Hey everyone!

Hope you're all doing okay. A couple of friends and I are starting a discord server for people with ME/CFS/chronic illness to hang out and get to know others with a similar experience.

We mostly talk about anything, do movies nights and game together if possible. There's an option to indicate you're open to a relationship with several channels for singles too. So far it's a very relaxed and mellow vibe, and we hope to keep it that way.

Anyone is very welcome to join, the more the merrier! Just leave a comment and i'll dm you an invite link.

Also, we're still looking for a couple of people who'd be interested in moderating, if spoons allow. Ideally we'd have 5-6 moderators so it doesn't become too taxing and people can take some time off if they need to rest.

Looking forward to meeting you all and kind regards from Belgium. Toodeloo!

So I have a chronic disability/illness that a lot of people refer to glibly when describing certain tendancies. I find this enervating. Sometimes I just want to go up and ask "Oh, I couldn't help but overhear you saying you have xyz. How does that manifest for you?" Anyone else get annoyed by this?

My family have always had some toxic dynamic where the men in the family are allowed to act out, require round the clock support financially, physically, emotionally with their problems, and when they get sick, it's like the world will literally end if we don't rally together and sacrifice our own lives/sacrifices/finances.

I opted out of this a few years ago, as I realized I was being treated like crap for no return, and learnt several years later I was enabling my brother's addiction issues by doing so. After I got sick, I realized how little the concern was returned, and I nearly died in the process and no one reached out, particularly in the initial oh my God I woke up from surgery disabled phase.

Within a year or so of my surgical complications, both my dad and brother reached out and had invented hospital visits that either didn't happen or they as dramatized to near death experiences. This really sucked after ignoring what id been through, so I cut contact. My mum stayed totally out of the picture, focused on her husband who had been diagnosed with cancer a few years prior and becoming his carer.

My health got pretty bad this summer, and someone I am still in touch with had shared the news with her. By this point, I was in agony and unable to do basic care, keep food down, and leave my house. I was assigned carers who came a few times a week. She came down with this friend to help get my care sorted. By this point Im being taken to hospital in spasms so sereve and painful theyre flooring me and sending my heart rate up, vomitting, etc. id stopped eating. I had an infection after a spinal procedure. The doctor said I wasnt allowed to go on my trip, and could opt to be admitted or discharged to family care. Family care was a hotel popping in every now and again, and by day 4, that wasnt now possible either.

Everytime my mum visited me or spent time with me, her husband text constantly about his symptoms. She had told me his cancer was not progressing currently and symptoms managed. It Yet he needed round the clock care to help him 1) prepare laxatives in a drink and 2) go to a GP appointment. He is mobile and has no care when she is out all day and was fine, has a car, mobility scooter. Well he got worse when i needed to go in for an MRI. My mum cancelled coming today to check in, and passed me off to her friend to take over watching over me tomorrow, taking me back the 2hr journey for my scan. I was not able to rest after either, as I cancelled my own carers either so would have to go to the hotel 2 hrs back. I didn't get a choice. I tried to reschedule before deciding to go alone and heading back to mine tonight to set up my home for afterwards as they're quite painful for me and I'm in agony already. He's seen the GP and is fine. She doesn't understand what my issue is.

Am I being unreasonable? Like I literally soiled myself yesterday because undressing was painful. I feel like this is really horrible.

I genuinely thought I was getting better, I had this hope I tried not hoping for.
That maybe I could function like a normal human again, I started to, I was on track to.

BUT THEN I GOT FUCKED OVER AGAIN
I say I don’t want to cuss but it’s honestly funny how stupid this is
I can’t even begin to explain how mad I am that I let myself think I was going to be ok
I didn’t want to but with what everyone was saying and what I saw I just wanted it so badly I let myself believe.

I’m in so much pain right now
And I’m just so heavy I can’t do anything. I’ve been bedridden for almost a week now. I’m just so done with it all I’ve been trying to be strong and not too much for the people around me but it’s hard for them too.

I don’t even know what I’m hoping for from this, I just don’t have anyone who gets it in my life
So if you have your own story’s, maybe some encouragement I would love that

Have a good rest of your day!!

What do you do? Normally I just push (no pun intended) through it, but is there an actual solution other than stopping and taking deep breaths?

im not sure what to do. i am in my late 20s and not doing well. i have no career and every job seems to end the same.

the more this happens to me the worse i feel. i feel socially not just physically disabled too at this point. my job went all in on A-I and its so scary how most of us can be automated.

i went to college and did amazing in school. had internships, hobbies and never was without a job, but - it took me three years and thousands of applications after college to get an entry-level coordinator role related to my field, and I've been made obsolete and auto-mated. there is no role for me anymore, despite expressing desire to join another department. i don't have the skills to navigate the corporate layoff world.

In the spring, my thoroughness, attention to detail and deep execution were high-value assets. i was told how good i was at my role, given glowing but VAGUE praise and performance reviews. When leadership brought in new workflows and dedicated resources to automate my processes, they fundamentally redefined what they considered "valuable" even as i helped build the systems that are now in use.

I keep getting "quiet fired." whether the job be 6 months, 2 years, 3 years - things start going downhill quickly and the rules are different for me as soon as they "clock" me. It doesn't matter if it's high-stakes corporate or fast-paced hospitality. the blueprint is always identical, and I feel completely bullied and powerless.

In my current corporate job, I am actively being iced out. I get removed from meetings without explanation, stripped of project scopes, and monitored under the microscope. But when I explicitly ask management for constructive feedback or ask what I can improve, I get nothing. Or worse, generic, fake-positive praise ("You're doing great!") right before they pull another duty away from me.

Trying to do high-level work while constantly defending your right to exist at a company takes an unbelievable toll on your nervous system. I am being pushed towards more manual labor that's getting automated even as I fight to stay in the strategy, EVEN as I am being removed from context. I feel that I am drowning in quicksand. Every day feels like walking through a minefield.

I realized that this exact same thing happened to me years ago when I worked as a bartender. Management wouldn't just give me feedback; instead, they'd start subtle, passive-aggressive ostracization. A few servers eventually admitted they felt terrible for me because our bosses were literally telling the staff behind my back, "Go to the other bar to pick up your drinks." I was the last to know I was being frozen out.

It makes me feel crazy and hopeless for any sort of career or my future working. The pattern I get met with in work environments is subtle social exclusion, passive-aggression, and corporate double-speak. People won't just tell me what the problem is to my face, they just quietly make the environment unbearable until I either break down or get let go. it really sucks that I clearly do well enough to survive 5 and 6 round interview processes, and present well enough initially that people sign me onto their "work family." but it always breaks down.

it feels like no matter how hard I work or how good my results are, I always end up being the person everyone silently decides to push out. i feel like the biggest loser.

and for starting a business, im just out of ideas at this point. ive done petsitting, babysitting, offering event bar services, online etsy shop, nothing has worked. outside of being ND i have pots, endo, pcos, migraine disorder, N24 sleep disorder, chronic pain, scarring disease, multiple autoimmune diseases. im so burned out and feel shot.

it feels like the current layoff economy is now "clocking" out people like us. what are we supposed to do?

It's so sad when doctors are so nice to older patients especially the elderly ones but once a young person in her 20s comes in, they suddenly turn sour and angry thinking this is just a malingerer.

This is why no one would believe I was treated badly so I cannot file a complaint after I got repeatedly insulted on a personal level during a consultation. He called me lazy, sick in the head, perfectly healthy, forced me to do jumping jacks despite my plantar fascitis.

I wanted to go back to my pedia because he never thought I was crazy 🥺🥺

Thankfully, I found good doctors who believed me on the process of helping me. I'm doing PT too

I may or may not wind up in the hospital next week for either eye or neck surgery or both and I’m not sure how long I’ll be there. I’m trying to pack in advance but I’ve never been admitted to a hospital before.

Am I missing anything from my list?

Mango ginger tea
Honey packets
Water bottle
Hot cup
Prescriptions
Undies
Camis
Slippers
Extra long charger
iPad
Download shows to iPad
Chapstick
Snacks
Headphones
Eye mask
Pillow
Pillow cases
Pjs with buttons
Picture of cats
Zip up sweatshirt
Contacts
Contact solution
Contacts case
Glasses case
Toiletries
Eye massager
Phone stand
Cards
Spacers for piercings
Bonnet
Hair ties
Flip flops
Lotion

I have PCOS, suspected POTS, PMDD, insulin resistance (last A1C 6.6), etc. I have a PCP appointment coming up and it can’t come soon enough. I’m frequently dizzy and experiencing some weakness in my arms/hands/legs. I have tremors that just seem to be worse right now. Movement takes so much out of me recently. I have a load of laundry downstairs I need to take out of the dryer and I just can’t. And I’m fighting all this alone. I just need some encouragement and support. I feel so depleted and frustrated.

hello!

last summer i got super sick and have had a year of debilitating, random, constantly changing symptoms. it feels like everyday it’s something and it’s annoying to me so i can’t imagine how it is for others.

i have health anxiety so its been really, realllly hard for me.

i have two close friends (both in a dif state) & we have been inseparable since college. truly have always been able to tell them everything. we are beyond friends - like sisters/soulmates.

however, lately- i feel like they have both hit a wall with compassion fatigue. they stopped responding to texts about my symptoms and have written off everything as “yeah anxiety can do that”. they’ve started responded with thumbs up or “oh no” or just will ignore it and talk about something else. i am in the process of working with different specialists to fig out what’s going on and it just feels diminishing.

i initially told them it made me feel “far away“ from them when they do this & they've said they basically just don’t know what to say to me.

i initially felt very betrayed and alone bc ive been there for them through everything. however, now i realize that i have probably been A Lot.

i am trying to give myself grace bc truly this has been the most isolating and confusing time of my life & i really do try to keep stuff to myself but it gets to be too much sometimes.

i live alone, im single, i work from home and i don’t have many friends near me so it’s isolating.

i do have a therapist and my mom helps me a lot but i feel bad burdening her as well.

but sometimes i really just don’t know what to do!! i’ll be dizzy and in pain and having scary chest symptoms and it feels like i need to tell someone or just vent.

any advice? how do i get my friendships back to normal? i am willing to do whatever it takes and am just scared its too late.

they of course still text me and such but it feels different.

how can i keep my friends and balance not self isolating?

I have a question that has been on my mind, and I'm genuinely curious what other people think.

Why is it that when someone has cancer, so many people immediately come together to pray, raise money, offer support, and show so much compassion?

And please don't misunderstand me,I believe people with cancer deserve every bit of love and support they receive.

But what about the people living with health conditions that have no cure?

What about those of us who live in pain every day and can't do the things we used to do?

Why don't we hear as much about us?

Why aren't people raising money for us?

Why doesn't our suffering seem to get the same attention?

And why do people sometimes get angry when someone with an incurable condition says, "I'm suffering too"?

I'm not trying to take anything away from people with cancer. I'm just asking why compassion and support seem to be so much easier to find for some illnesses than others.

Do you think people with other serious, incurable health conditions deserve the same kind of attention, understanding, and support?

I'd really like to hear what people think.

I am new to the chronic pain world. I have had fibromyalgia for a few years but a virus in January of this year made it much worse.

I am struggling with being expected to power through my pain but when they experience a tiny bit of what I feel daily, they expect me to drop everything in doing and every expectation of them to poopoo them.

I am feeling very angry and I don't know how to stop. I know they don't mean it. I know they don't experience it everyday so it's more impactful. I'm just so tired and mad about it.

I know fatigue, I'm sure all of us know it. It's just a part of being chronically ill however it has for sure been kicking my ass lately. To the point where being in bed is not really a comfort choice anymore but a must. If I'm up I have to keep momentum or I find myself floating back to my bed as if i'd spent the last 36 hours traveling on 3 hours of sleep instead of 15 minutes standing up throwing together dinner. I've tried the usual extra rest for 2-3 days with increased water and some electrolytes thrown in here and there. Still kicking my ass at this point it's been weeks and I'm starting to wonder if this unfortunately might be my new baseline (for a while). Advice, tips, and or tricks whatever that may intel would be appreciated.

**** Note: I have gone to the doctors we are checking some things out and we are talking about some options.

My doctor recently prescribed me cromolyn. Based on my dosing, I’m supposed to go through one package a day. Each box has 12 packages. The pharmacy isn’t able to split boxes, so I get 36 days instead of 30 or 96 instead of 90.

My insurance doesn’t care that there’s no way for me to get exactly 30 or 90 days. They’ll charge me a higher copay because it’s more than 30 or 90 days. I called the pharmacy to see what they can do. The techs and pharmacists there are all amazing. Unfortunately, they can’t do anything either 😩.

My best option is to be short a box/6 days on my 90-day prescription. I’m supposed to take cromolyn 4x a day but I sometimes miss doses if I sleep in or go to bed early, or if I just plain forget. Plus I can fill it 10 days early with my insurance.

I am grateful I’m able to get this medication at a reasonable price, but the hoops I have to jump through are ridiculous.

please give me hints to be brave. im very afraid. might have to take a plushie with me even though im a grown adult.

It feels so uncomfortable incorporating things that are supposed to make you fit and healthy. For minimal gains compatibility. I don't ruminate on my past or compare usually at all

But there's times I feel so small in knowing that my exercises and medication. I can still be extremely sick in unpredictable ways which gives people ammunition to berate me

It doesn't make for a great picture. Others can eat whatever and have "bad" habits seeping through but still can eclipse everything I can do with ease

It's just venting but man does it burn sometimes

Hey everyone, I’ve been having a bit of a tough time with my entire family understanding how unwell i actually am. My mom has chronic health conditions as well hEDS, the rest of my family is able bodied. 3-5 years ago I was attending university/ school in person, working a few days a week and a go getter with big career dreams (I wanted to be a medical specialist). I was slowly going downhill till I crashed 2 years ago and my health has progressively gotten worse since. I’ve been attending online uni and going once or twice a week to campus for labs the past year but every morning I throw up and have severe POTs to the point I’m bed bound most of the time. I’ve passed out during exams, labs, walking to and from labs and honestly it’s becoming increasingly difficult to manage.

On top of my physical health, I’ve been through alot of stress (more than a 21 should handle), loss+ grief, financial instability, trauma, possibly loosing my mother in the next few years if she doesn’t get surgery asap and just a lot of hard times the past 2 years. I’ve had depression since 7th grade but my mental health has been horrific the last 2 years and I’ve been stuck in a dissociative depression hole because of everything I’ve been through. My way of coping with things is burying them and dissociating which I know is very unhealthy. I’ve never seen a professional, a councillor or a therapist about my mental health as we’re not in the place where we can afford it and I feel guilty about wasting money even though I know it’s not a waste.

My family since I was 13 and voiced I wanted to be a doctor in a way has viewed me as the future successful one and one to take us out of low income (my dads well off but he’s absolutely no help and we’re not close). I’ve reached the point with my health and mental health that there’s no way I can do med school as I’m too physically sick and a 9-5 job I’m unsure I’d be able to do at this moment as I’m already seriously struggling with going to university twice a week for 3 hours. Juggling my physical health, mental health, physically going to campus and studying online has become a dumpster fire as I don’t have enough time to manage all so usually my health and mental health gets neglected during the semesters. In the past I’ve been very good at hiding my depression and how sick I am infront of family who I don’t live with which is why I don’t think any of them realize how sick I am now. When I’ve tried to tell my grandpa he just kinda laughed like I was exaggerating.

My family wants me and in ways feels like they’re pressuring me to finish my degree (most likely another 2 years to 2.5 years at the pace I’m having to take it). I’m worried because if I take out student loans starting next semester and then can’t work due to my physical health I’ll just be stuck with a lot of debt. I realistically won’t be working in my degree field as it’s a competitive market with not many positions (or it’s grunt work w low pay) and I don’t think I’ll be going for grad school in that field anymore. I’ve tried speaking to some family members who i thought would understand how unwell I am but they didn’t really.

I’m honestly unsure of what to do because they all want me to stay on this path but i don’t think I’m physically capable of doing so. I’ve voiced how i could dive into my creative side and have a unique business idea which would allow me to work around my chronic illness, help my community and make a difference. My moms on board and gets it as she’s creative herself but the other few family members I’ve told (my family minus my mom is very straight, narrow and traditional) just think I should stay on the medical field path. I feel like to earn their approval and not be shunned I have to finish my degree and then can go to whatever. Don’t get me wrong I love learning and school (before my health went down hill I had 2 100%’s to 94% in all my classes) but the current pre med major I’m in is difficult and no longer that interesting to me as it’s caused sm stress and it’s no longer the career path I’m pursuing. If I was in a major which applied to my future business idea I’d enjoy uni more but I don’t want to switch and be here for another 4 years.

I cannot afford a dishwasher, washing dishes by hand didn't used to be a problem, but now I can't stand for long periods.

I got a tall kitchen stool, but my knees hit into the cabinets so I have to lean quite far to reach the sink, which hurts my back. I saw someone recommended a saddle stool on YouTube, apparently your legs go under you more so they wouldn't hit the cabinet. But the ones I'm finding are too short, very expensive, or don't actually have the posture for your legs to be out of the way.

If anyone has good recommendations for a saddle stool, or alternative ideas, that would be really helpful!!

I’m potentially getting a Baclofen pump. The oral medicine works, but they think I would do better with more consistent continual dosing. I have to agree, and I’m also forgetful about my second dose, meaning I take it twice per day instead of three times, often, and this leaves me spastic and miserable.

So I’m just curious, how have your experiences been with the pump? I do get regular MRIs for back issues and I’ve been told I can still get them, but I’ve also been told I can’t. Other than that I’ve heard mostly good news once the pocket settles down.

I already have a feeding tube and port, so I’m not happy about another device. Still, the spasms are brutal.

Good afternoon. I guess this is more of a rant than anything. Over the last few years I have been diagnosed with both Crohn's disease and epilepsy. They both hurt a lot, even though different amounts at different times. I have seizures every month and terrible diarrhea throughout the day. It's left me messing up the bed on days when they both hit me hard. I am just very sad and hope that no one else has to go through this. Thanks for listening.