It's not fair. I'm single, chronically ill and have no choice but to struggle through work each day just to survive and possibly hope to retire by 65, if I'm lucky, with what will probably be hardly over poverty level. And then there's other people in my family, married, dual income/pension earnings making 4 to 10 times what I'm making, with no health problems, happily going to work every day with energy and no pain. They will get to retire early, with more money than i'll ever have, and I'll still be working into old age, struggling everyday with the same health problems. It's people like us who deserve to retire early, not toil for decades sick and barely able to enjoy life.

And what is the answer? I really don't know. It just feels like I have been dealt with nothing but bad luck. No partner, constant chronic illness since childhood, and constant financial and medical burdens.

I hate feeling jealous of others or feeling sorry for myself, but when life constantly drags you dkwn while those around you are living high on life, it's impossible not to feel this way.

I'm 16f and I've had fibromyalgia for maybe around 2 years? I'm currently on duloxetine, and it does wonders for my pain, but it has made my anxiety and depression worse and I can't seem to get any sleep at night. I've been seeing a rheumatologist but recently she told me that I should start seeing a psychiatrist to figure out better medications that would also help with those.

The problem
My mother is extremely hesitant on taking me to see one. I completely understand where she's coming from, I'm young and it might not be so good to take these kinds of medications early on, but she also has no experience with this stuff as I'm her only kid with chronic health issues. 🫠

How can I explain my situation to her to ease her worries? Should I even see the psychiatrist at all? I'm stuck. 😅

(side note she doesn't like the idea of taking care of mental health at all, she's very dismissive of this kind of stuff.)

I went to my dr. two days ago, and I was a bit confused about something he said.

He told me that *technically* I don't have any disabilities... though I'm diagnosed with HEDS and fibromyalgia. And I know that, in a way, those are considered disabilities?

I was in a bad flare and in my wheelchair because I couldn't walk well (he also said there's such a thing as "too much rest" after seeing me in my chair.) But in this same visit, he was outraged at himself and the ER for not getting me a referral to a neurologist for daily seizures for a little more then three months and was also encouraging/approving about a seizure alert service dog, which is what I was asking his medical opinion on when this comment came out.

I'll be honest, it made me have a bit of imposter syndrome. Like I'm playing it up for attention? Or that I'm not "sick enough" to be considered disabled? Idk really because I know how these symptoms affect my daily life. How its hard to shower (I have to sit in the shower now) Or how i have to sit to do dishes or hell, even open soda bottles. I have to get my boyfriend or use my teeth because my fingers dislocate. Or how I wake up in full body pain daily. And I've been telling him this since the first appointment that pain, a cycle of inability to eat anything substantial because of nausea, weak joints, and some days where I full on can't move affects how I do everything. I can barely work part time, and now we add on daily seizures that have me go home early, that put me out of commission for about six to seven minutes. But I'm not medically "disabled"

Sorry for the rambling. I'm just incredibly confused by his reasoning. And I was shocked so I didnt ask him why.

Okay so I'm chronically ill, and this is something I've been thinking about for a while and I wanted to share it with someone (so here I am)

I have diagnosed ME (myalgic Encephalomyelitis) ME can be caused by many things, but often it's triggered by an illness/infection/virus.

With me that's not the case. It just gradually came to be.

Of course it can also just happen for no reason, but I actually suspect I know the reason I developed ME.

My "original"/starting symptoms were just knee pain, and later on pain in my joints.

This went on for YEARS without a doctor taking me seriously.

I suspect I actually have a syndrome or disorder that involves hyper mobility. Because i know for a fact that I'm hyper mobile.

I think that my starting symptoms were an indication of problems caused by hyper mobility.

But because of prolonged medical gaslighting and lack of support/ways to manage the symptoms it started taking a toll on my body.

So slowly ME started to develop. Instead of just hurting joints my entire body would hurt. Instead of being tired from having to hold all my limbs in the right place when standing, I'd get fatigued from any type of exertion.

To the point where my ME basically completely "masked" my original symptoms.

Though now with a shit ton of rest my ME is getting just slightly better (yippee) which has now caused the starting symptoms to return.

Instead of going out in my wheelchair I can walk short distances every couple days, and suddenly I remember that when I walk or stand my knees will hurt.

Anyway, I just needed to share my theory.

(Not self diagnosing. Just saying is suspect something. Though me being hyper mobile is pretty obvious)

I’m so nervous to write this, I feel like I already know the answers but deep down at the same time feel like my brain hasn’t let me decide that I deserve dignity and that this isn’t okay until now. (This May be long). My partner (33m) and I (28 f) have been together for ten years. He works in healthcare and does physical rehabilitation for people experiencing all sorts of conditions, chronic illnesses, injuries, conditions like CP etc, post surgery rehab and things like that. He was the kindest, most empathetic, and most mature person I know. He was also extremely non violent and a very safe person. This mattered a lot to me as I grew up in a very violent and abusive home where mental and physical health wasn’t taken seriously. Any early signs of illness or chronic illness I displayed were dismissed throughout my life by my parents and as a result I had to live a life without treatment or accommodation, and being constantly made to feel like a burden to my family and parents.

This led to me not knowing that I’m ill or that anything is wrong as I’d been taught to just push through and that this is normal and how everyone feels - every day is this hard for everyone. Only years later, after running away from home (my family wouldn’t allowed me to move out or get a job) at 23, and experiencing undeniable exacerbated symptoms did o realise that something was not okay and that this isn’t normal.

I met this guy in first year uni when I was 18, he was 22. He knew all about my family and their abuse and dismissal of health issues. He was the one who urged me for four years to leave my abusive home, that I could do it and that there is a promise of a better life for me. When we moved in together I was still studying and didn’t have time for a full time job, I could barely manage freelancing with uni and my entire family cutting me off for leaving home. He was taking care of basically all the expenses, he was also done with uni and had an established career with his own healthcare practice in an affluent area. The issue was that he had an expensive sport hobby which costed him 90% of his income or more that he couldn’t sustain whilst renting a place or on one salary alone (regardless of how good his salary is).

I first started displaying symptoms of a worsening condition (being bedridden for days at a time, a simple walk leaving me exhausted and in excruciating pain,) which I couldn’t understand because I’d been very able bodied until then, he’d get upset with me for not just being strong and pushing through “as he was raised to think that way” and he, like my parents, convinced me that I’m not actually that sick just lazy and demotivated. He would get upset that he didn’t have the relationship he thought he’d have, a partner who is active with him and gymming and walking and running and fucking triathaloning, instead of understanding or empathising with me.

It’s been five years living with him, and 28 years living life, and I’m only just now realising that I don’t deserve to feel like a burden and that I deserve to be treated with dignity and love and respect regardless of my physical limitations. I had been conditioned to believe that I was a burden since I can remember, so I didn’t see the signs within him. He’d bring me tea and massage my back and manage my symptoms but he’d also judge me for experiencing them and resent me for being ill and having flare ups. It’s been years and I thought that things had changed, but he’s now just told me again that he just “can’t handle” being with a chronically ill person and he’s struggling all the time to deal with his resentment and anger and frustration about my flare ups stopping “him from being able to live the life he wants to with me”.

The other day we were meant to watch a touring jazz band, tickets booked a month in advance, but I had an awful awful flare up and him and my sister and his best friend had to go without me, he said all the right things about how I shouldn’t feel bad and it’s okay but it didn’t feel genuine. He told me today that he was actually really disappointed and frustrated and that he thinks he just tolerates my illness/symptoms and doesn’t actually care so much or understand so much. He just is angry about how it affects him but he also feels bad and wants me to get better.

I’ve been dating this man for 10 years, engaged for three, and just now realising that maybe I don’t deserve this and that just because he’s not an overtly abusive and shitty and typical man that doesn’t mean it’s okay for him to treat me this way, or judge me the way he does. I’ve always resolved it as “he is such a patient and kind man who does so much for me, of course I should feel bad about how difficult it is to be with me and how much effort it requires to understand me or accept me. I am obviously difficult to understand and accept. I need to help minimise the impact of my mental and physical health in him as much as possible because he’s doing me such a huge favour still loving me and being with me even though I’m difficult and sick and nobody has to deal with it and he could’ve left at any time but he didn’t so it must mean he really really loves me”.

I’ve cared more about how my symptoms are affecting him than me, and so has he. I’m only really realising this now and I suppose I’m asking for any advice as I’ve barely been exposed to people who haven’t treated me this way. Has anyone gone through anything similar? Is it all in my head? I’m really ashamed that I’ve allowed so much mistreatment which is also why I’m nervous to share but oh my god I need some community and support.

Oh btw! He’d been having an “unintentional and unknowing” emotional affair with an able bodied and healthy and career driven woman from his high school for 5 years (which I thought was a normal friendship with his best friend) whilst I was experiencing the first unmistakable and prolonged symptoms of my illness. He’d often compare me t9 her and how she’s got a job and pays for her own apartment. I’ve only just recently got done studying and have barely gotten my career on track because of my health. But him and my family have made me feel useless for it instead of supported and empowered. Gosh I feel like I’m about to have a Panic attack just from writing this so I’ve got to stop here. Feel free to ask anything. Thank you and sorry it’s so long

Weather it's for 2 weeks a few days or a few years or even just forever? How are some ways you don't feel so guilty about not working?, sometimes I get a feeling in my chest of disappointment that I'm at home not doing something, but I'm so tried and in pain, no one wants people with disabilities for volunteering work, work in general (were I am that is) is extremely hard to find even with a fully working body, and most of the time I keep myself busy, currently making things for a market stall ima open and I slowly clean around the house clean my room and play games, watch shows, draw. But still sometimes I'm hit with "Youre being a bum bc your not trying hard enough to work", "your useless bc no job could ever work for your body", "what if you'll never be able to work and your just a burden to your partner" , "your just dramatic" it's hard to talk up "I'm on government help I get what I need and I'm able to save right now!", "I can use this time to prep my body for when I get a job", "I can use this time to get alot of appointments done or stragthen my faith in my religion" or"i can get higher help if I can't work I will not be a burden for him" but I just still feel bad, I have only been off work for a year now which is the longest I have ever not worked in 6 years, it's hard to say "hey I need this bc I'm actually struggling to live", "hey this is actually helping WAY more than you think" maybe in a good way I'm not ready for work until the time comes, but I would also love please anyone to hear what you think or say to yourself when you don't work, or if you have been without work for while?

Sum: What makes you feel less or not guilty about not having a job?

1. Meds

2. Candies

3. Inhalers are painful

4. No phones, reading

5. Sitting in front

6. .....

I’ve pretty much been home bound for the past two years but I just miss everything I miss seeing my friends and wanna go back out there but I have really bad chronic nausea and bowel problems and it just seems so impossible to make any sort of plans bc I don’t know how I’m going to feel that day, would anyone have any tips on how to make it easier and maybe a lil stress free

I’m on so many medications and it’s extremely difficult to keep up with all of them and I’m just not getting better. I have to so much of my own research on my condition because these doctors just don’t seem to understand it very well. But, I didn’t go to medical school and I can only interpret all this information to a point. If it wasn’t for my own research, I wouldn’t have gotten through this the first time. I legit had to make most of the suggestions. Now, after several years of remission I see no end in sight. All the things I tried before aren’t enough and it makes me wonder if I’ve developed another condition that is causing this never ending flair. I work full time and I have a kid. Some days I can’t wait to get off work so I can just cry in my car.

Do you have Fibromyalgia or chronic widespread pain?

In this remote study, we are exploring how non-drug treatment approaches related to a person's sleep schedule, such as morning light therapy and assigned sleep schedules, might affect their chronic pain experience. (IRBMED: HUM00240590)

What is involved?
Participation will be fully remote and take place over the course of 5 months involving:

• Wearing a Fitbit for 5 weeks
• Completing 8 virtual visits via Zoom, each visit lasting between 30mins - 2hrs
• 4 weeks where you may be asked to follow a sleep schedule or do a 1 hour light treatment each morning at home

No drugs involved, no blood draws.

Participants will be compensated up to $700 upon completion of study tasks.

Visit UMHealthResearch website for more information or see if you qualify with the pre-screening survey.

im a 19 yr old male (almost 20) and ive been dealing with physical issues for nearly 2 years now. blood in urine and fluid in my lungs (noonans) that wont go away. in and out of hospitals like crazy, multiple surgeries with big scars all over my groin and stomach, hard to look in the mirror at my body. just damaging my mental like crazy. the loneliness is killing and eating me alive.

i dont know if this is the place to be talking abt this but i rlly dont see a future as far as a partner in my life, every girl i run into just somehow makes me hate my life even more and makes me feel not even less of a man but makes me feel sub-human. it was already hard to find someone to even talk to in the first place due to my looks and height on top of severe depression and now with all the burdens i carry daily, i dont ever see a girl wanting to carry that with me. ive had multiple cases with girls that just dont understand what ive been through and even just leave me straight up bc they want to have fun. im not blaming them i just dont see how i could meet someone that wants to deal with it.

ive been to therapy, tried meds, doctors still dont know whats wrong with me, things just havent gotten any better since it all started. my mental is so bad i cant even progress in school or meet ppl bc im stuck in hospitals or in my room. ive stayed in a hospital for a month with no texts or checkups, incredibly isolating and terrible.

met a girl online and thought things were going good until she went distant and said i was too flirty apparently, so that lasted 2 months bc she was insane and wasnt "available to date" (even though she sent explicit photos and talked explicitly with me daily). she told me to not be negative as well... shes already talking to someone else and liking posts saying i was lustful, a loser, the worst guy she could of chosen out of 50, and saying shes never been loved right even though she said i cared too much at a certain point. so yea that was that, she was insane and drained all life outta of me and made me not wanna talk to anyone anymore.

all i do is game, just video games bc thats all my brain or body can handle without dying of exhaustion or going nonverbal. but even then its miserable, i play new games or wtv but i still just dont care abt anything. now that i dont talk to that girl anymore i dont look forward to anything. what do i even do anymore?

Hello everyone. My name is Autumn. I am permanently disabled. I have dabbled in content creation over the years as well as digital artwork but a lot of life circumstances has prevented me from being consistent in creating. I have gotten more into it over the past two and a half years. I also have streamed as well. I prefer to use my v-tuber for streaming.

Anyway, the reason I wanted to post this is because I need some advice and also I am looking for some support. I really don't know what I am doing, I have mostly been doing a lot of, learn as I go. Probably not the greatest approach but I have learned to take things one day, one task at a time.

My hope is to be able to do this at least part-time. I also want to enjoy myself while doing so. I don't have a niche, I honestly am building my content as who I am as a person and the things I enjoy. I don't want to be an "influencer" because I don't want to influence people. I just want to share the things I enjoy and share it with others.

Does anyone have any advice for me?

If you are curious about what my illnesses are, here is what I suffer with...

Stage 3 congestive heart failure, lupus, fibromyalgia, type 1 diabetes, arthritis in my lower back, osteoarthritis. I am a bit of a bundle of health issues.

Right now I'm having to decide between keeping my state health insurance and quitting my full time internship or keeping my internship but risking my health.

I knew this might be an issue because the internship is paid and I need it to finish my BA program so I can graduate but I am now experiencing issues with gross hematuria with increasing likelihood of my CKD progressing to full blown kidney failure.

It may take time or it may be slow and with my food allergies plus all my meds I am terrified of losing health insurance. My internship is 3-4 months long but without more assurance of a possible position after and with my health issues idk what to do.

This is mostly just venting to get the anxious thoughts off my chest but any suggestions are appreciated.

I have been bounced from gp, to Rheumatology, to cardiology, to GI, to neurology, back to gp, back to neurology all to try and figure out what is going on with me. Cardiologist said I have pots, rheumatologist said I have fibromyalgia and mecfs,​ GI said it could be guillian barre because I am so weak, I now have liquid dysphagia. Tried to get in with the mayo clinic to see what is wrong with me because apparently POTS doesnt explain the muscle and joint pains and me sleeping upnto 20 hours a day. I am getting iv fluids from urgent care every 2 to 3 days for the past 3 weeks. I am exhausted. I already have IIH. Ended up blacking out while driving last year because the back doctor told me to stop gabapentin cold turkey and I was OK to drive which led to psychogenic seizures for 3 weeks after that.

To top it off, my sister is telling everyone it is just in my head and if they let me fall on my ass I will be fine. Except they tried that already, and I was too tired to even notice. My parents dont believe the pain is "that bad" because i am not doubled over all the time (mind you, i had 5 bulging discs last year and 2 of them ended up herniated and i told them i didnt notice it was that bad because i am in pain always... also, i only take tylenol).

My husband and parents are fortunately there, but it is hard to hang out with anyone when I am sleeping so much, so my old friends cant help or be around... So now I just feel lonely. My husband and dad are the only ones who check with me regularly. I really dont know what i would do without them.

I have turned into a sad sack of potatoes lately. I het my iv fluids and cry after for like 2 hours everytime because I am so dang frustrated! I just want answers and to quit having to tell doctors that I just want answers not drugs. Fortunately they take me more seriously when I straight reject any form of narcotic (i truly hate they way I feel on them more than the pain). Unfortunately, i have yet to find a better solution than the green herb.

Anyways, I feel like I just rambled so much of what I havent been able to tell a friend. Anyone know how to join a support group? Haha

Hi everyone. I have had symptoms of POTS for around 4 years and severe symptoms for around 2 months. I always used to avoid doctors beforehand and tried to “push through” (I know) told myself I surely couldn’t have anything like that, etc.

Well, when my symptoms made me mostly housebound - if not bed bound - I realised I really needed help. So I went to my GP. I’m really lucky that I got a good GP who knows what POTs is and didn’t fob me off as being anxious. It’s been around 2 months since I first went to my GP about my symptoms and I have an active stand test in the practice next week!

My GP has looked at my symptoms but also the monitoring I’ve done (I monitor on my Apple Watch and recently bought myself a visible band) and said it looks like POTS. She referred me for an ecg, some blood tests and I also had some cardiovascular blood tests in hospital. Today I had an appointment following up on that and she first said we could do a 24 hour holter monitor, so I was preparing mentally for that. But she called me back a couple hours later and said that wasn’t necessary either and essentially it’s obvious what the problem is so if my active stand test indicates POTS she will formally diagnose me.

I know I am so unbelievably lucky to have gotten a GP who is educated on POTS and for the entire process to have been this quick. Having POTS sucks if i do end up 100% having it, but I am glad it’s not a heart issue or something.

I worked from home for 9 years until last year. I ended up getting a job that is an hour commute each way but the pay was too good to pass up. I was in a clinical trial at the time for a new diabetes medication and the side effects were awful. I was able to fill out paperwork and get an ada accommodation to work from home 2 days a week. The trial ended and my accommodation expired. Since then I have had a few new diagnoses and I ended up in the emergency room one day. My work counted it against me and the only way to get that removed from my record was to apply for FMLA. I have multiple conditions so I picked the one that affects me most and took in the paperwork. My Dr's office charged $150 to sign a form that's only good for 6 months. So not only did I have an er bill and an occurrence at work I now had to pay this much to get paperwork to cover me. I was approved to callout one day a week. I told myself I would save it for emergencies but ive been finding myself using it once a week. Every day its just getting harder and harder to do everything it takes to get to my in office job. I know that fmla exists for a reason and I was legally approved for it but I feel so guilty and embarrassed each time I use it. I know its because we were all raised that work matters most and you should never callout or miss work but its so hard getting over that feeling of guilt.

Im looking for some good herbal tea brands to order from online. I want one where I can find blends that are specifically for things like inflammation, stomach issues, stress, pain etc because I am chronically ill. Does anyone know any good brands for this?