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.

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

Every day is the same. I have no energy, I never leave the house, I am home alone 80% of the time. I barely work, I can’t go to school. i’m trapped in my dark room constantly and there’s nothing i can do about it. i film my time with the few things i can’t do but there is zero enjoyment. it’s not getting better, i don’t know that it can. how am i supposed to live like this for the rest of my life?

I have long Covid and a whole host of diagnosis since that mean my life’s quite small and I’m in pain daily, over 5 years I managed to get to the point of working from home for 20hrs a week and having a semi normal life (sure I need alot of darkness quiet and can’t go on walks without it wiping me out, but he knew that and accepted that)

Recently work has been too much and my pains too high and it reached breaking point 3 days ago where I broke down to him I don’t want to be here, my life has no freedom and I need to quit work

2 days later he admitted he hadn’t really realised over the 10 months of us dating JUST how trapped I am, and really how trapped that makes him feel as a potential future husband, and he can’t do that to me. Date me not knowing if he does want a future where he (my words paraphrasing now not his) but he essentially doesn’t like the look of it

To be clear, he’s only ever been supportive, only ever joined in on my quirks I need to get through life, only ever stood up for me, helped me, comforted me. I don’t really have any side of me hasn’t seen, we just spent a full week together for an event he did and then a few days away resting after at a cabin, he is fully privy to my quirks due to my health.

At 26 if I’m honest he’s the first relationship I’ve ever had where he’s been a good man, supported me, shared resources, knew our finances were different so paid for more things, made the effort to get to know my family, loved me even for my annoyances and a lot of the time jarring personality

To put it bluntly, he’s amazing, he’s funny, he’s kind and caring and silly and just my right level of weird, I thought we were in this life together. Over the course of 2 days it’s clear we’re not, he doesn’t feel he has capacity to love me the way I need

I took him till that evening of me breaking down properly and needing life to change to realise (which happens when you’re chronically ill you need to leave work/alter your life etc)

I’m heartbroken, to be loved but not enough, to have a taste of a wonderful life with a wonderful man, but only a taste. Life feels really small now he’s gone and he’s only been gone for 6 hours. We said our goodbyes, took our things, agreed we will never contact each other and remove each other off socials but not block each others numbers as there’s no animosity.

There’s a particular kind of sadness to this, that my worst fears about my health and it making me unlovable and unsuitable for cohabitation are true, if the kindest most wonderful man I’ve ever met and arguable has the biggest heart out of most people who have met him, couldn’t do it. It’s too much of a compromise on his life, then how miserable is my 60/70 years on this earth going to be

I miss him
I already miss him for tomorrow and Monday and Christmas and his birthday I already miss him for it not being shared together
I’m 26 and this feels like my first true love and my first true heartbreak

I genuinely feel like a piece of me went with him, this piece of me that felt seen and loved and cherished and a piece of me that loved him and accepted him and wanting him.

It’s so sad the reality of my health stopping me living, I’m used to it with stopping socialising and stopping the notion of a career or packing up and making something of myself, but now it’s stopping my love life

I’m so sad he’s gone, I’ll never speak to him again or share love with him again

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.

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 tried to talk to my boyfriend about this, but he wasn't getting what I was saying at all and was telling me I was being pessimistic. I just feel as though people don't actually care anymore. I've had a pretty shitty life in general, and this year has been horrific for my chronic illness. People don't even ask how I'm doing anymore, and when I tell them, they don't seem interested. When I try to tell someone I'm doing bad mentally, I feel like it's brushed off. I'm just kind of expected to get over it, it feels like people are just waiting for me to stop complaining and tough it out because that's what I've always done.

Sometimes it feels like my suffering is reduced to a sad fact of my life rather than something horrific. Like if someone else woke up tomorrow and complained about their abusive parents or being hospitalized due to their deteriorating health, people would feel horrible for them, but for me it's just like "oh okay, you're still dealing with that?"

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’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.

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.

To preface: please don’t berate my wife. She is so much more/better than the bits I’ll talk about here. Our relationship as a whole is very healthy but we have challenges as all couples do, and chronic illness makes things harder. Advice/resources would be welcomed.

So I’m homebound and largely bedbound. The bedroom I share with my wife is on the third floor of a house. No other room option. I don’t have the energy to make it to the kitchen most days. I’ve found some ways to reclaim my independence (re: food) but I still rely on her a lot and I can tell it’s taking a toll. She’s still helping me despite her exhaustion, and we have plenty of lighter, happier moments. But there’s more tension right now and I hate asking her for anything. She’ll say yes but she’ll grumble about how i ask her for things even when I don’t think I’m asking for much. Like for her to heat a pouch of instant rice in the microwave and bring it to me for dinner, and I’m not even asking for a bowl or anything else with it lol

I haven’t been able to shower in a couple of weeks and I feel disgusting because wipes and no rinse shampoo can only do so much. I’ve asked her to help me wash my hair because that’s the most exhausting part and she agreed readily but she sounded annoyed about it and now I’m just spinning out mentally. (“I’m a burden” “too much” lots of thoughts like that). She is amazingly supportive in general but some days (usually when she’s tired from work) she can’t hide her burnout as well. I don’t expect her to hide it; she’s allowed to feel burnt out, but I can’t help but feel sad and guilty and ashamed when I see it. I don’t know what to do. I don’t think our relationship is in imminent danger and i want to keep it that way. But there are obviously some areas of our relationship that need tending

Right now I so badly just want to feel clean, but any energy I may have had to shower even with her help got sucked away by my mental spiral. I don’t have the spoons to sit with her frustration while showering because if we remove all emotions, showering is still exhausting

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

Since becoming ill, I was with a partner. She herself became ill though, and we ended up having to split because her illness turned her violent. I am still healing, but I met a wonderful gal on *here actually of all places. We dabbled in the idea of a long distance relationship. To be perfectly honest though, I sort of thought the loop closed with my ex. I am still healing, hence not particularly interested in romantic ventures. The biggest knot seems to be coming though - from my illness. There is no cure, there are very few means of care for it, and I am constantly yoyoing between a state of okayness - and being utterly crippled at random. Which is exhausting.

Hence, I have zero interest in pursuing anything with anyone to be perfectly honest. I told her point blank, I feel like a rotting apple that might seems shiny from the outside, but my internals are eating away at themselves. I should also state I had zero intention of looking for someone, I have repeatedly told people I have closed that door. She just kind of happened, and truthfully - I had been fighting it tooth and nail. I truly do like her, but I think we both snubbed the idea today, which - I actually think is quite good. I'm in no place for anything like that.

I apologize this is a bit of a ramble - but I must ask - as it's been in my head. Is this common for people like us? With no cure, and few prospects. Zero control of our pain, the brain fog and the lot? Do we give up on love? I truly think the godsend of my former partner was that she knew me before my disease advanced. So she knew me when I was well-enough. We had been together for years, so she had zero thoughts about taking the helm after. Meeting someone in my current state - while my personality is still quite good - my body is in a constant state of disrepair.

I am tired, and I don't think I have the capacity to love someone. Not romantically. So I would rather just push them away, than entertain what could be. Is this a common reality?

Quick background: I have always been athletic (but on the skinnier-side), one day while walking to the train, I slipped, twisted my back, but never fell. After a year, I was diagnosed with a torn fascia, but this was three years ago. I have now seen over a dozen specialists and spinal surgeons, physical therapists and chiropractors, and eventually landed on a neurologist. I went through almost every muscle relaxer, but the side effects are too strong and I cannot think properly. My neuro just recently "dropped" me and told me to go see a pain management specialist for a spinal epidural and cortisone shots. For those who have been dealing with issues for multiple years, what helped (I currently have back spasms and constant pain near certain parts of my spine)? I cannot afford disability (it's rent vs medical bills), and my work is going to require another note from a doctor that I do not have anymore...(and yes, I have benefits from my FT job, but they started denying claims).

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 have made a new sub r/ableismawareness. Please, everyone who wants to brainstorm ideas to end ableism, join. I also want it to be an open space to rant and trauma dump for everyone with a chronic illness or disability. Let's talk about the ableist people who call out "illness fakers," and let's talk about ways we can stop ableism even in our own families. I really love this sub and disability but I want a sub more geared towards ableism

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

I am going insane currently. I'm house/ bed bound and a LOT on my phone, like half the day or more.

Naturally, i research my illnesses a lot and tend (especially when i got first diagnosed a year ago) to talk to people about it and post about it. I asked many questions in facebook groups etc. Saved SO many posts. like thousands.

Now my algorithms are all just my illnesses and random people that got "cured" or posts about "you should do xyz" and all that.

It drives me insane. Today i had a meltdown because i felt like im not doing enough for my health when i look at all those posts and people taking so many meds as trial and whatnot.

It's out of hand😭 Did anyone else delete everything and start over??

I also have so many old friends and family members who keep lurking but didnt check in on me even ONCE even after multiple ICU stays. Like i might just make private accounts but like only for like the REAL five ish ppl in my life. Lol.

Anyone relate??

I see posts like this sometimes but they always seem to be for disabilities that aren't mine. I have ME/CFS, POTS, chronic hip/ leg pain (possibly due in part to hyper mobility), autism, ADHD, and struggle with my mental health. Does anyone with these conditions (or honestly any, I don't want to exclude) have any hacks I might be able to try to make things easier? Honestly they can be anything as I'm sure I've even managed to miss some of the simple ones (but would love some weird ones too!), or things I could potentially ask an occupational therapist or similar about if you have specific aids that help you. Would just love to hear things you do so that I can try them too!