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 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 😅

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 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.

Has anyone navigated receiving accommodations at work? I really want to work hybrid (remote 2 days a week) for multiple diagnosed disabilities I have. I am requesting 2 letters, one from PCP and one from my psychiatrist. I have severe mental health issues and chronic pain.

I just landed a full time salary job, I started today. However, I have worked here part time for over a year and as a full time intern in the past. So, I really do know how bad on-site is for me.

My employer is very strict about this and does not allow anyone to work hybrid, only remote scarcely as needed. HR here sucks and I am scared they will push back ):

Any tips?

want to make bracelets to subtly show awareness to chronic illness, what colors would you associate with every condition/charms even?
reminder: i am not trying to romanticize it, i am trying to accept.
tldr: what color is every chronic illness

read in my chart next time im not doing so well i am up for admission . right now im doing okay but on my walk test lowest my oxygen got was 95-94 which isnt shitty but some hospitals would be like ” nah were keeping you “ which ive dealt in the past . my dad says im overly anxious about my oxygen now … um i think anyone would be if they had near critical levels of 79 . but my dad was really nice and said if he sees me struggling hes gonna bring me to the hospital himself so i thought that was really nice . i just dont wanna deal with such a critical event again- which is why i think the hospital wants me admitted again

For context, I (19F) have severe HSD (I only got diagnosed this year). However, throughout my childhood, I was diagnosed with scoliosis, femoral anteversion, pigeon toed, tibial torsion, etc. It was so bad to the point I needed surgical intervention, unfortunately, the surgery failed, and my condition continued to get worse.

I had my surgery at 11, the surgery involved inserting screws in my feet. A risk of the surgery was that I could develop a blood clot in my feet, that would travel up to my lungs and kill me. To prevent this, I had to move around using crutches as opposed to being on bed rest or using a wheelchair. Because walking (with the assistance of crutches as I was physically unable to walk without them) reduced the risk of a clot forming in my feet.

When it was finally time to return to school, my school informed me that I wasn't allowed to use crutches. When we asked why, they said that "crutches are a hazard", and that I was expected to use a wheelchair. When my doctor had attempted to inform them that it was imperative that I use crutches, that considering the surgery I just had, sitting down for 8 hours straight every school day for months on end without being able to walk around would increase the risk of me developing a blood clot, they genuinely did not care. My doctor had even contacted the principal, she still did not care. "Rules are rules"

Idk why they had that rule. Why on earth would crutches be considered a hazard? Do you wanna know whats more hazardous than crutches? A child dying of a blood clot because of a ridiculous school policy.

It was either A) Go to school without crutches or a wheelchair (which was impossible because as mentioned prior, I could not physically walk without them) B) Give in and use a wheelchair every school day. The second option ended up winning.

Does anybody have stories of schools not being accomodating at all irregardless of how many times your doctors, parents, or yourself tried informing them otherwise?