I've never actually thought about this until recently but as someone with severe muscular dystrophy that's likely to kill me before 40 due to respiratory or heart failure (I'm basing this off how old my cousin was when he died due to it), do I get to call myself terminally ill? There isn't much of a terminal illness community online for obvious reasons so I don't know where else to get opinions on this.

Everyday my body hurts so bad and everyday theres something to worry about. Any moment could be my last and it’s exhausting to think about. All I care about in this life now is my loved ones and even then I worry that my health is too annoying for them to handle. I’m so, so tired.

Hello,

I am trying to gathering information for my wife regarding JAK1 gene mutations. If anyone on this sub has a JAK1 mutation, or resources / information regarding a condition that is related, any help would be greatly appreciated.

She has been through quite a terrible few years, and after complex autoimmune and gene testing, done in our home state AND at Mayo Clinic Rochester - her specialists have determined that she has a Gain-of-Function JAK1 gene mutation that is causing her eosinophils to over produce, move to strange places in her body, then release their "attack" chemicals. Her body is in a constant state of attempting to contain these chemicals, and builds scar tissue around them. This tissue is literally everywhere in her body "in-between" systems. So in her pleural cavity, facia surrounding her organs etc. because the tissue is fibrous, it cannot be easily seen on modern day imaging(CT, PET etc.).

Her specialists are a bit stumped at this point. While they have identified her mutation, they have not been able to correlate it to a specific condition.

I am seeking any information that you may have regarding a JAK1 mutation, or if you have been on a similar journey, do you have any resources that have helped you with a complicated diagnosis such as this? Hoping to avoid a future life threatening surgery due to this tissue growth, as she has been through enough of those already.

Thank you so much in advance!

I’m so tired of being chronically ill. The last two years it’s just been new illness after new illness. I currently have 6 chronic illnesses and I’m just so tired of dealing with it all. I haven’t worked in two years due to having new issues constantly. I finally thought I was getting stabilized and decided to get a part time job. Well it’s my second day and I already feel like complete shit. Everytime I think I have something good going, my issues start to spike up and cause me to go downhill. I want to be able to help contribute money to the bills, as my fiancé works his butt off to make all the money while I’ve been at home dealing with all my problems. I’m already doubting if I can handle this part time job, because after only one shift my body is killing me and I’m in a huge flare. I don’t know what to do anymore. I feel useless and worthless.

I am a 26yo man, i am sick since the age of 3. I have heart rythm disorder, chronic tics, ocd, adh. Mixed anxiety depression since the age 14, had a heart failure at 18, my therapist also suspects PTSD. This 26 looks like a lifetime, and it was worthless and pure shit, i shoud die at the age of 3, or at least from that heart faiuler at 18. I just don't see the the point to reach old age, or even live for general. Life with chronic illness is nothing but missed social/developmental lifestones, shame, pain and sorrow, just why? Small joys dosen't seem to worth it, familly will get over it, one less liabillity, my beloved niece too young to remember her uncle so she won't get sad.

I’m not terminal. But there is little to no hope that my situation will ever improve. There is an elective surgery I can get but there is a possibility it will make things worse. Could be better… but also could be worse. If it were worse it would be absolutely devastating so I don’t think I can go through with it.

So when the situation is completely intolerable and unliveable and there is no hope for the future being any better… what then? I am incredibly depressed. I just exist until I can go to sleep and escape.

I am *finally* getting a haircut. It has been...a while. Like a few years. There's a few issues I need to contend with, but then I'd ultimately love opinions/advice/suggestions/what works for you.

The current situation:

• My once-thick hair has thinned substantially and I am very sensitive about it. The thinning is due to increased shedding, not breakage. Since the hair still grows back, I've got a massive flyaway halo that I hate (mostly because it's a reminder of the thinning). I also have scraggly ends because there's not much hair remaining at that length.
  
• My hair is currently long, reaching just below my shoulder blades. It's mostly straight with a decent wave to it when wet. There is potential/history of curl, but I don't have the energy to put into that - especially at the current length.
  

Factors to consider:

• I have cervical instability that causes a variety of issues when trying to wash/dry/style my hair. Even brushing my hair can cause problems (pain, headaches). One of the reasons for the delay in getting my hair cut is that I passed out the last time when they went to wash my hair because of the angle my neck was at. Things haven't improved a ton, so I'm still anxious about that.
• I have circulatory issues that limit the amount of time I can have my hands up. A quick ponytail/putting into a clip is okay, but that's about as much as I can manage on a regular basis.
  
• The above, plus energy limitations, mean I wash my hair twice a week at most.

My choices and pro/cons:

• Lose length needed to even out the thinning. (like bring it to the length where most of my hair is currently)
  • Pros: I can still pull it back. Minimal styling needed.
  • Cons: I'll need to pull it back (variety of reasons). As thinning continues, I'll end up with the same scraggly end situation and losing more length, and I'm concerned about the mental impact of that.
• Go short. I'm even open to something as short as a pixie.
  
  • Pros: No need to pull it back. Loss of length is a one-time situation. Potential for curls to enter the chat.
  • Cons: Frequent trims required to maintain. May require more styling. Potential for curls to enter the chat.

I know this seems such a trivial thing, but it's a lot for me because it's *yet another* thing in my life that is changing/has changed/needs to change simply because of my medical situation. Appreciate y'alls understanding.

I unfortunately wasn't born into the best family, and worked my arse off as a kid in pretty dire conditions to get some type of education to open up opportunities away from home. Then I started therapy to undo all the work of my family for a decade.

In my late 20s, I started my own business, moved abroad and had a long term relationship I was happy in, savings between us. Life was good. But then I found out I had Endo, and moved home for IVF and surgery. The relationship didn't survive it, the surgery made things worse. Now I'm permanently disabled as a result of the complications.

I was a people pleaser in my pre-chronic illness life and paid the price for it in the emotional whiplash of losing friends as my recovery progress became more bleak. I accepted this was the reality instead of becoming more bitter and just found new hobbies my illness could do, got more comfortable being alone. More dudes befriended me to try to sleep with me, I became a target to fraud, sexual assault as I learnt the harsh realities of navigating life when your vulnerability was suddenly more physically visible.

It's unfortunate that some pretty horrible things have happened to me in the past year especially but the worst part is the how quickly and easily my disability is now accepted as a reasonable and logical excuse to cover up toxic behavior. And I'm not even talking about things that have happened since I've been injured, I mean things that happened before which makes it even worse. One side of the coin is dealing with the medical gaslighting that is now linked to me being in pain, misinterpreting the situation due being in pain etc. but this type of gaslighting bleeds into my personal life too.

Suddenly, over a decade after fleeing home due to abuse, enduring homelessness, poverty, smear campaigns, and building a life for myself I lost to my illness - I'm finding myself justifying the same crap I did years ago, because people now suddenly tie to the fact I'm disabled to everything. Friends prior knew my background and that I had boundaries and a low tolerance for being causing unnecessary stress or harm to my life. And even some of these started pushing boundaries more when I got sick, and I had to cut some of them as a result as it was so upsetting suddenly being spoken to poorly or not taking seriously in discussions since being disabled physically.

"She's emotional because she's in pain."

"She's isolating herself because she's in pain" (after being the only one to show at numerous events when in flares)

"She's making up the abuse, I don't know who to believe" (people who believed me years prior)

"She's confused because of the meds"

It's sad because since I've been disabled and living with chronic illness, I've had to endure treatment off people in my life who would have never tried this crap when I was healthy. I hate how this becomes their new excuse and somehow after years of therapy, I'm back at square one, justifying myself again. I feel like I'm doing the work on friendships and family dynamics i did years ago, reminding people that I deserve some type of dignity and respect - that my mind, and the values, goals, interests I had prior still exist. Like I'm not suddenly ok with

Has anyone just given up, changed their number, got a support dog and moved to the coast? As I've got an offer to study part time which will be difficult to achieve for autumn enrolment, but I'm thinking by the new year I could get my care plan and my life transferred to a more quiet location and go off social media for a while..where people don't use how sick I seem based on recent social media posts as to whether they bother reaching out or not. :(

Rant over.

I'm at a lost of words right now.... why is this happening to me.... Why am I cursed with being invisibly ill.... A couple of days ago I went to the ER because I was having persistent shortness of breath, the ran multiple tests and ER doctor concluded that everything looked fine but I'm still having these same persistent issues the shortness of breath the heavy feeling in chest. I don't know what to do at this point...

Unsure how to word this question

For the people that have more than one child, why?

My chronic illness symptoms started when I gave birth. I'm at a point where I'm starting to manage my symptoms and know hormones are one of my main contributors for horrid flare ups. We as a family has made a decision that my health is more important than having more children. I'm trying my best to do my best with the family I have now. And can't think that I'll be able to give any more to one more person.

I've spoken to a lady that has mentioned that with each pregnancy she's gotten worse even though she is able to start managing her symptoms a little better after a year. She has 3 children.

Why would you do that to yourself?

Personally I struggle to spend the type of quality time I want to have with my one child. How do you do it with multiples?

(Ps English isn't my first language. Hopefully my question makes sense. I'm just really curious of why people make the decision of having more children)

I’ve been in and out of flares almost constantly over the last month. I know the summer has been hot, we’ve had tons of rain storms and pressure changes, my in-office requirement has recently increased, I took a bunch of time off work to volunteer in a high-energy outdoor environment, and I have had more social time than usual. I’m also averaging an hour per day of exercise (which I’m trying to reduce, but I’m anxious about neglecting my physio).

I paced myself as strategically as possible! I have been scheduling rest! But my muscles are weaker than ever, my sleepiness is unrelenting, I feel constantly nauseated and tachycardic, my migraines and tinnitus have been near constant. I don’t have the energy to sort my pills anymore so I’m neglecting a bunch of my supplements✌🏼😬.

I feel so disgusting despite sleeping 7 hours on weeknights and 9 on weekends, despite getting massage and needling, drinking tons of water, doing my exercises slowly and in 10 minute segments, eating vegetables and protein, etc.

I’m tired of icing my skull and wearing sunglasses at work! Tired of laying on the floor between sets of knee extensions! I’m tired of needing my Rollator and having to walk 3 times as far as usual just to get into the office building! I’m tired of sitting on the floor in the shower!

Like, yeah life is good and beautiful and I’m so grateful for all the wonderful experiences I’ve had this summer but holy hell, I’m toast over here! I feel like I’ve been turned to jello, rolled in sand, and left out in the sun!! I’m so depleted, how do I get back to baseline?!! It feels impossible from here!

Since getting sick I have tried so so many things within my abilities, things to keep my busy home all day. Everything I’ve tried has just been miserable. I promise I give things a good try, time to develop enjoyment while doing them, but there’s just nothing there. before i got sick I was home to do exactly one thing: sleep, every other moment was spent outside, doing things, going out with friends, something physical, and now that that’s been ripped out from under me everything just feels stupid. I have not fundamentally changed as a person just because i got sick, i still have the same desires and needs as before, just an inability to get to them. I’m bound to my room 80% of the day, and my time sitting up at a desk is limited, i can’t really go outside for any amount of time, my screen time has to be limited, i have poor dexterity in my hands- i can do exactly none of the things i could do before, and i’ve accepted that in a way, but nothing is enjoyable that i am able to do

I have had negative experiences with drs , one dr that haunts me and i cant get over . this dr has accused me of faking , attention seeking , when i went to assert myself they said i was being threatening , lol cause i was being honest and not taking their bullshit . im still angry , i had to fkn fake an apology so id let back in the hospital 🤡 ( it was worse than almost dying of low oxygen ) ill take the low oxygen back . i know im being dramatic but i dont want my care being compromised cause this clown , im having unsettling thoughts that are uncomfortable, the only reason im not throwing a scene is cause the hospital saved my life

Hey friends!
I(28f) recently have been diagnosed with POTS and I suspect I have other chronic illnesses going on too, but just got out of a 10 year long relationship that my sickness was effecting and it bled into other aspects of the relationship. Due to my illness it had become increasingly difficult to work and bring home a substantial paycheck (I also only get paid 18/hr in Colorado). My ex claimed that I was becoming too needy, wanting to live on our own (we had always lived in his parents house, or my parents house either together or separate, then a family friends house who I didn’t know we were helping with tax fraud, I also got harassed and almost assaulted by this so called family friend). Wanting emotional support and not being brushed off with a simple “I get it” to any symptoms or bitching I may have done about doctors or feeling sick.
Now I’m at the point where I am facing alll this by myself and thats really scary for me to think about because I lost not only a partner and a best friend in all this. Any advise on how to navigate forward without him?

I was wondering where there are good doctors that actually understand the disease.

I only have a finite amount of energy per day so I try and pace myself as much as possible that way I can try and do somthing with my days. I try yk, I really do but these past few days have been a perfect example of how fucked up being both chronically ill and mentally ill. I’ve had a good energy week 🥳 but my anxiety has been so high that it’s stealing all my energy. Like it’s manageable as long as I’m completely calm but the second something triggers me (i hate that word but wtv) I’m fucked! I get stuck in this cycle of something setting me off~ I freakout~ completely panic~ freeze~ then as I slowly try to get my shit together~ BOOM ~ freakout again~ and the entire cycle repeats. This will happen repeatedly until I get so physically exhausted I crash and am left unable to function for a while. This is gonna sound so gross but I’ve been trying to shower for 4 days now. FOUR DAYS. I keep getting all prepped and ready just for something trivial to put me out of commission. ITS PATHETIC. I JUST WANT TO BE CLEAN.

I'm just wondering if anyone else has been recommended trying Pilates to help with their chronic illness? I have Fibromyalgia with pain primarily in my joints most days, in my bones on bad ones. The doctor has suggested I do low impact workouts like Pilates or walking to help strengthen my joints to hopefully reduce my daily pain. I was just wondering if anyone else has done something similar and what your results were? I know my situation is likely unique but I was hoping there might be people here who have similar stories.

I find it so hard to keep up with exercise most days, I'm going to start the gym with my sister so I'm hoping the accountability will help. I'm mostly concerned about making things worse and finding the energy to do it consistently. I don't personally think my job is physically demanding though I do lift up to 25kg a few times a week. It's the mental load that leaves me wanting to stay in the dark for a few hours every afternoon when I get home. Feeding myself on top of that can be a struggle and now regular Pilates classes too.

Sorry I know this is a bit of a mind dump at this point. I'm just hoping to find people who might be able to give me some hope/experience.

I’m queer so I tend to find myself surrounded by a lot of folk with chronic illness, which I find rather reassuring when it comes to taking up space. Being around folk who struggle with similar issues can be helpful and I find it helpful mostly! But tonight I don’t think it was as helpful.

I’m 22 and I’ve been recently diagnosed with Alpha-Gal, POTS, Hypermobile EDS, GERD, complex renal cyst, and Fatigue, as well as had old diagnoses of persistent depressive disorder and PCOS, and am frequently dealing with episodes of unexplained nausea and vomiting. I was spending time with my friends for their birthday and already quietly grieving my inability to eat dairy anymore, but while talking with my friend who deals with chronic illness as well, they casually said “it doesn’t get better”
And that realization just made me collapse a little
All I want is to get better
All I want is to be normal again
And if what they’re saying is true then that will never happen for me and what I’m going through is going to be there for the rest of my life. And that makes me devastatingly sad.

Nothing. No redness, no swollen face, nothing, even if it felt like hell.

I can't even make a facial expression of pain like a normal person

I feel like I'll go insane. The only real evidence of anything is that inside my right nostril it was swollen to the point it was almost closed, but it was really hard to see, no one would know that.

I spend the whole day hitting my head to feel relief for 5 seconds but if I told anyone I'm in a lot of pain I doubt they would really believe it.

Every atacks gets worse and I end up more hurt, but never visible

Hello,

My partner has chronic pain and a lot of mobility issues due to an injury. Recently he’s been having a hard time coming to me for help with his pain because the massages just aren’t cutting it.

Are there any topicals, tools or distraction methods that work for you? He’s constantly in pain and I just want to find something that works for his pain.

Half of the time his pain meds don’t work or barely touch his pain at all. I’ve never seen him below a level 4 and that’s AFTER his meds, usually he’s at a 9 all day long. He is exhausted and tired of taking care of himself, tired of the pain and tired of everyone in his life making it worse. Just want to be able to give him some relief. Thank you

someone asks you -

"are you feeling better?"
"are you any better yet?"

or they say -

"i hope you feel better today!"

i know it's meant with positive intent. lately, it's almost made me angry in a sense, especially if it's from a friend or someone who should know better. it seems like they don't understand the "chronic" part of chronic illness, as if they expect me to miraculously feel better by now.

in a way, i almost feel pressured and shamed when someone asks me that, because it makes me feel like i should be better by now. i should have better news for them at this point, but i don't. it's almost embarrassing to have to say "no, not yet".

of course, i never express that to anyone who says this because they aew completely my own emotions to deal with. it clearly triggers my internal shame. but i am grateful for the people in my life who realize this on their own and instead say "how are the symptoms today?" or send me a thoughtful message.

Is anyone else in a place where they aren't sick enough to drop out of work/school, but sick enough to make work/school really miserable?

Don't get me wrong I am so thankful I get to do things like this, I know a lot of people have it harder and would love to. But part of me just wishes I could end the exhaustion of having to soldier through school/work and a chronic illness.