Feeling devastated and at this point angry. My partner fell extremely chronically ill a year into dating, and for almost a decade I was his caretaker. Hospital appointments, surgeries, bathing him, you name it, I did it all because I loved him.

He even said to me at one point that I should rest assured that he would do the same for me if the tables were turned.

He was officially declared in full remission last year, and we were so happy. Things were great.

Then I fell ill. Doctors think the amount of stress I was under (not just due to him but other shit that went on at the same time) made me develop my current illness. I’ve been ill for almost a year.

My partner started off the first few months as a genuinely caring and supportive person, but things went downhill thereafter. He is so fed up with everything and just taking out his anger on me.

He hasn’t done anything to help himself. I told him to go to therapy, he refused because it wasn’t “his” problem. I told him to go spend time with family to decompress, he refuses saying he “doesn’t need it”.

Instead, he’s become judge jury and executioner with me. If he thinks I’m doing something that will make my illness worse, he will chastise me and tell me that’s why I’m still sick. He is constantly frustrated and calling me lazy when I’m just ill and can’t help out as much as normal. It’s clear that his mindset is “rush her back into being well”.

He’s now thinking of leaving but is adamant that it has nothing to do with my illness, just that I’ve recently mysteriously become impossible to around. In fact, he’s now saying he’s been miserable this whole relationship (funny how that wasn’t mentioned when I was his caretaker…). As it stands he gets angry with me most days and I either get berated or the silent treatment whilst I’m curled up in bed.

Just exhausted and distraught and so angry. I feel completely let down and betrayed.

being chronically ill has taught me to appreciate what i have while i have it. things that once felt so ordinary, taking a shower without feeling exhausted, leaving the house, going out with friends, waking up feeling okay, or simply having a good day, mean so much more to me now.

i’ve learned that you don’t always realize how precious something is until your body takes it away from you. i used to wish away the little moments without thinking twice, but now i try to hold onto them. even on the days when i’m struggling, i remind myself that there will be moments worth being grateful for.

being sick has taken a lot from me, but it has also taught me not to take the good days for granted.

when i feel okay, i want to live in that moment instead of worrying about when it will end. i’ve learned to appreciate my life in a way i never thought i would, & to be grateful for every little piece of normal i get back.

Hello Reddit,

I’m trying to brainstorm simple ways to correct misconceptions doctors frequently make about me because they judge a medication I am on. This most often happens when I am hospitalized.

The medication giving me judgement is lithium. Apparently lithium was/is used for bipolar historically. (I don’t have bipolar). More recent research shows that lithium has a lot more uses such as dementia prevention and brain health. I’m on lithium to help with brain health. I have had two life altering brain injuries.

Either way it doesn’t matter. People with bipolar deserve healthcare as well. It also shouldn’t matter because the times I have been dismissed I was hospitalized for severe protein calorie malnutrition (2x) and for sepsis. In theory no matter what I’m on lithium for shouldn’t matter.

Yet I am dismissed at an alarming rate. One of my home health nurses pulled my medical records and she said that in the doctors notes several had written “underlying psych issues” for the reason for my illness. According to this same nurse she said reviewing my case and different times it felt the ball was dropped, correlated to when she would see doctors blame my “psych issues”. The nurse said it’s a known issues she as seen before with patient on lithium. She said reading between the lines and looking at the pattern she felt they would bring it up as if to say it’s all in my head or maybe I’m manic instead of admitting they didn’t know how to treat my complicated case.

I just want to figure out a polite way I can correct doctors.in the past when I have tried to correct them one doctor accused me of lying or being emotional.

These are the same doctors that tell me I just “need to make it work” and that it was “in my head” all while being severely malnourished and my body actively rejecting the feeding tube. I’ve been TPN dependent almost a year now and am doing a little better. But there are still inherit risks and so being hospitalized isn’t completely out of the realm of possibilities. I’m just trying to figure out how to nicely correct this assumptions if they ever come up again.

If It matters I have ME/CFS, POTS,vasovagal syncope, raynauds, additional Dysautonomia symptoms. hEDS, histamine intolerance, suspected MCAS, history of TBIs, and functional intestinal issues including dysmotility.

I saw this on a youtube short, so apologies for not properly crediting (I’ll put the link in the comments, they explain it better than me lol!).

I’ve never related to spoon theory, I get the concept, but it’s never felt super accurate to my experience.

Then I heard the fork theory.

Everyone has a fork limit. Everyone can tolerate a different amount of forks stuck into them and not all forks at the same.

Maybe you can handle 20 small forks or 1 big fork. But if you have 10 small forks and get stabbed by a big fork then you’re DONE.

And forks can be anything. Nausea, a headache, having to pee, a minor inconvenience, having to see a new doctor, broken motility aid, facing ableism, etc.

Forks can also be disposed, but some forks are easier/faster to get rid of than others.

The example they gave was you have to pee, and you go pee, that’s one fork gone.

You still have the wound from the fork, and that takes some time to recover, but it’s better than having the fork in you.

I TOTALLY relate to fork theory. It makes so much more sense in my brain lol.

I am currently at a moderate number of forks lol. I could take a few more small ones and manage to cope lol. But anything more than that and we’re pushing it.

Have you heard of fork theory before?? I’m not sure how I’ve just heard of this today, but I really like it lol 😂

im 17 years old, i knew i had low iron for around 5 years but my parents never got it checked, in july i got my first blood test, my ferritin was a 6. since then ive taken iron supplements first thing in the morning with orange juice for those two ish months, i had my blood tested last week and my ferritin is a 3. WHAT THE FUCKKK DO I DOOOOOO. how do i get back from this???? im anemic and my ferritin is a 3, do i just accept defeat and get ready to suffer forever??? i took my meds and it didnt work.

I fell today. I slipped and fell. I haven't fallen in almost a year. I feel so done. It is just too much today. I'm in lots of pain for sure. I just feel overwhelmed.

Being disabled, middle aged, BLACK and poor gets to be a little too much. especially in America right now.

I keep telling myself it's a day but I am so low. I am just crying and I know it isn't the pain. The pain is bad but it's just everything.

I am truly tired.

for example, when they chart things like "denies abdominal pain, denies fever, denies diarrhea" etc. they chart an entire assessment as "denies" when they never even did an assessment in the first place. why even do this report if you're not actually assessing the pt? it's especially annoying when they write "denies" on symptoms that are the reasons i'm coming in for evaluation.

or, "lung sounds clear, no wheezing" when they didn't even listen to your lungs. "normal bowel sounds" when they didn't even listen to your stomach.

another thing, i'll preface this by saying my new PCP (i've seen her 3 times) is very kind, compassionate, prompt with my referrals, and eager to help. however it just seems as if she's confused or doesn't know what's going on sometimes - maybe she's not reviewing my information before meeting with me and she hasn't had much experience with me yet.

i notice that on my referral she included a diagnostic code for mixed ibs & constipation. i have Crohns disease & have diarrhea every day of my life almost, with partial obstructions and strictures. completely different from IBS and constipation. now i'm aware these referral codes don't really matter, but i don't want anything to do with IBS anywhere on my chart because i have IBD and i don't want any providers getting confused.

but during my appointment she asked if i take a medication for my IBS. like why are you randomly saying i have IBS when i have a disease that is completely wrecking my intestines and beyond, when you definitely are aware of what disease i have...? it made me a bit nervous that my own primary doctor is confusing IBD with IBS.

i also asked for a referral for a pain doctor and she said i should stay with my current pain doctor.... i don't have a pain doctor yet, that's why i'm asking for a referral... and even if i did have one already & wanted to switch, who would you be to tell me to stay with my current without asking any questions or receiving any context?

the medical system is just so strange sometimes and i'm finding the minute details bother me more and more as i'm going through this flare, just some pet peeves i guess 😅

i have mecfs and i know this feeling too well. a symptom comes up as a one off and then slowly starts to take over more and more. lately its been "my hair is greasy and gross and feels like i need to wash it, but i swear i only did it 2 days ago" and quickly realise its been a week, which i understand isnt that long, but its been a bit of a shock to me. bathing and hygiene has always been something super important to me and i've always prioritised my energy for it (even missing the small happy moments in life for it) because it keeps me feeling human. ive been skipping showers more and more and finding myself keeping on top of things even less.

i know many dont even have the privilege to bathe as much as i still can, but i just wanted to reach out to a community who knows what it feels like to start losing themselves and the grief process that comes with it

Hello!

My name is Jacob. Last year, my sister Aubrey was diagnosed with Multiple Sclerosis at the age of 26. Her and I are big fans of Love on the Spectrum and we thought “why doesn’t this exist for chronic illnesses?” So we made it exist!

We just completed our film festival circuit where we picked up several awards and today we’ve released the doc to the public. It’s 22 minutes and our ultimate goal is to make more episodes that feature other chronic illnesses.

Please enjoy, please feel free to offer feedback, especially if you are part of a community represented on screen, and please share with someone you feel should watch it.

XOXO

https://www.youtube.com/watch?v=EBdXc0y09eU&t=1s

I’m a bit desperate to figure out what’s going on with my health and would appreciate any advice, even anecdotal.

TL;DR been vomiting almost daily for about 6 weeks, led to an overnight admission due to esophagitis, all testing normal, no answers

Symptoms are as follows:
• cramping pain in lower abdomen/around bellybutton (not related to period)
• bloating that worsens immediately after eating
• burning/sharp pain below ribs (central, just at my stomach) that lasts for several hours at a time
• early satiety and low appetite
• excessive burping and gas
• nausea that worsens immediately after eating
• acid reflux
• vomiting (often immediately after eating)
• extreme fatigue
• feeling lightheaded/dizzy
• headache
• slight jaundice (ER doctor noted yellowing in the whites of my eyes)
• bradycardia (but ECG otherwise normal)
• low blood pressure

Background: I’ve struggled with restrictive eating for several years and since 2023 have gone from BMI 27 to 20. Lost approx 25% of my body weight. This has fluctuated some in the past year and I’ve lost weight again secondary to these symptoms despite making efforts towards recovery.

Currently located in the UK but will be returning to the US shorty.

I’ve previously seen a GI regarding symptoms of stomach pain, bloating, and periods of diarrhea/constipation. Previous diagnosis of IBS (non-specific) following unremarkable test results: CT scan with contrast, HIDA scan, abdominal ultrasound, endoscopy, and colonoscopy.

Only findings at the time (2021) were a few small polyps in my stomach and gallbladder, with recommendation to follow up in the future.

I’ve struggled with chronic stomach pain and bloating for years despite making several dietary changes to identify possible triggers. I’m lactose intolerant and gluten sensitive (non-Celiac), generally adhere to low-FODMAP guidance, rarely drink alcohol, and do not smoke.

Following several weeks of general symptoms of fatigue, bloating, and stomach pain (that I attributed to my usual issues), the vomiting began. From July 18-30 I was getting sick every day, several times a day. This came with persistent nausea, headache, fatigue, pain in stomach and back, feeling lightheaded, low appetite (for obvious reasons), bloating, and gas/burping.

For context, I used to be much more active (gym 2x weekly) but I have almost no energy anymore. Last year I could work a full shift at my job (fast food), then walk 45 minutes back home, and up 4 flights of stairs with no issues. Now, I’m having to rest after even 1 flight of stairs.

I was traveling at the time of symptom onset so I totally attributed the vomiting to motion sickness, then figured maybe it was stress, but it didn’t stop and wasn’t helped with over-the-counter medication. I have an IUD (Mirena, several years old now) but I took 2 pregnancy tests to be safe, both negative.

I saw my GP on July 30th, the initial urine dipstick test was slightly positive for a UTI and negative for pregnancy. They said they’d do proper urine culture but in the meantime prescribed antibiotics (trimethoprim). I was also diagnosed with gastritis so was prescribed peptac, omeprazole, and prochlorperazine tablets to help with the nausea.

The GP ordered several blood tests (August 5 and 13) which all came back normal except for what they called a “blip on my liver enzymes.” They also tested a stool sample for bacteria, negative.

Through the month of August I’ve continued to experience these same symptoms with only mild relief. Every day is the same story of worsening nausea/bloating/pain after eating, sometimes resulting in a vomiting episode. I’m now being sick every few days rather than daily, but otherwise no improvement.

On August 26th, I had a particularly bad bout of vomiting and noticed spots of red blood at the end. I figured this was just from the strain of the retching so wasn’t too concerned. But with this coupled with the lasting symptoms, I got back in touch with my GP.

Saw the GP in the morning, he straight up said “I’m stumped,” because all my bloods have come back normal and the medication should be addressing the issues. He suggested stopping the omeprazole (for some reason??) and said I’d be referred for an abdominal ultrasound. I was given another pregnancy test (negative) and also learned that my UTI culture had been negative. Was basically sent on my way with the recommendation that I call if things worsen.

And they did! That night, I vomited black/brown blood that looked like coffee grounds. I was sent to an out-of-hours clinic that said while this was concerning and there’s clearly an issue with my stomach, all my vitals were stable so there was no reason to admit me. They gave me another course of peptac and buccal prochlorperazine, and instructed me to call my GP on Monday to request an endoscopy. Again, was told to call back if things worsened.

On the 29th, I woke with significant stomach pain, fatigue, headache, and dizziness. I experienced some dry heaving (basically only brought up saliva but it had drops of blood again). I contacted the out-of-hours clinic but once again my vitals were stable. However, they were concerned I was dehydrated and wanted to run additional blood tests so I was sent to the Acute Medical Unit at the local hospital.

My bloods all came back relatively normal (but the doctor noted that they were different from the prior tests) but they still gave me IV fluids plus nausea and pain medication. The doctor noted that I was slightly jaundiced, with yellowing in my eyes. I have bradycardia (resting heart rate frequently drops below 50) but my ECG was normal. They also noted that I had low blood pressure. I was admitted overnight and got an endoscopy the following morning.

The endoscopy showed esophagitis (ulcers and bleeding) and some irritation in my stomach lining (biopsied for H pylori, negative) but everything else looked fine. So that explains bleeding but not the root cause of the vomiting. My repeat bloods done that morning were normal so I was prescribed sucralfate for the ulcers and discharged.

I just had an abdominal ultrasound done yesterday (from my understanding they were looking at my liver and gallbladder) which was totally normal. They ran repeat bloods and did another ECG, all normal except that I again had low blood pressure.

At this point I’ve been told just to continue with the medication and hope that the symptoms resolve themselves. I’m beyond relieved that there’s nothing majorly wrong but equally frustrated to have no answers! I feel horrendous and exhausted all the time, and I’m struggling to eat enough, so am hoping someone here may be able to offer some guidance.

To put things into context first, I have POTS and hEDS. thought things really couldn’t possibly get worse, but unfortunately I was wrong!

I have now seen that despite my stomach being ulcer free, the diagnosis or after summery / findings are “Gastric stenosis was found at the pylorus”

I mean, it makes sense with the vomiting and retching and early fullness for gastroparesis, but idk?? I’m so confused.

I am an adult, twenty one, and female. Isn’t this kind of thing extremely rare in adults or females? How can I have this? They’re soon going to do testing for gastroparesis but, genuinely what is going on??

It’s like my entire nervous system said go to hell!!

I went to my rheumatologist today and it went so badly i ended up crying in the middle of it. I have been trying to get diagnosed for like 7 years and i finally wqs starting to get somewhere with my rheum.

I suspect I have an auto-immune disease or disorder because of my symptoms. I had gotten a round of blood tests done at my last appointment with my rheum and I had two different positive/abnormal results that could point to me having an auto-immune (rheumatoid factor IGM and RNP antibody) My rheum has consistently shot down the idea of me having anything autoimmune or immunodeficiency because none of my xrays show any sign of rheumatoid, inflammation etc that line up with an autoimmune disease.

I've already had a positive ANA test result so i thought finally this might point out that I have an auto-immune to her and she basically handwaved my results entirely. One was apparently not that abnormal so not a huge deal and the other had never had that result before so it might be a false positive (she's never tested for that specific test before thats my first result/test for that) and just went back to just saying we should just manage my symptoms (joint pain).

I tried mentioning i have other symptoms i want addressed (repeat infections like utis, bronchitis, sun sensitivity and circulation issues) and she just didn't bother with that. I just feel sad and done. Am i putting too much hope on having an autoimmune and i just wont accept i dont have one or should i just give up getting diagnosed entirely. I just might stop going to my rheumatologist entirely bc every visit makes me sad and feel dismissed/ignored.

Yesterday I lost my in office job due to a severe health crisis. In the middle of my crisis, I applied for countless WFH job, interviewed, and got a brand new fully remote job in a matter of 4 days. I did that all while being the sickest I've ever been. And when I lost my current job my partner told me it was okay. It will ne hard but he will pay the bills for the month since my new job starts the 25th. He said it was okay and that he would do this before I couldn't go back in office. And then yesterday it happens and he immediately pulls away from me. He didn't want to even touch me. He left to go to his parents and then texts me saying he needs space, he doesn't know if he wants this anymore, he's not happy, this is hurting him mentally, physically, and financially. And now he isn't talking to me.

He said it was going to be okay. He promised to be here through it.....and yesterday he said we shouldn't even be in this situation in the first place? Like I chose for this to happen? I worked so hard to get a new WFH job.....and I got one and I was so proud. But he doesn't care. One hard month is too much for him and he "needs space to think". I just don't understand why he said all those things just to turn on me once they became real? Now I'm just stuck for a month with no money and unsure what is going to happen with bills and alone. And I'm still so sick and in so much pain.

I'm okay. I'll get through this like I always do. But it's so unfair. I didn't do this to him. It happened to us both and I'm being blamed.

Hey, awesome community. With permission from mods and after inspiration from a local Reddit buddy, I created a Chronic Illness and Chronic Pain and disability sub located in Portland, Oregon PDX Metro.

Finally had the time to start working on it today, got motivated especially since in r/askportland there was a post earlier today asking for online communities in our area just like this.

Would love to have you join us if you are interested. All are welcome: r/ChronicIllnessPDX

🖤

How many have lost their teeth or had to have major dental work due to autoimmune diseases? It devastates me

What has become your best friend to deal with your chronic pain or in some cases the swelling of your joints? Personally its epsom salt soaks & magnesium supplements! For example my hip popped out of place today at school (normal occurrence, i popped it back dw) and my leg has been hurting all day from it and now im soaking in a hot epsom salt bath! :3

Hi everyone this is my first post but I wanted to seek advice or just another perspective on this. I have Ulcerative Colitis and usually when I'm at home or working a job I like, my symptoms seem totally manageable and I'm able to go about my day. But AS SOON AS I get to college, everything goes downhill and I genuinely don't know what to do.

So far I've only made it through one semester of college (largely due to my flare not affecting me until the end of the semester) and then I had to withdraw from the second semester because I had to go to the hospital again, and symptoms were unmanageable.

I'm back at school now and thought I'd be able to handle it, but my symptoms have really flared up again and it's only been 2 weeks. I really don't want to drop out of college, but I don't know what choice I have. It seems the stress and overall environment really sets off my flare and I'm worried about my future. Does anyone else relate?

I feel like I'm living my last moments omg someone send help haha

It's like, how can this be my body?! How can it be destroying me this way every month on top of already dealing with a chronic illness!?

I've had a migraine since Sunday and so far the only thing that's working is a medication I'm technically allergic to (can't metabolize it properly), and while I'm struggling to function, my boss texts me a screenshot of my sick leave balance like that's supposed to be helpful. I get that I don't accrue much because I'm part time, but this isn't a headache I don't feel like working through. I couldn't hold down water. WATER. I explained that my doctor is trying to keep me home/get me seen asap because I've not had a multi day migraine in years, but nope the leave balance screenshot just added a whole new level of stress and stress is GREAT for migraines. I just turned down a more low key position because I was offered more hours and more pay, and now I genuinely regret it. The amount of stress I'm under weekly does not feel worth it anymore. I know I can't rage quit my job but damn I want to sometimes.

I have Multiple Sclerosis and it's taken a lot from me...but not my pushups. Want to connect with others with MS and other incurable diseases that keep moving.