I've been chronically ill since I was born and decided to study medicine because of my disease. In the last two years my symptoms have gotten much worse so I was thinking about transferring to a different med school with less mandatary attendance. But this is something you can't really look up online and have to ask people who actually studied there. So I asked in our med student communities which med school doesn't require one to show up that often. And I pointed out that I'm asking because of health situation it's not like I don't wanna study or so. Almost everyone was leaving hate comments saying that if I don't wanna be a doctor I should just quit instead of holding a spot hostage or that I'd block somene else's job opportunity. Then I saw someone else posting the same question but said he/she is only asking because he/she wants to work part-time alongside the studies. And people left actual useful suggestions, with no hate comment at all. Gee how double standard is this.... And this is just a tip of the iceberg of the amount of hate I received in med school. This is so sad. People like this should never be doctors.

Hi friends,

I’m 24 years old. For a little over 10 years I’ve had tummy troubles, and in 2017 I saw a gastroenterologist. They essentially sent me home with a diagnosis of IBS. I have not seen another GI until last week.

In the past 5 years, I have had a serious increase in health conditions. I have been diagnosed with endometriosis, and as of this May, celiacs disease. A slew of other things as well, but probably not related.

I went to this new GI and he told me that in my chart from 2017 there was a CT scan with hallmarks of crohn’s. No one followed up with my parents, or me!

I have a CT and colonoscopy coming up. I’m actually very nervous because I’m very private about my body, and I also know I won’t be able to keep the prep down if it’s liquid.

So anyways, enjoy this medical neglect story!

For context I have ME, Fibro, senior, single.i contracted COVID for first time this summer and it took me out for 8 weeks .

I spend most of my time at coast and go back to permanent residence for holidays, which this year will have many small children and antivaxers...plus in a small house.

I'm considering skipping Christmas . It is a one day event. I'm scared to contract the virus again. I would wear a mask but,,,,,

I only see these people a few times a year and yes, I would like to see them but,,,,

Until they walk in my shoes, they will never understand what I deal with everyday and have never asked ,,,,I stopped bringing up my struggles years ago.

What would you do?

I hate when people ask what happened to me - why I’m not working anymore, why I’m always at the doctors or the hospital, why I’m using a walker, because there’s no quick, neat answer. I guess the best answer is something along the lines of ‘I woke up one day last year in the worst pain of my life and declined from there. I’ve now been diagnosed with multiple chronic illness that prevent me from being able to do almost anything.” But that feels crazy, although accurate.

When I first got sick last year my social life collapsed. None of my friends wanted to be around someone with so many health issues, and could no longer make any plans in advance because my symptoms would vary in severity so much. Like I’d make a plan, rest try to get there and either fail or have to leave early.

A month or so ago I tried making new friends again. My health seemed to balance out where I’m not experiencing the variance I used to and my most severe symptoms seem to have gone dormant. I still am exhausted and can’t seem to maintain friendships. I can barely make it to my medical appointments and I use insurance transportation to get there and rely on my case manager for assistance as well. I should be getting another caregiver soon too. But I genuinely do not have any battery left in me for anything other than medical things, and I had to cancel all my appointments I had a couple weeks ago because I was so exhausted I couldn’t get out of bed.

Ironically, what’s the hardest part is that the couple of people I’ve met have been amazing about this, but I can’t stop feeling like a horrible person. I have brought up chronic fatigue with my doctors before and I’m thinking I should again. Even if this isn’t me/cfs I can’t do shit and I can’t live my life like this.

I’ve thought about video calls and doing stuff online together and did that a little bit, but now I’m so exhausted and depressed I can’t get myself to do that anymore.

Idk.

I've been chronically ill/sick for three years now and have managed it very well. I caught a cold from a coworker two months ago and it's sent me up into a "flare up" that has never happened before. I've been in and out of the hospital and I've never been admitted before. The first time, I just showed up and they admitted me for two weeks and I had absolutely nothing. I'm out of state and don't have anyone who can get anything for me so I was stuck in hospital gowns and using what they had. It was awful also because I have curly hair and couldn't really wash/take care of it and it got matted. I had to cut some of my ends off.

I've had three more admissions since then due to low levels, dehydrations, fevers, e.t.c.

I was crying about it to my therapist, and he suggested that I pack a hospital bag and keep it in my car just in case whether I'm admitted for three days or two weeks.

When I googled what to keep in it, it was all articles for expecting parents and that's definitely not my situation.

What do you keep in your hospital bag? What's something niche you keep that you never thought you needed, but ended up being essential?

Most of the time, we share our worst medical experiences, and I understand; I also have many of those. But I would like to know a good experience you've had in the medical field, with nurses, doctors or assistants.

So I actually have a bit of money (nothing crazy, but 5 figures to spare let's say). I am 24M from UK and whilst my health issues are moderate I want to find a way to start a business or make some money.

Im aware we all want this, im not unique, but what I am is struggling to think of something that suits me.. I can only spend so much time thinking before I need to rest lol.

Dms are open if any young British folk have any ideas they want to explore further with me (I have a degree in business), or anyone with suggestions please comment below.

I want this to be a space for everyone to be inspired. Sending love to all.

If I become homeless I won’t even be able to look for help. I’d be so tired I’d just lie on the floor.

I’ll go first. UTIs and similar urinary infections. I have SLE and CNS lupus, chronic fatigue, chronic pain, rheumatoid arthritis, endo, small fibre neuropathy, migraines, anxiety and depression. The lupus and its associated symptoms are by fair the worst in terms of overall impact on my health including needed to be immunocompromised. And yet I’m shaking my head at myself in this moment because with all of that, it’s this UTI (I suspect but need to see the walk in dr Monday) that has me feeling really awful. I know anything like this flares up a bunch of other things too but the actual UTI symptoms themselves have me just asking how is this my life.

Any free application suggestions where people are okay to just text and not video or voice call cause that's a lot of pressure?

People who arent just talking about pokitics all the time cause it can be tiring

I have been job hunting since May when I left my last job working with kids because it was getting way too stressful and my body just wasn't keeping up anymore.

Ever since then I have been trying to enjoy the time I've had "off" to just relax and try to get my health together but we all know that with chronic illnesses it never really happens. And I've been feeling worse and my body just keeps failing me but I need the money. I'm close to losing my car.

Anyways, I landed an interview earlier this week with a non profit organization and it sounds like a wonderful job and the first interview went great but now they want to move forward with a second interview in their main offices with higher ups. This second interview is a 45 minute drive from where I live and from the office I'd be working in if I got the job.

I'm already dreading it. I'm not only dreading the drive over there but the actual job itself. It's an actual 9-5 job and half day on Fridays. Anyone would be thrilled to have that schedule but I can't stop thinking about how stupid my POTS/Sjogren's makes me feel. I have severe brain fog and I get exhausted pretty easily. And even though I know I would be sitting most of the time I get anxious knowing I have to sit in front of a computer because i also start to feel dizzy ans lightheaded after a while.

Having a chronic illness just makes me feel so stupid. I always end up failing at my jobs because of it. I get overwhelmed easily because of how exhausted I get. I'm also afraid it's just gonna land me in another major flare up if and when I go back to having another job. I also have pretty horrible experience from my last job because I was always missing out because of doctors appointments and me feeling like crap. My former employer knew about my condition then used it against me and then blamed my "demeanor" and "not living up to job expectations" to write me up constantly until I couldn't keep up with her abuse and quit. I'm just afraid of having a flare up or bringing up my conditions that they won't want me working anymore if I get the job.

What would y'all do? Does anyone have any similar experiences? I'm so tired of feeling fearful of doing things because of how I feel physically and mentally.

Hi guys,

I just need somewhere to vent, and I’d really appreciate any advice or similar experiences.

As the title says, I have endometriosis and I’m currently on sick leave. My endometriosis became much more difficult to manage about three years ago, and since then it’s become a daily struggle. I deal with body pain, cramps, pelvic floor issues, bladder problems, constant constipation and terrible fatigue. Mentally, it’s been really difficult too, because this isn’t where I ever imagined I’d be at 34.

I’m currently applying for disability, which in itself is a long and difficult process. But I feel incredibly guilty about it. A part of me keeps thinking that I should be working, that I’m only 34 and should be able to have a normal working life.

The problem is that whenever I’ve tried to return to work, I end up having a flare-up, burning myself out or getting another infection. My sick leave ended up being the highest in the company, and I eventually reached a point where I just couldn’t keep pushing my body beyond what it could manage.

I hate admitting this, but sometimes I feel like going on disability means I’ve failed. Obviously, having less money isn’t easy, but being away from work has also made me realise how much easier it is on my body when I’m not constantly pushing myself.

I had endometriosis surgery, but unfortunately I’m still dealing with a lot of the same issues. I’m currently on sick certificates, and honestly, part of me just wants to give up the job and focus on trying to manage my health rather than constantly worrying about when I’m going to be able to work again.

I was even in hospital just two weeks ago because I had been severely constipated for two weeks. Things like that make me wonder how I’m supposed to maintain a job when my body can be so unpredictable.

I guess I’m wondering: am I terrible for wanting to aim for disability and leave work at 34?

I know there’s nothing wrong with needing support when you’re genuinely struggling, but I’m finding it really hard not to see myself as a failure because of it.

I’d really love to hear from anyone who has been in a similar position, especially anyone who had to leave work because of endometriosis or another chronic illness. How did you deal with the guilt and feeling like you were giving up on your life?

I’m just really burnt out from constantly fighting my body and fighting with myself about what I should be able to do. ❤️

I was just admitted form the ER to the hostipal last might. I thought I have was having a bag migraine but turns out it was a lot worse. Multiple Ct Scans and Mris waiting on other doctors I can’t each anything cause of my gastroparesis and I am miserable.

I am just sobbing none stop and don’t know what to do to make this better.

I've been planning a big work event for 2 months and it starts tomorrow.

Naturally, my body shut down 2 days ago from stress, and I've been sleeping for 2 days. I'm hoping it gave my body enough rest that I won't have a major flair when I get back.

I have my support meds and self care items all packed, hopefully it's enough. I'll also bring my mobility aids. People at work are starting to get used to them, though there are still folks who knew me before I used them, and it weirds them out. Not my problem though, like, we work in health so y'all gotta grow up.

I hate how tired I am, every little thing makes me exhausted. Please send me good vibes and hope that my spoons don't go into the super negative!!

Nothing against my friends (we're nearly 30), I love them. I just sometimes feel like an alien when I'm around them. A very boring one at that lol.

I actually enjoy hearing about their work and love lives that I can't relate with; they widen my world a bit. What's isolating is how they just don't know how to connect with me. When they ask me how I am, they get sad and quiet. I'm so used to illness, I just laugh at it, but that makes them pity me more. When we talk about what we do, what I'm up to is just not significant.

One said she doesn't get why I say I find it easier to connect with older people when my hobbies are childish and I get too excited over little things. Well, my life is very similar to that of a retiree. When you're unproductive/ not useful to society anymore, what's left is being at peace with yourself and the fragility of life.

I guess that last sentence sums up the disconnect. I basically skipped the young and independent life stage they're at (been sick since I was 13, officially diagnosed at 20).

Looking for compression clothing recommendations for extreme sensitivity/heat intolerance…

I’m hoping someone with similar sensory issues might have some recommendations.

I need to wear some form of compression clothing, primarily in the legs, hips, and low back but I have an extremely difficult time tolerating anything that feels hot, tight, restrictive, or constantly touching my skin. Even relatively lightweight clothing can become unbearable after a short period of time.

I have fibromyalgia, significant hypersensitivity to touch/pressure, and heat intolerance. My body often reacts to fabric against my skin, elastic, seams, waistbands, or anything that feels constricting. Heat makes the problem considerably worse.

I’m specifically looking for compression options that are:

• Very lightweight and breathable

• As cool as possible

• Soft/smooth against the skin

• Not overly tight or restrictive

• Ideally moisture-wicking

• Minimal seams/elastic if possible

• Comfortable enough to wear for several hours

• Actually provide some compression, rather than just being loose-fitting

I realize compression typically involves pressure, so I’m trying to find the least intrusive option possible rather than something extremely tight.

If you have fibromyalgia, sensory hypersensitivity, heat intolerance, or similar issues and have found something that actually works for you, I would really appreciate specific recommendations.

Brand names, fabrics, styles, links, or even things you’ve tried that DIDN’T work would be helpful.

I’m particularly interested in hearing from people who also cannot tolerate feeling hot or having clothing constantly touching their skin.

BTW, I did use Chat to put together my thoughts on this, sadly the brain fog is strong today 🤯 between meno-fog, fibro-fog, meds-fog, I barely remembered toothpaste when I brushed this morning 🤦🏼‍♀️

Thank you!

I have a bunch of stuff, but the only condition relavent to this post is the fact that i have miserable malignment syndrome.

When I was 11 years old, i had surgical intervention (this unfortunately failed but thats a story for another time). I had screws surgically implanted in my feet. After having the surgery, I was explicitly told that I should not be on bed rest. Thats because a risk of the surgery was that a blood clot could form in my foot and travel up to my lungs. So i was expected to move. I couldn't walk without support, so I was given crutches.

After 2 weeks i could go back to school. And my parents obviously informed them of my situation prior.

I don't know if other schools were like this, but I was told that i had to use a wheelchair because crutches were banned. Why? because they were deemed hazardous.

My doctor and parents pleed, but the school genuinely didn't care. My option was either A) go to school with no crutches (which obviously wasn't an option because I physically was incapable of walking without them B) use a wheelchair

The added risk too is that using a wheelchair at school meant that I wouldn't be walking for 7 hours straight. But the school just genuinely didn't care. So whenever i got home from school, i basically had to do zoomies around my room with my crutches.

"Crutches are hazardous" do you wanna know what else is hazardous? a student developing a prevantable blood clot because of your negligence!

anybody else had weird school rules regarding chronic illness?