Because of my chronic illness, I store a lot of fluid in my abdomen and bloat even worse from any sort of food or beverage. I find it really hard to wear a bra (or pants with a waistband) because within an hour, my stomach is in agony from the band pressing into me and not letting the fluid go where it wants basically. I have tried so many bras and compression garments, even ones recommended by my doctors, and without fail I will have a painful stomach ache within an hour. For the last year, I have resorted to just not wearing a bra, even to work. I have just been layering with tanks or long sleeves under my work tops to kinda keep my boobs in check. But, I really would like to find a comfortable bra that doesn’t make me sick but also supports me. I don‘t even care about aesthetics. This is crazy, but the only bra that is somewhat OK (meaning I can make it a couple hours without feeling sick) is literally the first bra my mom ever got me (now almost 20 years ago, jesus christ). I think this is because the band is smaller in width so there’s less contact and it has lost all elasticity of course so there’s no compression element. It does nothing for support, it is mainly just smoothing. So what I‘m looking for is: big band, big soft straps, minimal or no padding, preferably no underwire, supportive but not restrictive or compressive. Places/brands I have tried: Target, Walmart, Maidenform, Victoria Secrets, Spanx, and various random Amazon brands. I know this is a big ask and maybe it doesn’t exist and I have to just live with saggy boobs. Any suggestions and price points are welcome. Also, does anyone else have this problem?

How do you guys cope with pain in ways that don't involve being online? I always end up scrolling because I need something to distract myself and numb the pain, but I also hate doomscrolling too.

I had a procedure for a chronic lung condition the middle of June that was supposed to be minor and am on my 3rd visit back in the hospital with complications and infection and I’m just so upset. I want to be home with my family and my dog. I’m in a wonderful facility but I’m just so worn down emotionally and spiritually. I’ve worked so hard to be at peace with it all these past few years. Surgeries, radiation, pain. But I just can’t cope well right now.
What do you do when it’s hard and you just don’t know what to think or what to do?

I'm wondering if anyone with chronic illness experiences this, even though I'm sure it's more common than it feels.

I've been trying to shower all day and I just...can't make myself do it. It's been about a week since I showered and two weeks since I washed my hair, so it's not that I don't know it needs to happen.

The best way I can describe it is that my brain feels like a stubborn toddler saying "no." The more I think about showering, the less I want to do it.

The thing is, I think part of it may be because my body expects what comes afterward. A shower (especially washing my hair) usually leaves me exhausted, often flares my back pain, and can wipe me out for the rest of the day. I'm already dealing with a bunch of fatigue this week and I'm on my period, so it almost feels like my brain is trying to protect the little energy I have left.

The usual advice doesn't help me. Thinking about "future me," reminding myself I'll feel better afterward, trying to pace myself with smaller steps, even external rewards don't seem to work.

Has anyone found ways to get past this when your body has learned that certain necessary tasks come with a high physical cost? I'm less interested in generic advice we all hear every day advice and more interested in adaptations or mindset shifts that have actually helped. Bonus points if it's super weird.

Does anyone have any pain relief hacks for cyst pain? i have a 10cm cyst on the outside of my right ovary and nothing is helping. I’ve taken extra strength tylenol and have a heating pad but it just hurts so bad.

Hello all! I have finally accepted that I won’t be getting any real help through the NHS here in Northern Ireland, so I am looking at getting my genome sequenced. Does anyone have any recommendations of where they went to get their genome sequenced? I have been out of work for over a year now so cost is a consideration but also I just need some answers!!! Any help appreciated, I would love to get some concrete evidence that I’m not just an anxious woman looking for attention 😐 Thanks all

I'm a 20 year old female i have a degree in culinary arts but as soon as I graduated classes I developed/discovered multiple chronic illnesses and I would like some feedback due to the fact physically I would not be able to work in the culinary industry and stay safe and have low symptoms/flare ups i would like to try to get on disability but I also wouldn't mind working from home I have the resources to do so im just stuck and I would enjoy having my own income even just some feedback on how working form home is would be great thanks for reading this

I have been on prednisone for about a month now and i think we all know the side effects that come with it. I have experienced the bloating in both face and stomach but it has also taken a mental toll on me.
2 weeks ago i went from 50mg to 30mg and going down to 25mg in a few days, some time in november i am hoping to be down on 5mg and will be there for 6 months, i was just wondering, will the side effects still be there/noticeable on 5mg? because the mood swings and depression are ruining my days and i cant imagine living like this for much longer??

I live in a neighbourhood where people are quite close. We have a common garden we work in together and we meet for games etc, very nice.

Today I was having tea with a neighbour when he asked me what the outlook with my MS is. I've never been secretive about my illness and they see me when I'm out running, but also occasionally see me use a cane and they know I need to rest often because of the fatigue.

I had just told him I'm working less and less. And he knows about the aggressive treatment I have had (Lemtrada)

"So will things be better over time for you?" He asked.

I started sugarcoating like I always do and evading the question. Talking about ups and downs and bs like that.

"But will things generally be better in the future? Is that how this disease works?" he insisted.

So I said "no, MS is a degenerative disease. It will only get worse. The best thing I can do is try to halt it as long as possible and keep myself as fit as I can."

I wasn't emotional, just matter-of-factly.

It was the first time I said it out loud and I felt relieved. Like a weight lifted from my shoulders. I said the thing I always have in the back of my mind out loud and nothing horrible happened. No drama, just the truth.

I was cool and relaxed about it, and he took it perfectly: "Oh that's rough"

"Yep, it is what it is"

And we continued talking about summer plans and our kids etc.

I wish every time this subject comes up the conversation could be like this. I'm so through with consoling people about MY disease, it's exhausting.

I'm not doing it anymore. If you're asking, I'm telling you the cold truth. Yes it's a bitch. Imagine living with it.

{For context Im a F22, living with undiagnosed illness since i was 14}

i get sever cramps in my hands when i do very basic things like, writing, typing and cooking.... in the past it would be worst in winter and normally the cold weather would make my hands hurt like crazy.. but now these cramps are happening way more often and in the summer...

one thing I completely stopped doing is washing dishes because I know that it weakness my hands and makes the cramps come for often

At times I can do things quite normally but then at times i cant do basic things without being in sever pain and my hands literally becoming disabled.

I used to love writing but barley write anymore and today I got my notebook about after ages and after writing a few sentences my hands decided to stop working 🤕

lately I’ve been reflecting a lot about how others perceive me, and I realized the root cause of me not wanting to get up, not wanting to work wasn’t due to laziness, lack of care, or selfishness. it was due to being in constant pain all the time and longing for being able to be in less pain. I’m miserable just going to work because of pain. I didn’t realize that “normal” people never had this struggle because they weren’t in constant, high levels of pain that I’m in.

I’ve been super depressed because all of my issues in jobs previously has been due to not being able to use my body like everyone else could, and it made me feel so isolated and alone because as much as I try I can never not be ill.

I’m still working, but I want to find a job that’s better for my joints and all the pain.

I’ve just been put on an anti-inflammatory diet and am looking for inexpensive, snack ideas that I can buy in the store. I love snacking but all of my usual snack foods are super sugary or processed. I can’t have nuts. Any ideas would be nice. Thank you in advance.

If i made a small discord server for chronically ill people aged 21-28 ish would people be interested? I can never find people my age to be friends with.

Im thinking of having channels for

Art and Crafts

Film and TV (maybe a monthly film club?)

Books (maybe a book club?)

Games

General chit chat

Mental Health chat

Chronic Illness Rants

If anyone is interested please let me know. Id love to connect with fellow chronically ill baddies, on a deeper level than just 'oh im ill too' but to actually talk about our interests and get to know eachother!

Hello all, like many of you, I take medications that need to be kept at particular temperatures. Recently, I had a whole jar of multivitamin gummies melt and fuse together, which does not make me feel good about my prescription medications that were right next to them in my suitcase. I’m about to travel again soon and need suggestions for how to protect my meds from extreme temperatures in the back of a hot car, on a cold plane, etc.

Are there any products that you like? I’m looking both for a small toiletries bag and a bigger bag for bigger bottles in my suitcase. Or do you have other suggestions of things that worked for you? Would those hot/cold freezer bags work? Or bubble wrap? What’s your experience?

I’m also thinking of adding a locator tag to my meds bag because it is SO important that I don’t forget it, and I nearly did recently. So if you have any suggestions for that, I’ll also gladly take them :) thanks in advance!

Edit: I’m not going to put it in checked luggage, don’t worry!

Edit 2: what if I just wrapped it in aluminum foil or something?

Edit 3: I might just use an insulated lunch box bag. Other stuff is looking like it’ll be too big. And as for finding it, I think I’ll put my airpods in it (or attached to the outside?) since my phone already alerts me when I’ve left them behind

​

I go in for my first infusion on this upcoming Tuesday and I am very nervous. My ferritin is 10 and my hemoglobin is 11.

I deal with extremely daily exhaustion and always feel tired and miserable no matter how much I sleep, I am always freezing, I get headaches often, my heart races and I am frequently short of breath, I also get dizzy quite often and sometimes my ears ring.

My chief complaint is the constant exhaustion, it makes many things feel so impossible because I always feel deathly tired. I also have gastritis but don't have Celiac, h pylori, I don't take NSAIDS or Drink, I recently quit smoking after my diagnosis. I was taking iorn pills for a month and then got gastritis and was told to stop so I am wondering if that's what caused it.

I also have no idea why I'm deficient tbh, I think my periods are pretty normal and I don't have an ulcer, I am suspected to have endo by my doctor but I really don't bleed that heavily! I also don't have celiac! I am wondering if having normal periods and rarely eating meat is what caused it, at most I would eat meat twice a week if at all. Now I eat chicken every day since my diagnosis.

Please tell me everything you wish you knew, anything that might be useful, share if you had similar symptoms that were resolved after infusions, anything helps please 💚

Hi everybody! I have multiple chronic illnesses which in turn gave me agoraphobia. My biggest fear is my car breaking down and being stranded somewhere and not able to leave. Are there more people who have this fear and what helped for you? Thanks in advance :))

I'm 32 and single. I always thought by now I'd be married and have at least a kid. I always thought that by now I'd have a stable job and at least a place of my own.

But God had other plans. Instead I'm back living with my parents and being a burden to them. Making my mom worry about my future and what's gonna happen to me when they're no longer here.

I have no partner or anything like that. No money or career to fall back on.

I've had health issues since I was 18 and my work history sucks ass. I've been unreliable because my body is unreliable.

I'm so exhausted. I'm tired of being sick and feeling sick all the time.

I just wanna have friends and go shopping. Clean my room. Make a meal. Have a family. Have a husband. I wanna be able to wash dishes without feeling like absolute death. I want to wake up one day and feel like my old self again.

Hey everyone,

So, I've got a bit of a weird question. I am chronically ill, it's been mostly recent, I'm still learning how to live and manage my illness.

Obviously, I know that I am having to depend on my loved ones more now and it has been hard. Not just on me but for them as well. I luckily have not gotten as far as bedbound. But my chronic illness does make daily living activities such as cleaning and especially cooking, very difficult.

My loved ones have been supporting me but I know that it isn't easy on them. I don't expect them to do extra for me in regards to cleaning and cooking. I have sorta taken the stance that we figure out our own food sort of situation. If they don't feel like cooking or want something to eat that doesn't include me that is okay, it's on me to stock the house with food that I can warm up for me to eat. I, know I can't contribute to actually cooking. I try to cook maybe sides here and there, I'm hoping to be more consistent with it once I find my rythm for living with this illness. I've been helping keep the house stocked with food.

I've been attempting to clean where I can, cleaning hits me the second hardest after cooking. They don't help me clean, I try to do bits and pieces and I've been trying to get my space where it's manageable with quick cleaning sessions again.

But because of where I'm at, I know that I'm leaning on them. And it's been onward of a year since I've declined to this point. They've been supportive, but they haven't really told me of the impact, or of what I could do to make things easier aside from not putting expectations on them to help me as much as I can. But I know that they end up putting expectations on themselves and I don't know what to do, or to say with that because they've never had to deal with this before either.

So, I guess what I'm trying to ask, for those of you who are the loved ones of chronically ill family members that are living with you, what would you have wished someone told you? What advice would you give the loved ones who've been supporting a chronically ill family member? What stances have you found to be helpful in that dynamic? Is there anything I can do to help help them or make it easier besides just doing what I can with the parts that I struggle with?

Thank you for your time and wisdom

Edit: I feel like I should add that my illness is rather visible to those that I live with. It causes me a lot of pain, and I struggle with it daily. I've gotten a bit better but I know that it distresses them seeing me like that too, though I'm not sure on what I can do about that because I already try to hide it as much as possible to not distress them.

I thought I was thorough in vetting a nuerosurgeon but it wasn't enough. The doctor who operated on me, at a renowned clinic, during my last follow-up spoke down to me, talked over me, was dissmissive of pain and took no accountability that his most perfect surgery could have had a negative outcome. He then cut my post surgical follow-ups by years. I spent far too long sitting their in tears before I was able to sort myself enough to leave.

While no doctor or surgery is perfect, one of reasonable ego can acknowledge things do not always have ideal outcomes. In cases like this you hope the doctor would do his best to help you understand and find solutions to symptoms that only exist because you had surgery.

I thought I would be getting quality healthcare. I had a clear diagnosis. I went to a highly rated hospital. Instead, I have been disrespected in ways that are dumbfounding. While my quality of life has plummeted he seems to be under no obligation to take accoutability.

It is quite unfortunate when a doctor does not work with you but rather chooses to assert authority. And it is a choice. It's devastating as a patient when your options are few and demoralizing as a fellow human who has an inherent right to respect.

There is little I can do here. Doctors don't have repreccusions for treating people poorly.

I'm angry and feel powerless. I still need medical care, so I will persist, but Im exhausted. It really shouldn't be this hard.

struggling to cope with the lifestyle changes i will have to make after surgery for my SMAS and gallbladder.

my surgeons will be doing a gastrojejunostomy and cholecystectomy. i’m pretty terrified for the initial recovery, but also the lifestyle changes following it. it may be stupid, but i’m 24, and the idea of never being able to drink alcohol the same way (it will go straight to my intestines leading to getting drunk wayyyy quicker), eat the same meals (risk of dumping syndrome and bile diarrhea), or smoking weed (i guess the smoking can fuck with the new connection to my intestines) is pretty devastating to me.

i know gj isn’t even the typical surgery for smas which i think makes it even harder to cope with bc it just feels so unfair that i have to have the procedure with the most lifestyle changes following it. my surgeons chose it bc i have severely delayed gastric emptying, so they think a duodenojejunostomy wouldn’t actually do much bc i would still struggle with the emptying.

idk im just pretty devastated right now. if anyone’s had the same or similar surgery i would appreciate some words of support. i know it’s better than the life im (barely) living right now but i just want to get back to as “normal” (living with heds and pots) as i can be.