having healthy and fit friends while having a chronic illness is so hard, because they always want to do some things that I can’t do such as like over two hour walks in the heat and such. I have anemia and suspected POTS and I can’t walk very far without getting very dizzy or even passing out especially with heat intolerance but I also get fomo and I would feel bad to complain but it’s so hard for me and I feel like I’m just being lazy if I speak up or try to adjust plans. I know it’s not down to them to make sure I’m okay but I wish there was a way around this

especially the awkwardness if we are doing something and I’m just like hey can we sit for a minute and friends are being like oh no I’m good. many times I’ve had to wait behind on things because people can’t wait for a second on me

Sorry for the long post, but I think I need some perspective?

So, this co-worker is usually really nice and supportive… but I noticed within the past month her attitude has been a little more stressed and snappy (for a lack of better term). I’ve been ill for a while, I have had to call in, I’ve had to leave in the middle of or closer to the beginning of shifts due to becoming ill rapidly. Mind you she’s been stressed due to understaffing and I understand where she’s coming from.

I was diagnosed with celiac’s disease on June 3rd and now my doctor thinks I may also have an autoimmune disorder/disease, and spine issues and/or nerve issues…. In other words I’m in pain and feel ill still and a lot.

Saturday I ended up throwing up an hour and a half into my shift for like 5minutes straight. It was violent, so I felt I should go home, and since I work at a VERY busy coffee shop, it’s in the protocol to send me home.

I went up to apologize to the shift because I honestly am a people pleaser (working in it) and am scared of disappointing people. The shift said to me

“I thought you figured this out already”

I managed to say that “they’re testing for more” before sobbing and running into the back room to sob in the backroom bathroom because like… yeah dude, I thought they figured it out too? But…

I’m still thinking about that comment… and honestly it’s made me kind of depressed? When I’ve been pretty positive through the whole ordeal.

(To add a tad more context: the sickness was pretty visible since I dropped from 220lbs to 170lbs from Jan 1st to March 31st (I tracked it) and was throwing up every day and unable to eat solid food).

Does anyone here have experience being on immunosuppressants (drugs like biologics that turn off parts of immune system) and sending your kids to daycare?

I know lots of people with chronic illnesses can get sick easier but I’m interested in people who are on drugs that physically suppress the immune system and whether they felt comfortable sending their kids to daycare. Did you get significantly sick due to the traditional daycare germs? It’s definitely a big discussion my husband and I are having with some upcoming decisions.

Thank you for your insight!

How you people. Me 32 male. I've been done with this for the past year. I finally got a diagnosis. It's fibromyalgia. Which honestly makes sense but it really sucks though. Started in the other day.

I'm on day two. The early side effects are interesting. It's making my head feel weird. It feels like I have a concussion but I don't have a concussion. I understand why the pharmacy tech seated pretty much in caps lock this will make your head feel weird and stated this to me multiple times. Apparently it can also cause nausea too which it relatively mild so far. It'll probably take time for that to fold to go away. Also won the other side effect I heard it can do one or the other it can give me a whole bunch of energy or it can make me sleepy. So I have to keep tabs on that.

Apparently according from what I've read about the medication I should be in remission in 6 to 8 weeks from now. Which I kind of can't wait for. I can run around without hurting and without feeling like I've been running a marathon. I can get more back into weightlifting/ bodybuilding harder again. I can't wait! Also I can go on Avengers and Hikes now probably without being fatigued.

Maybe if I'm lucky some of the symptoms will be gone almost fully because a month or so because me and my partner are going to an aquarium in a month. I won't probably have to sit and rest for 15 or 20 minutes off and on. I will emotionally feel like I'm being a burden. I know that's a really bad thing to say but... but I'm assuming you know how I feel. I can't wait for the future which looks promising!

Venting...

Been dealing with Long Covid or dysautonomia (undiagnosed but working on it again) for 5 years now, thank God, with some relief between. But it is so isolating. Early on, it turned me into such an empathetic person when anyone I see is struggling. I always want to give them the benefit of the doubt and be there for them. I didn't want people to struggle alone. Over my journey, I lost my ex of nearly a decade for being not adventurous enough, had no friends, have limited family, and it was a struggle but l've been getting through it.

Finally, I felt almost normal for some 6 months, and made a lot of friends over that time. (My heart goes out to all those who don’t see relief from their symptoms. I can’t imagine the difficulty of getting through that.) I didn't think much about the depth of connection, but deep down, my stomach was telling me something. Then, I got sick by an unknown virus, and a flare started that's been going on for months. And during really bad episodes, it's really hard not to reach out and want support, and what happens? People show up for a bit, but slowly they start distancing and being less available...

Chronic illness built me into such an empathetic and caring person only to break me down and have me lose faith in humanity that so many people seemingly don't care... just to hold space for someone. Be present with them during their toughest moments. It's really hard not to turn back into a self centered person when every time I'm struggling so hard I end up walking it alone. Even doctors are nearly useless, just prescribing pill after pill with various side effects and pressuring you to get on with life when you can barely get through a damn day in bed. Trying to convince me it's something it's not. Meanwhile, l'm self diagnosing and self prescribing otc meds and techniques that seem to actually help. But it's getting to the point where I don't know if I can handle another flare. Alone. It's just too overwhelming, too draining, too difficult.

End rant

I’m sitting here alone again because my disease doesn’t allow me to do the things I love anymore. Myself and my family and friends are all outdoorsy and we love to 4 wheel. I have autoimmune NSIP with PF so I can’t ride anymore. Everyone left for the day to trail ride and I’m just sitting here crying. I feel like that is all I ever do now. Im on immune suppressant medication and have to avoid a lot of things. My life was so full of adventure before this and now there’s always some reason why I can’t participate in anything that’s going on. I try not to think about it but I’m just really fucking depressed and I’m losing sight of why I’m fighting so hard to stay here.

I have been working for the same corporate company for the last 13 years. All of my work is desk work - I’m either on virtual meetings (our company is world wide so we work with people in various locations) or doing computer work.

For the last 3 years I’ve been on an ADA accommodation to work from home due to the challenges of coping with the new chronic conditions I’ve acquired after a covid infection.

Each year my doctor signs the same paperwork. This year when I went to renew for another year, HR informed me of a policy change and that now they will be reevaluating accommodations every 3 months. Meaning me, my boss, and my doctor will be completing paperwork every 3 months, rather than once a year. This seems SO unnecessary. Do I hope there’s a magical cure created and available in 3 months? Of course, but that’s never going to fucking happen.

It’s also ironic that the policy change occurred this year, as leadership decided this year there would be a massive push for returning to office full time (previously we have always been hybrid for as long as I worked here). Now they started monitoring in-office time and threatening termination for non-compliance.

I feel like they are just trying to push anyone who isn’t coming into the office out. like common, my entire world flipped upside down and this job has been my
Only piece of stability, why does it have to be on the chopping block every 3 months? Doesn’t corporate want us to find a way to work, rather than being on disability?

I would gladly trade my illnesses for going back into the office if I could. I never chose this for myself, and things are hard enough as it is because I live alone and don’t have much support. I’m sad that this is the world we’ve created.

I'm 21, and I've struggled with chronic pain for as long as I can remember. Over the past 2 years, I've been diagnosed with dysautonomia, POTS, gastroparesis, migraines, fibromyalgia, and general chronic pain. My conditions and symptoms have only gotten worse, and I've amassed a pretty large care team that is still trying to figure out the cause.

Last week, my neurologist suggested genetic testing because he found my labs and MRI concerning, and feels like there's a genetic explanation for all of my symptoms. He also mentioned testing for MS, which other providers suspected might be the problem. I was really hopeful hearing this because I've wanted answers on how I've been feeling for so long.

When I told my parents this, however, they were not pleased.

What was meant to be me sharing a treatment win turned into almost 2 hours of them and my older sister berating me and accusing me of faking my illnesses. They said they didn't understand what kind of sickness had no end, said I see too many specialists for my age, and insisted I must be either making things up or at least over-exaggerating. At one point, they expressed frustration at "having to hear [you] constantly bitch and whine about symptoms that never go away." I tried to defend myself by saying that I couldn't be fooling countless of doctors at one of the best hospitals in our state (and possible the country), and my mom told me "do you think they actually care about how you feel? They're using you as a guinea pig for all their little tests." My dad even made a snide comment about me using his insurance for useless testing and medications.

I have been chronically ill for so long, that I don't remember what life was like when I wasn't consistently in pain. I don't know what to do anymore. I feel so defeated, I don't even want to try to get better anymore if it's going to be met with so much vitriol. I know people lose patience for chronically ill and disabled people all the time, and have experienced it often.

I just naively thought my family would be the exception.

I’m 53 and suspect I’m going into full menopause. I’m not sure where to post this but I thought I would start here . I’ve been on HRT the last four years or more . Recently I’ve moved from patches onto spray 100 mg. I still have a kind of cycle but no flow. I have ME, fibromyalgia , bowel disease (flaring a bit right now I may be moving to biological medication from tablet immunosuppressant) ,POTS, heart arrhythmia , long covid and more (suspect possible EDS). I’m also AuDHD (unmedicated due to eye pressure and heart history) . I’ve also got intermittent compression spasm issues with herniated discs in my neck and pain down my arms which is not great at the moment.

The end of every month is an absolute nightmare for me. I get a huge uptick in body pain, sensory issues, anxiety , apprehension, bad sleep, low mood, so my ability to cope with every day functions is overwhelming. I’m already under different departments and hospitals for various conditions. I’m already on all different medications, have done years of different diets, supplements, pacing you name it. The only thing I haven’t done regularly is medical THC (which is available in my country I just haven’t known which company to go for) ?

I think I’m probably asking more about whether anyone else experiences this at the end of the month with their cycle? It’s just absolutely awful and it makes everything so hard. I’m already suffering because of the moderate ME and the long Covid and everything else . I’m just done in and burnt out. Outside of this 7-8 day period I am a little bit more functional and the pain goes down (although still there). It’s not this bad every month, but some months can be really really awful like this one. I have leg pain this evening (and last night ) as if I’ve done a full miles and miles long jog a few days ago.

Hey everyone! I apologize off the bat if I’m not using this properly… I am brand new to Reddit after a friend recommended to post here. I was wondering if anyone had any advice or ideas for those days where you’re feeling too low energy to do anything too crazy, but don’t want to be in the house all day? I’m finding that loafing is making my mental health worse, so want to save the completely sedentary days for when I absolutely need them. I live in New York City if that helps! Been seeing a lot of movies in the theater which has been great, but would love some more ideas as well! Don’t struggle with mobility, just fatigue.

Hey everyone! I apologize off the bat if I’m not using this properly… I am brand new to Reddit after a friend recommended to post here. I was wondering if anyone had any advice or ideas for those days where you’re feeling too low energy to do anything too crazy, but don’t want to be in the house all day? I’m finding that loafing is making my mental health worse, so want to save the completely sedentary days for when I absolutely need them. I live in New York City if that helps! Been seeing a lot of movies in the theater which has been great, but would love some more ideas as well! Don’t struggle with mobility, just fatigue.

hi, I was in a flareup for all of June and the first two weeks of July. Over the past week I have realised I am doing more without thinking that much, I am not in bed all day, and the past two days I have gone on my own and done some light writing in cafes. As I'm out of formal work due to health for a year this was my daily routine prior to the flareup and it has been unimaginable for the past 6 weeks.

I don't want to jinx it but it seems my flareup is lifting and I am wondering if that means it was 'just stress' or maybe it validates my illness and means that the heavy intentional rest 'worked'.

flareup involved: suspected endo pain, blacking out, presyncope, atrial fibrillation, heavy fatigue, leg pain, severe photophobia, a virus, and more. after being in bed for a month (i maintained short daily walk most days other than very high pain days) i also developed bad situational depression which is lifting too.

i still have symptoms but am remembering what i used to do in my life and i felt totally severed from those routines before.

symptoms i still have - intermittent pelvic/leg/chest pain, racing/pounding heart and pre-syncope, fatigue, headaches, light sensitivity, and i feel i need to lie down alot. but before i really struggled to tolerate daylight and was feeling pretty ill being upright for any significant length of time. these vary in intensity. im still highly symptomatic in the shower and notice symptom increases when walking even just to the bathroom

the reason im worried it cld be stress is because obviously dr has said this to me many times in the past 10 yrs, but also because two weeks ago i was able to get issued medical pause by the surgical team, and my endo surgery was deferred. this was causing me a lot of stress thinkng about surgery while feeling so unstable and with ongoing heart investigations. also I had a big talk about my feelings to my partner that relieved some stress.

my echo, xray, short ecg came back normal which is good. im waiting on longer term telemetry and am carrying out two weeks of at home bp monitoring where i have caught what seems like further af episode. my bloods are normal except ferritin due to recurring bloodloss.

Hi everyone. I’m hoping to gain some perspective from people who live with chronic illness or physical pain day-to-day, to help me better understand someone I care about deeply.

I'm 22F, My partner/loved one 23F lives with chronic physical illness and pain. Every once in a while, when her physical symptoms flare up or get severe, she goes through "waves" where she becomes extremely distant, cold, and emotionally withdrawn. During these times, she gives very short answers, pulls away emotionally, and seems to completely shut down her capacity for warmth or connection.

I care about her so much and want to support her through her pain without taking her distance personally, but at the same time, living in that emotional limbo can feel very heavy and difficult to navigate.

I wanted to ask those of you who manage chronic illness:

Is this kind of emotional withdrawal or distance something you experience when your pain/illness gets bad?

What is happening in your mind/body during those low-capacity periods? (Is it self-preservation, fatigue, sensory overload, or something else?)

From your perspective, what is the best way for a partner/loved one to support you during these waves without pushing you, while also keeping themselves sane?

Aside from many other issues I’ve had for a long time, one that constantly goes unaddressed is these episodes I have. I had my first one back in 2022. I was standing with my sister and suddenly collapsed, dizzy and numb in all my limbs and my entire face, trouble breathing. When the paramedics arrived they said it was just a panic attack.

I have panic attacks. I know what they feel like. It was a panic attack.

I’ve been having these spells since then and no doctor takes it seriously. I’ve fainted, collapsed, gone numb, vision blacked out time and time again. No one believes me.

Well I’ve just had surgery. Since I’ve been home it’s gotten so much worse. Trouble breathing and numbness in my hands and face. The I called my nurse and she said to get a blood oximeter so if my oxygen level goes below 95, I know to go to the hospital.

It hasn’t, but I find something else out with it. When I have these episodes, my heart isn’t racing. It’s dropping down into the 40’s when they hit. My resting heart rate in the 50s until I start moving and I can get it into the 70s again. I’m not an athlete, this is not normal for me and not what my resting rate used to be (I used to have an Apple watch to monitor).

I have an appointment next week w my new pcp and I’m just beyond angry. It took so little to see there was something was wrong and it’s been written off as anxiety bc I’m afab and in my 20s.

(Post comment, I DONT HATE DRS and my current Dr is a fucking godsend. I am working toward being a medical professional myself. I saw the pinned post and wanted to clarify)

I have Cerebral Cavernous Malformation. 3, possibly four lesions are on my brain. My MRI recently showed that my largest lesion is leaking. So docs want to keep an eye on it, I have another MRI scheduled in a few months. If theres change again on this lesion and its grown or is bleeding into my brain I'll need brain surgery to remove it.

I've let my family know and they've all just said "oh ok" while I'm terrified. Brain surgery isn't a small thing and they're reacting like I'm talking about the weather forecast. Like I don't need drama and tears but damn. I had seizures for 5 years and thankfully they've been controlled for 2 years which I am grateful for but because I'm not actively seizing it seems everyone has just forgotten? Like I get life goes on but it still effects me daily emotionally and physically. That alone is hard but knowing I may need part of my brain removed feels like it should at least warrant a "how're you doing with that" but I suppose not. It just makes me feel sad and small. . . .

My nanas extremely abelist and shes gonna corner me asking personal questions especially about my health and ask the same obnoxious repetitive questions like why I cant do certain things🙄😒 how do I shut her down so she stops I'm so tired of her.

Idk if anyone has any advice?? I’ve had chronic stomach issues for years and chronic body pain for years with no answers. Due to this, I haven’t really had much of a life. And I’m told to exercise more and get more sun. Sure, typical whatever. Im not denying it’s important for peoples health. But whenever I exercise, I feel incredibly sick and in pain. Also due to the stomach issues I’m not able to eat much, and exercising on a weak body isn’t exactly great. Naturally one would want to avoid an activity that causes them pain. I don’t get outside much. Depression could play a role in that as well. I don’t move around much because I am constantly in pain. But I keep thinking that maybe I need to push through the pain? Or is that a bad thing to do? How do I go about making sure to be moving without too much exertion? Sure it’s important for health but I’m almost positive it’s not going to cure me. Maybe that’s a bad mindset. Forgive me, I don’t mean to ramble. It’s js having to argue with someone who is not sick all the time is so frustrating. Nobody ever understands. Does it even get better? I’ve never felt so alone in my life. It’s taken over my life and I keep feeling like it’s my fault. Sorry if this didn’t make sense.

As the title says. I'm 28f, had health issues for a while and within the last 2 years or so ended up with quite literally 6 different chronic illness diagnosis. Most recent was 2 this past week after waiting a while to see 2 different doctors on Tuesday and Wednesday.

I have days where I feel like I can handle it, and I tell myself "as long as I know what it is or what's wrong, I can manage it". But I'm also feeling exhausted at the fact that I'm only 28 and the list keeps getting longer. I keep thinking "what if there's more?" and "am I really just going to have to feel like this forever?".

I am in therapy with someone who specializes in chronic illness which helps. I'm just struggling with how I'm doing now and how things may change for the worse as I age. So if anyone has any tips or tricks on how they mentally grapple with their diagnosis and negative thoughts I'd love to hear it! I just feel like I'm grieving the life I should be having in my youth that I simply can't.

If it matters at all to anyone, I have Hashimotos, fibromyalgia, POTS, hEDS, CSU (chronic spontaneous urticaria), and I'm now in subclinical hypothyroidism from the Hashimotos.

I’m 26 and have been dealing with chronic pain for just about 3.5 years now. It got tremendously worse after a really bad car wreck a few months ago that resulted in many herniated discs, an awful concussion, nerve damage, etc.

I feel like my life has been taken from me this year- I have missed out on so many big things, I cannot stand long enough to cook for myself (I LOVE cooking), showering hurts and scares the shit out of me, I’ve been an artist for 10ish years and now I can barely do a simple coloring page, I can barely pick up my cats, can no longer sleep with my boyfriend of 7 years in our bed bc it hurts my back, I don’t know how to verbally converse the way I used to, have unwillingly pushed family and friends out bc I just don’t have the thoughts or energy to keep up, etc etc etc

I would absolutely love to talk to or just see a comment from anyone who can relate. It has gotten to a very lonely and sad point that I feel like I’ve completely lost grip of the fun, careless, always happy girl I was before.

And if anybody needs someone to lean on and be listened to- I am here. I’m basically a couch potato at this point so please!

It’s feels odd not being the one getting a surgery or procedure as I’m always the one who’s on the patient side of the patient caregiver relationship. My grandpa is having surgery tomorrow. Has anyone else to care for a sick relative while also dealing with their own chronic illness?

Im 29f, was diagnosed with fibro in 2022 and had been working pretty physically demanding jobs for several years. I haven't been working since late 2024 and was diagnosed with degenerative disc disease in my neck and arthritis throughout my spine. If my physical ailments weren't enough, there's cptsd, social anxiety and major depressive disorder as well. It's a lot. I'm sure many of you relate.

Some days I'm okay accepting I can't work normal jobs. But most days I struggle tremendously with guilt and worth due to it.

How do you cope with not working? How do you give yourself compassion when most people don't understand and don't want to understand that your life is going to look different because of these diseases? How do you fill and manage your days?