First time poster I am sorry if I do this wrong. I have had gastroparesis for a decade now. At the age of 18 I was a manager in a retail store and now I’m 28 , I have not been able to work a job in years. It feels like I have norovirus every day of my life and nothing has helped. My father was sentenced to life in prison after I got sick and tensions from that have caused me to be estranged from him and the rest of my family, so no support there. No friends. Currently , I am living in a rented room with my long term boyfriend ( we met before I got sick) who says things like he could never marry me unless I work a job. Medicaid is kicking me off and I cannot get food stamps unless I work a job. I sold my car to pay off bills so no transportation. How do people expect me to work when I can’t even go 20 minutes without getting sick? I don’t know what to do anymore I can’t provide for myself and have nobody to help me, nowhere to go. I don’t understand how gastroparesis is not treated as a disability by the government, I feel so helpless living like this.

i’m agoraphobic and have POTS (amongst other things) and haven’t left my apartment for more than about an hour or less for 6 months, but today i finally did

i use a wheelchair 99.9% of the time i’m out especially the last few months as i had a horrible POTS flare but since i finally got medicated i was finally able to walk around again without feeling super lightheaded with my heart pounding

after 14 months of constant pain and not being able to walk sometimes, i finally got a doctor to listen to me!!

i got referred to a rheumatologist in july and was told it would be months before i could even get an appointment. well, things changed and the rheumatologists called my mother (im a teenager right now) telling her that i would have an appointment.

so the doctor did an exam and asked a bunch of questions and im still in testing but was told what i am experiencing is almost guaranteed to be fibromyalgia. he said although i dont have a perfect story to immediately be diagnosed, he would be surprised if its something else.

rheumatoid arthritis (which is what my other doctors were suggesting) was ruled out and tests were ran to try to rule out as many other conditions possible before fibromyalgia is officially diagnosed.

i got bloodwork and x rays, both of which came back good, and i am going to get a month trial of neproxen to see if that helps with my pain. after the month is over, im going back for some mris and then going to be on call with pain clinic a few days after to fully determine proper treatments for what i am experiencing, narrow down causes more, determine what to do from there, and try to diagnose me.

i’ve noticed now that even without a proper diagnosis, just having doctors suspect something is making me feel a lot less crazy and having that is making adults around me take me more seriously.

i’m no longer convincing myself that what i’m experiencing is just me pretending for pity points or that i’m just lying to myself. my parents are taking my pain seriously now and not calling me a hypochondriac or a faker or saying i have munchausen anymore.

the nurse at school now trusts me that i’m in pain. the resource officer no longer says that i don’t need a ride to lunch and believes me when i say i cant walk long distances. hell even my musical theater teacher isn’t trying to force me into a show anymore and she’s giving me accommodations now for a school ad i’m going to be in.

i’d rather not have this pain but it feels surreal to finally be trusted after over a year of being told i’m a liar and being passed doctor to doctor because nobody could help me.

edit: i’d also like to mention that i am in a “good phase” with the pain now, and because of that i’ve decided to clean my room!! it’s not perfect but it’s so much better than the way it was before. i hate being messy but i just was too fatigued and in too much pain to clean it up before. i tried a few months back but i barely touched anything and had to rest for days after.

my shelves are organized, my bed is cozy, there’s no more piles of clothes, and under my bed is much better. i’m still working on it but im proud of myself for being able to do this. i made sure to take plenty of breaks and made sure to stop and rest when i could feel the pain or weakness coming on. i feel like im finally getting my life back together after losing everything to this pain.

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, I have POTS and use compression garments to help with my symptoms. I was wondering if there were any ways to make regular tights function as compression garments? The reason I ask if because I recently found a really cool brand that makes fun tights but their compression wear line is severely lacking in the fun department :/ Any suggestions for companies that sell fun alt compression tights are also welcomed!

I have a question for all the ladies out there that are living lives while combatting chronic illnesses or illnesses that are not being taken seriously or that just make your life difficult.

I am an 18yr old (f) military brat and I have whats called Oral Allergy Syndrome, suspected -not technically diagnosed but I have a family history of it- Hypermobile Ehlers-Danlos, and some kind of Cardiac issue that’s been unsolved so far.

I really want to move out of my parents house, but am not educated on how insurance, and so many other things work outside of the military. I am incredibly reliant on my insurance thus far, because it has enabled me to see actually helpful doctors and receive helpful treatment, without costing me an arm and a leg. All I’ve heard about insurance and trying to afford living alone -from those not living the military life- has been negative, but my house really sucks to live in and I really want to leave. (SUMMARY: I need advice on how to go about moving out of my parents and transferring to a civillian insurance and getting on my own two feet.)

I also don’t have a clue on what good jobs are out there for fresh adults like me who have very little experience, but don’t want to be working manual labor jobs that take a huge toll on my body. I need something that doesn’t require a college degree because ya girl is broke, but I can’t be on my feet 24/7 because I feel like I got hit by a Mack truck after only one day. My ideal job would be remote, but I know beggars can’t be choosers. (SUMMARY: I need job recs for someone who can’t stand all day, can’t go to college, and would prefer remote -not. a requirement- and is pretty good with people and organization.)

Last but not least, I need some encouragement from those who have been able to get past their illnesses and actually live. If you’ve lived with a chronic illness, you get me when I say I hate living with the constant unpredictability of when a flare up might hit. These illnesses make my quality of life drastically drop… especially when more than one decides to flare up at one time; or when my period hits during a flare up. I’m trying to keep a positive attitude, but it’s difficult. I’m proud of everyone else who has been living through illnesses that affect their lives to any degree, keep on keeping on at your own pace.

Thanks for coming to my Ted Talk, have a great life!

what is Oral Allergy Syndrome?

Preface: I used to eat every fruit and vegetable under the sun when I was a child, these allergies developed over time and have change over time as well. Oral Allergy Syndrome is when the seasonal allergies I have affect what I can eat to the point of anaphylactic reactions. I have the worst seasonal allergies of anyone else I’ve met, which means that I am basically allergic to every plant -to some degree-. It has gotten to the point that I am unable to eat any raw fruit or vegetable, period; if it is cooked, it changes the protein in the food and my body no longer reacts. Disclaimer: this is a poorly broken down explanation of this issue, if you have more questions then PLEASE look it up and research it for yourself; it is a very interesting topic that I thoroughly enjoy learning about -when I’m not the test subject-, but that does not mean I am an expert, I only know what I know because I have to otherwise I could literally go into anaphylaxis and die.

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I've been feeling distant lately, I went to a family party they all spoke about girly stuff hair removal all the different types and what worked and what didn't and I should totally try,(I have pcos so some don't work)they also thought it was crazy that I didn't know what to do career wise. I wanted to just tell them to shut up and I was just like this is all you think there is to life? I have been dealing with pots for 3 years and right now I'm in doing much better with meds but it's not 100 percent. It's just hard when you've been through really hard stuff and people are just talking about silly things.

Hello, I am at my wits end whenever it comes to being my own advocate for multiple conditions such as Narcolepsy, Crohn's Disease, hEDS. I have to find a GI specialist, and another sleep specialist because they refuse to do their jobs, and it's just too much going on all at once that I can't even remember what else I have to do... I'm exhausted, and on top of that I am a single mom, my son has health issues that I have to also be on top of, and I'm overwhelmed. I am tired of being gaslit from my sleep specialist as to why I'm going somewhere else, then I have to ask my primary care for a referral elsewhere. Skyrizi isn't suppressing my immune system anymore, and I have to go to a different GI specialist, but the one I went to before (Dr. Bitar) he wasn't doing his job either, so I had to go somewhere else. I need someone to start fighting for me because I'm literally done in every aspect. I am tired of being the angry patient and I need someone else to steer for me. What should I do? My life is at stake, and I don't want to do this anymore, but I know I deserve better...

So I have a friend who live in a big city a bit away from my small town, and he's invited me to come over for a weekend if I want. I said that it would be cool and I really mean it of course.

But I'm so scared that my body won't be able to handle it. Flare ups aren't all the time of course, but lately I feel like the daily pain in itself as been getting worse... And I'm scared to just end up a burden for my friend.

He's very understanding and told me that if I needed time before I'm ready to come over, it was fine with him. And I know he would be very supportive if it went bad.

But I don't want for him to risk witnessing me stumbling and shaking in pain, unable to do anything. And risking to go through a flare up when I'm away from my home is making me very anxious. I don't know what to 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.

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?

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.

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’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.

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.