under it towels, whatever to try to keep it level because it's not putting as much pressure on the cyst.

Now I been up for so long grelin and leptin hunger loops are keeping me up no matter how much I eat. So I keep spending hundreds on EBT just to stop getting hunger migraines at night so i can just sleep and fix this all.

At this point, my entire family is calling me princess in the pea and doesn't believe me and the saying I'm just OCD looping.. but no one is coming to save me. I'm already super mold sick. I'm not sleeping for days on and everything's obvious. I'm telling the truth.... and it gets to a point they just shut me out for hours, don't open the door for days (already been in isolation for months and months and months) and already don't really believe my chronic pain from the start.

I start going overthere daily saying I need help I need help I can't do this alone. And my mom calls a welfare check on me cause it gets so bad. I need a shred of empathy. I tell her I cut myself so she would come over and see the situation.

She says come out I wanna hug. I look through the people and see a ton of cops. i'm humiliated because I went to school with two of these people and I know all the other cops and they know me.

Whatever I get over that... and now no matter how much ambien serquel Tylenol p.m. and ambien I take I have such a short window to sleep because I'm starving 24/7 (hunger is worse then almost any pain)

I'm in pain 24/7 already but it's exacerbated by what I'm going through and the bed x100000

I'm super inflamed and every day it makes the cyst worse and worse and I can't even find a semi comfortable position in bed.

And now I'm out of position where I haven't had restorative sleep in weeks, haven't left my house in over 12 months and before this 2 years... have missed my birthday, Easter, friends, my 10k a month job, and many other things... and I'm so mad at myself for opening the window and causing more mold I start to lose every bit of self love id ever had for myself, my relationship with God, and my trust for any of my family.

Cause at this point my entire family is denying my reality or using it against me, my brother had physically picked me up and dragged me out the house for saying I need help over and over, rumors are spreading about me having a welfare check, and the sleep I'm getting on Seroquel is less restorative than staying up multiple multiple days in a row despite sleeping till 6 PM every day 10 to 16 hours...

Now if I get off the serquel since I'm waking up at 6 PM my sleep schedule is entirely ruined and I'm gonna be on a complete night schedule not able to fix anything so every day I still have to stay up to fix my schedule and get on track.

But with delayed sleep phase disorder... or even years of the same habits you hit a second wind that keeps you up till your window (7-10am) no matter how many days you been awake, and if you fall asleep before that you will get non-restorative sleep, and wake up multiple multiple times each night, and every time I wake up, it takes me forever to fall back asleep because the bed is painful and I'm already in pain and I have a restless mind.

I start taking so much sleep medication.

Now 2 weeks in i've taken all my sleep meds, which just left me where I am now extremely un restorative sleep, no money, and no sleeping meds, can't even keep my eyes open a tiny bit at 2:19pm sleeping all day every day and everyone just thinks I'm depressed and no one's coming to save me.

What would you even do in the situation? I feel trapped in every which way.

I finally complained a ton to Amazon and they gave me $150 credit and $130 refund on the frame and I have $100 bucks to my name.

So at this point I've spent most my EBT, all my money, not sleeping whatsoever, basically on a complete night schedule talking to hotlines all night every night, and feel completely powerless well everyone's denying my reality and telling me I'm dramatic.

This whole entire time I've held my faith and not blamed God once but why did I have to lose everything all this trauma with my family that never needed to happen? I lost the perfect job. I lost the perfect department. That's right next to family right next to friends on a golf course and then the only area of town that's not depressing cause it's full of greenery.

The only solution I can think of is buy a new frame and buy a new mattress but that sucks because I'm just moving it into a moldy area while using a moldy AC and this will be my fourth mattress and 3rd frame (I moved with one but bought a new one because I lost the screws whilst moving apartments.

Imagine going through that and nobody believes you every once deny your reality telling you, your actual physical pain isn't real it's paradoxical insomnia and you're sleeping. You just don't remember and you're just like princess in the pea.

If you have a better solution, let me know.

The only thing I could think of is getting an apartment somewhere else, but then all that happened for no reason because what do I do just move everything moldy in there and contaminate that place? What an impossible situation to be in.

I'm cornered in 2 months of basically no rem sleep, chronic pain no support system, being denied of my pain, days of complete complete isolation, a pilidinal cyst, no ability to get control back, and I call my grandma to pray for me saying I wish I could get my power back. I don't know why God's feeling this and she gives me the whole spiel about how God never leaves and you just want power over God, I'm not gonna keep picking up these calls, the only thing keeping me sane and happy was my looks.. now I've dropped a ton of weight from 156 to 127 massive eye bags and my teeth are DESTROYED from eating every 30 minutes and brushing right after and when I tried to not brush after it got even worse because my mom was saying it's cause you're brushing right after which she's right about, and not a singular pain free place to lay my head at at times.

I’m in so much pain right now and idk how to help it, I’m currently in the process of getting whatever I have diagnosed (but as many of you know, that’s a long and tedious process) I experience severe nerve pain that ranges from dull radiating aches to sharp zaps of pain that feel like I’m being electrocuted, and it’s been effecting my hands a lot recently and as such I’m finding it hard to do anything with my hands. I don’t want to take weed gummies too much and become reliant on them but I also desperately need SOMETHING that will help because I feel useless and I use my hands for everything, I don’t care how out there the idea is I’m just in need of relief

Tags for safety.

CWs: malnutrition, unintentional weight loss, body image, medical trauma, strangulation, surgery/ its effects on the body, descriptions of pain/injury/serious illness, death/fear of

I saw a motility specialist for the first time a bit over a week ago for my refractory gastroparesis. He basically told me that I needed to be admitted immediately to get a surgical feeding tube. I didn't even have time to go home and pack a bag, just straight to the ER.

On the first day, a tech told me to transfer from a wheelchair to a phlebotomy chair, ignoring the fact that I was on oxygen. The cannula hose was too short to allow the transfer, pulled me backwards, and I took a bad fall. I also learned that day that I'd had a prior heart attack.

On the second day, I got a roommate who spent the entire day/night praying at a *scream*. I didn't sleep at all.

On the third day, I was NPO and supposed to get a stress test, but my potassium was too low. When pills didn't get it up, they tried to put it through a standard IV. It literally burned my vein. I had to get a midline. I got a migraine so bad I was literally in tears, while my roommate had to use an interpreter service that also operated at a scream. This was the better part of the day. The stress test was canceled, because they eventually had to treat the headache. This meant I had to consent to a cardiac CT-- and I get anaphylactic reactions to CT contrast-- if I wanted a chance at getting cleared for surgery the next day.

That night, I got my first meal at dinner. It was pure liquid. It still caused blinding, screaming, crying, dry-heaving pain-- the likes of which I've never experienced. I genuinely thought I had a blockage. Later, I got my breathing treatment and my heart rate went to 210. I called for a nurse, who immediately called a code. Turns out I was in AFib with RVR. The code team got there, took one look at me, and then realized my roommate was in full arrest. They spent the next 14 minutes coding her with the curtains drawn. I spent them wondering if I was going to make it long enough for them to finish. I did. By the time they got her back, my rhythm had converted to trigeminy, which is a precursor to VTach. They said in no uncertain terms that if it converted, I probably wouldn't make it. They started working very quickly. I was genuinely terrified. In the middle of this, one of the doctors started questioning my EDS diagnosis. Because, you know, sure. Everything they did worked though, and I was transfered to a ward that was one step shy of the ICU and placed on strict bed rest. I spent the night using a bedside commode--frequently, since they'd pumped me full of fluids. Then they decided to hold my POTS medication. My blood pressure wasn't low, but it wasn't high, so they held it.

On the fourth day, they gave me more steroids and IV Benadryl ahead of the cardiac CT. Then they took me off bed rest and had me get up to do an antiseptic wipe down. I twisted my ankle, badly (IV Benadryl is NOT like the pill form, as it turns out, and EDS makes it really easy for me to hurt myself). I told them I'd hurt myself, and they ignored me. They came and took me for the CT. I had a panic attack. They said, very brusquely, that no one ever reacts with the pre-meds. I was still scared. They injected the contrast and my throat started to close. They said "it should have been fine." It wasn't. Around 2, cardiology cleared me for my 4pm procedure. At 5pm, the nurse came in and said I've been canceled: cardiology took 2.5 hours to write the note confirming what they'd told me. By then it was too late. Even my nurse lost his shit on them. "It's cruel," he said. He was right.

That night was pretty similar to the night before. Dinner. Pain crisis. Turns out, the protein formula they were giving me had an artificial sweetener in it even though I'd told them multiple times I was allergic. Breathing treatment. Cardiac events. Funny enough, it doesn't get less scary (though not having another code happening at the same time does help). I started having adrenaline dumps because of the held meds. I didn't sleep at all that night. Not a single minute.

On the fifth day, the internal medicine doctor came in, took a look at my leg, and told me there was probably ligament damage. It would never be spoken of again. He also told me I'd be taken down for surgery at 9:30. I called my people to tell them to hurry up and get there, because we'd thought it was going to be 1:30. I started having... bathroom issues. The kind that are really inconvenient when you're NPO and also hooked up to six pieces of equipment that you have to disconnect from before getting up and you have a damaged leg. My people arrived. 9:30 came and went. 1:30 ultimately came and went. They came for me at 2:30. I was exhausted and terrified and furious. The surgeon said it wouldn't hurt much, it was "just a little skin incision." I was skeptical. They wheeled me in, and the nurse pressed the oxygen mask over my face like she was trying to strangle me with it. She also started pressing down on my throat?? My last thoughts before going unconscious were that she was going to accidentally damage my trachea with the force she was using.

I woke up screaming, crying, and 90% unable to see. They pushed the heaviest-duty pain medication they had, and it did absolutely nothing. (Thanks EDS). They immediately wanted to move me, because I was the last procedure of the day and the nurses wanted to go home. They picked me up and I almost went unconscious.

Back in the room, I got two more different kinds of medication, and in combination the three took the pain from a 10 to an 8. That was enough for me to be able to realize I couldn't see. "It could be a side effect of the sedation, or it could be a stroke." They had to take me to CT to clear me of a stroke. The pain of that was indescribable. It wasn't a stroke.

I once again didn't sleep. The pain was too severe.

On the sixth day, they wanted to take me off of pain medication. My people advocated for me, and managed to get me one more day. I couldn't even make it to the bathroom. I could barely speak. I still couldn't see. They made the call to transfer me out of the step-down unit and back to the regular ward, except they chose to do it by wheelchair instead of on a cot. Since they'd started running feeds, this was a two-person job. The person responsible for my IV/feed pole kept getting out in front of the wheelchair and literally dragging me by the tube. She nearly ripped the tube out of my body four separate times. I was barely conscious by the time I got to my new room.

On the seventh day, they did take me off all pain medication, less than 48 hours post-op. I still couldn't stand up straight or move without assistance. The pain was made immeasurably worse by the mishandling the night before. They didn't care. They also weren't anywhere near discharging, not for any medical reason, but because the logistics of arranging the supplies were apparently beyond figuring out.

On the eighth day, I was supposed to go home, but they told me it would be "several more days" while they waited for the supply delivery. Given that I was and am able to eat and drink by mouth, I told them I was going to wait that several days at home, where I can sleep and feel safe and not be traumatized. They said it would be AMA, but nothing else. I said fine, and signed.

It was only once I got out that I saw in the discharge papers that I needed to flush my tube every 4-6 hours to avoid clogging-- which they didn't give me the supplies to do. The syringes they had, that wasn't part of the supplies they had to order. That was a choice. So I had to get that urgently elsewhere.

Then I learned that they canceled the supply order. They said they weren't going to, but they did. If they'd said they were going to do that if I left, I obviously would have stayed. But they lied, or they changed their minds, or whoever spoke didn't know the policy.

So now I have a tube, no orders, and I have to wait until I see my motility specialist outpatient to even start the process of getting the necessary supplies.

Oh, and loads of excess trauma. I certainly have that.

And is some of this on me? Yeah, absolutely. I own that. But I was exhausted and no longer felt safe there, and I was told everything would get done. I acted on the information I had. I don't know.

So, yeah. Here I am. Where do I go from here? No earthly clue. What a mess.

About 5-6 years ago I decided to get off a medication known as Valium, getting off the medication fucked with my gut-brain axis and causes constipation and now lack of appetite that won’t ago. Before I got sick I was a body builder with an amazing body! I was also a stripper because I took care of my family and went to full time college. After getting sick I had to stop working and leave my stripping days behind. The past 5 years of dealing with this issue has been hard, been to multiple doctors, multiple test, everything is negative, I even did the SIBO treatment twice even tho I was negative for it. I had a fiance and he broke it off with me because he said that he could tell my job and my illness was taking over my life which it was, I was working a corporate job that made me very stressed out. I quit my corporate job almost 2 years ago and started doing Uber and bartending on the side. Last summer my symptoms improved, I met someone who I thought was the “one” shortly after 3 months my symptoms got bad again and the guy ended up being a total asshole and I left him. I have multiple days during the week for almost a year now where I don’t wanna do anything! I over sleep on purpose, I don’t want to work, I ignore people on my phone, I don’t wanna go outside and I have to force myself to do anything and even “move” myself around. I still workout but it feels more like a chore since I don’t see any results due to my constipation.

I am having a hard time coping with life in general. I will be 32 in August and I am very behind , I barely make 40k a year and always stress about finding a better job which I do qualify but get overwhelmed just thinking about how demanding it’s going to be and making my constipation worse . I hate looking in the mirror now, I used to be so confident and I lost that. All of this is due to getting off a benzodiazepine! But I had to get off anyways because you can built tolerance and start to have more issues.

Idk what to do 😩 I cry so much because of this. I have tried different types of therapies and not much changes.

I’m only in my early 20s but I just feel like such a burden on my family and like I just can’t get things right.

I’m currently trying to get my degree but because of my chronic illness and bad mental health it will take me 4-5 years to finish a 3 year degree and it’s just making me feel like such a failure and like I’m a burden on my family. They are nice enough to support me financially but it just feels like I’m wasting their money.

I’ve been thinking about grad school since my field is just so competitive but I honestly don’t know how i would even do that with how much I’m already struggling.

I’m just so scared that I’ll live like this forever and always have to depend on others.

Does anyone else feel the same??

I’m trying to get some bulk ones for cheap that have a lot of electrolytes in them (not just 200 mg sodium) I keep finding some variety packs but generally they include an orange flavor, which I don’t like, or they are expensive.

have you tried making them homemade and if so do you have a good cheap recipe for it?

Hey y’all, I will try to keep this brief! My sister (also my roommate and bestie) has a whole lotta chronic illnesses. She’s lived with some form of pain / illness since early childhood, but her quality of life has gotten dramatically worse over the past couple years.

As someone with no chronic illnesses, I realize this sub is NOT for me, so please be honest with any replies.

My question is: Is it okay if I post here to ask about y’all’s experiences & thoughts from time to time? As her sister/roommate (she does NOT like asking for help lol) I am curious how others wish to be supported.

Mods please remove if not allowed :)

ETA: I have asked her directly and we have pretty awesome communication, I just want to do more when I can. So she doesn’t have to choose between a shower or doing laundry.

I am so tired of going to the doctor, being given samples of a new medication they spend half the appointment raving about (it’s much more effective, it’ll be better for managing your symptoms, etc) and then finding out it’s like 1-2k a month. I’ve gotten lucky with two of the new CGRP migraine medications because my insurance covers part of them and my savings cards pay the rest but I was just given Voquezna which is not even in my current plans drug formulary so it won’t be covered and I can’t use the patient discount card.

I really appreciate doctors giving patients the best possible treatment for their conditions and genuinely being excited about advances in medicine but when you tell a patient a new drug is “just a little more expensive than omeprazole” that’s not right. Not hating on doctors, it’s not their job to have the price of every medication memorized especially since so much can go into determining the cost of a treatment for a patient but still. I do really feel for doctors because they struggle under our current healthcare system like we do just in different ways.

Just frustrated with the disconnect between advances in treatment and insurance coverage. This medication is still extremely new and I’m confident it will be added to more drug formularies in the future but it feels bleak in the moment to get that sliver of hope and then have it jerked away. I can try to appeal but since I haven’t technically “failed” other treatments I don’t know if the struggle would be worth it.

Just wanted to vent to people that get it.

Hi,

I'm a bedbound person with severe ME/CFS, POTS, MCAS, and hEDS. I have been fighting the Idaho Department of Health and Welfare for a written, asynchronous, remote communication accommodation because phone calls for official business trigger extreme post-exertional malaise and do not allow me to meaningfully participate.

I recently made it all the way to the Office of Administrative Hearings. They granted my accommodation and found "sufficient cause" to proceed with a written hearing. The judge urged me to get an attorney because my claims are "highly complex." I've been trying. I contacted all of the primary legal aid in Idaho, including, but not limited to: the ACLU, Disability Rights Idaho, the Idaho Volunteer Lawyers Program, Idaho Legal Aid Services, and dozens of private attorneys. No one will take my case on contingency. The Supreme Court's decision in Cummings v. Premier Rehab gutted emotional distress damages under the ADA, so there's no money in it for private firms. I've been forced to do everything alone.

The ultimate goal is to take this to the federal level. I had a very experienced attorney reviewing my case. It was someone who has spent decades fighting DHW. He asked for my materials, gave me strategic advice, and told me I was doing well. Then he said he's retiring due to his own health issues and can't take new clients.

I'm back to the drawing board, and I'm crushed. I didn't come this far to give up.

The system is designed to exhaust you into silence. The merits of my case are strong enough that it's been taken seriously by anyone who's looked at it. But it's still not enough to get the help I need. And I've looked absolutely everywhere I can conceive of. People say they care about issues like mine until they have to show it.

So what am I trying to accomplish by posting this? Visibility is the only leverage I have left. The kind of attorney I need is a unicorn: someone who does ADA Title II and Section 1983 civil rights litigation against state agencies, who is willing to work with written, asynchronous, remote communication as an accommodation, and who will take a case with no guaranteed payout. It's probably the hardest thing I've ever done in my life. But I know there must be someone else somewhere in the United States who would care enough to realize that this is a fight for an extremely vulnerable community.

If you know a lawyer, please tell them about me. And if you can share this post, please do. My reach is small. I'm stuck in the same circles. I haven't totally burnt out yet, but no one can do this sort of thing alone.

Before anyone says it, yes, I know talking about my case online is not what lawyers recommend. If the system worked, I wouldn't be here. I cite the law because I was forced to learn it. I've been systematically violated at multiple levels, and no one was coming to save me. Knowing my rights kept them from completely steamrolling me.

If you've read this far, thank you. Even if you can't help, I'm grateful to be seen by my community.

TL;DR: Bedbound with severe ME/CFS. The Office of Administrative Hearings granted my written, asynchronous, remote accommodation and found sufficient cause against Idaho DHW. The judge urged me to get an attorney. I've exhausted every legal avenue in Idaho. No one will take my case on contingency. I need a unicorn: an ADA/§1983 civil rights litigator willing to work with written communication. Please share.

I have diagnosed medical ptsd from time spent in the hospital earlier this year. The problem is I really need a Nissen procedure. I just can't imagine willing putting myself in a medical position like that again where I lose all authority and control over my body.

And if you do can you add a picture in the comments? Don’t forget to hide sensitive info like IC numbers and your full name! Leaning towards this one but hesitating because sometimes yellow gold can be too gold.

My doctor told me I need to order a medical ID and I want one I can wear 24/7. And if I I have to wear it all the time I want to make sure it’s something I actually like.

I tried attaching an image but it didn’t work.

Thank you!!! ☺️

I’m a really stubborn person, so over the last 5 years with my condition I’ve seen over 25 different specialists, flew out of state to the best hospitals, spent thousands of dollars… and nothing ever even came close to helping.

I am exhausted. I’m depressed, defeated, tired, and hopeless. How do I get myself to stop constantly seeking treatments and reading about it? I genuinely do not know.

I have mental and physical disabilities, and it’s been so hard recently…I wish I were healthy. I feel so physically, mentally, and emotionally exhausted at work and today I had the biggest cry I’ve had in a while. I feel so stupid, slow, and disgusted with myself.

I’ve applied for disability before and got denied, currently working on another application with plans to appeal if it gets denied again. I want to quit my job so badly, every second is spent in pain and full of so much anxiety. 😥

All I want right now is to sleep and cry

I have a whole host of GI problems, and have been intolerant to gluten, dairy, and tomatoes for as long as I can remember. I can normally get away with eating a small amount. I normally don't have a choice, I still live at home and my family refuses to buy alternatives, and when I do, they eat them. Now, however, I cannot handle eating any at all without becoming extremely nauseous and having awful cramping.

I also recently had to leave my job due to my POTS symptoms worsening and am currently on the hunt for one I can do safely so my normal workaround of ordering food I can comfortable digest isn't an option right now.

Aaaaaanywayss that was a really long-winded explanation to ask if anyone knows any good tips or tricks to help with nausea? The cramping I can usually handle, but I have emetophobia and the nausea is unbearable. My GI recommended emeterm but it's $80 on the low end and I don't want to spend that money without knowing if it'll actually work.

How do you work on feelings like you're cursed? Like you did something wrong to bring it upon you? I feel like I can't escape the anxiety that I did this to myself. I feel so guilty all the time.

I have an autoimmune condition now on top of endo, a bowel condition and POTS. It makes me choke on food and water until I get hospitalised.

Everyone told me I was just stressed for a year and a half trying to figure out what was wrong. I can't shake the feeling that it's my fault that all of this has happened.

I’m in renal failure and in the next few months, I’ll need to start dialysis or choose the easy way out.
For years, I have been the friend who checks in, follows up, asks how you’re doing. I feel good about who I am as a person to my friends.
Sadly, these last few months, I’ve come to the realization that I can’t expect me from others.
Friends can’t show up when you need them the most and it’s incredibly sad.
Share a story about when a friend left you when you needed them the most 🥰

Show up half an hour early, the receptionists all wave me in, awesome.

Proceed to sit and wait 40 minutes.

When I get up to check, I was supposed to be at a different location? Even though *no one told me*? And yes, no one told me - I checked when we got home and the card says this location, not a different one. It's literally *checked* by *hand*.

So now, the appt where I was going to know if I need outpatient or major surgery, possibly cancer, you know, no biggie... I have to wait A MONTH for a new apot because the doctor is out until then.

I am not okay. I'm in pain from this shit as well as other things, and I can't, I don't have the patience/mental fortitude to *wait*. I could barely wait a couple weeks, now I need to wait a month?!

Guess the hysterectomy is getting scheduled first. Oh well. Guess if that one issue, the huge stone, drops, I'll just have to go to the ER... again.

And yeah, I checked in with dr on my app, asking him if he could at least tell me what the problems were there before we met up again. I'm just so angry and upset. I want evetything scheduled and ready to go already

A little bit about me. My name is becca, I'm 20. I love to read, crochet, and play video games. Also love watching movies and tv shows. I have pots, eds, and some form of gastric dysfunction.

I'm wanting to make some friends who understand chronic illness but are also willing to have conversations outside of our illness.