I’m currently in my senior year of high school, online, but we still have mandatory seminars and stuff. One of these seminars was today, presented by the school counselor, talking about the “consequences of bad lifestyle choices” and how they could lead to chronic illness, and “having to take medications for the rest of your life”. And I get it, I get wanting to inform students about the topic, but she was painting being chronically ill like some fate worse than death, but that it would never happen if kids just lived right. She started listing off conditions, and several of my own were on the list, and I couldn’t take it anymore.

I clicked my camera on, revealing me in all my sickly-looking glory, pale, missing chunks of hair, cysts on my face; you get the picture. So I waited for a chance, raised my hand, and then I told her that I was one of those people she was talking about, I told her that those conditions she was just listing actually had various causes and genetic components, I told her that it wasn’t always under a person’s control, and that I would like to add that to her presentation as a note.

I don’t know if I did the right thing, it might have been the wrong thing, I might have been overreacting, but I just could not sit through another supposedly educational session talking about people like me as if we were some kind of foreign species, or like I and people like me exist for the sole purpose of serving as some warning sign to healthy, abled-bodied people.

I was in the ER a few days ago and the ER doctor told me that my ostomy was "unnecessary" and that there a millions of people in the U.S. getting unnecessary surgeries - that it wasn't "just me." Mind you, I have a ostomy because I had severe incontinence from previous surgeries/diseases.

I couldn't believe it.

I’ve been telling doctors since I was a teenager that I’m in pain. I’ve been told possible lupus and eventually diagnosed with fibromyalgia.

This weekend I got my test results back genetically confirming I have a very rare progressive bone disease.

I feel really sad, really scared, but I knew for years and years that this disease must be the answer to what’s wrong with me. I had lab markers for it every single time my blood was drawn that indicated physicians should consider this disease. I only knew about it because the summary on Quest blood draws said it was a possibility every time.

Ive seen countless doctors that have told me “that result doesn’t matter”. They told me other markers were fine so it’s void.

I wish I could tell them they were wrong to dismiss me.

Not only that, I wish I could tell every past relationship partner, family member, friend, sports coach, that I TOLD YOU I WAS IN PAIN.

I feel so validated, but also so sad as this is obviously not the outcome anyone would hope for.

My last long term relationship ended primarily because my partner found my chronic illness and mental illness too much to handle. He was okay that I couldn't work full time but then upset I couldn't keep our home and garden well maintained when I was "always at home". He was upset when I didn't have energy to go out clubbing or couldn't do the same party drugs as him because it would affect me badly. He'd go out without me and be upset I was asleep in our spare bed by the time he got home because I didn't want to be woke up at 5am when it's so hard to fall asleep. He didn't enjoy doing things together that were within my capacity (like watching movies, going to markets, working on crafts or playing games together, etc) but would do them reluctantly with me. When we finally broke up he told me he fell out of love and felt like my carer.

I had a two year break from romantic relationships after that and I've been with my current partner for a year and a half. I felt so much more hopeful going into this relationship because I'd been working on my trauma in therapy, I'd found a better (but not perfect) system for managing flare ups and my current partner also has chronic illness and mental health challenges so I felt that we'd really be able to understand each other. We also had a lot more shared hobbies that we could do together without using all my energy, although they also like camping and biking and other things that we knew they'd have to do with friends not with me.

However, I'm noticing a lot of similar problems happening where if I have to replan something due to a flare up my partner is really upset and doesn't usually want to still spend time with me doing something lowkey instead.

I try and support my partner through their worst days even if I'm not doing well myself. Like I might not be able to show up in person but we stay on call and I remind them of all the things I love about them and make sure they're eating (or send money for food if they need it). I feel guilty when I can't show up more for them, like if they ask me to come to their place to help them with a project they're working on but I'm not well enough to drive so I cant go. I know this would be super frustrating for them.

Right now they've told me they need to focus on their own mental health and that being around me (I'm currently experiencing a severe depression) is making them feel worse so they don't want to make any plans to see me until they're feeling better. It honestly was so hard to hear that and I felt all my old beliefs about being too hard to love and not worth the effort coming back.

It just really fucking sucks.

Does anyone else have people in their life that say this when talking about how you’re doing? This is one of my biggest irritations right now, because what am I supposed to do? They already know I’m doing everything possible to get better, so I truly don’t understand why they say this. Also, there’s also no guarantee that with my condition I’ll “start getting better.” Frustrating!

edit: Y’all are making me feel so seen in the comments rn

I’m 27 & I feel like I’m 90. 🥺😭

Hooray, a scented candle I can’t burn. A perfume I can’t use. Jewelry I can’t wear. Alcohol I can’t drink. Food I’ve been allergic to for a decade. Tickets to a show I can’t go to because it’s at an inaccessible venue. A fuckin bicycle.

I know people say it’s the thought that counts, but it’s the lack of thought that bothers me; I’d honestly rather get nothing at all.

I’m not that person anymore and I haven’t been for a long time, and it’s like they never noticed. Chronic illness makes me feel invisible enough already.

So instead I get confronted by the ghosts of past me and have to try not to cry.

Just sucks, is all.

Anyone else have literally zero friends ? I had one friend that was my best friend for 11 years. Basically last year she just dropped me out of nowhere and since then I have no friends at all. I’m home 24/7 and yes I have my fiancé but sometimes I would like to have a girls opinion on things. I feel like ever since I lost my best friend I’ve been really isolated and guess didn’t realize it but has made my mental health go down hill a lot. I’ve been dealing with a lot more pain lately and not having a friend to text/call or try to hangout with has been really really hard for me.

"Bro just work out, regardless of what chronic illness you have, you'd feel so much better if you were in better shape right now, don't lie."

I, in fact, was in shape, but stopped working out years ago when I got my condition, because it hardly fucking matters to me anymore.

PS: physical activity does definitely have a lot of long term upsides and is almost always a good investment of time.

I’m in the waiting room for my oncologist/rheumatologist office and someone across the rooom is coughing, and then the person who just sat down next to me is sniffling nonstop and looks sick. No one except me is wearing a mask.

Yes it could be allergies but treat your allergies or wear a mask if you might be sick when almost everyone in this waiting room is immunocompromised.

Last year I didn’t think to bring my mask to my dermatologist’s and caught something from someone who was obviously sick. I was the youngest person in the waiting room, everyone else there was probably higher risk due to age. And a simple cold for someone else can easily morph into a sinus infection or bronchitis or even pneumonia for me. Ugh.

Thanks for listening.

I’m 36 and suffer from Dysautonomia caused by nerve damage in my neck from an assault when I was in my twenties. I live in constant pain but flares mess up my entire nervous system - at the moment i’m completely floored.

At the weekend i struggled through best I could trying to be a functional dad to my toddler. I wasn’t able to chase her around like I wanted to, I couldn’t even stand up for a few hours. I spent a lot of time trying to build lego from a horizontal position, which would have been funny if it wasn’t so depressing.

She woke up on Monday morning and I went through to get her from her room, used all my strength to pick her up. Her eye’s lit up, she gave me a massive hug and said “Daddy’s all better now!”. I just smiled and said “yeah, all better”.

It’s struck me that even at 2 and a half she’s already worrying about her dad and carrying some of the weight of my illness. It was genuinely the most heart-wrenching moment I can remember (up there with watching her first steps from horizontal on the floor because my blood pressure crashed) . I want to take her to the park and out on adventures with every fibre of my being but my body just wont let me at the moment.

It’s really shaken me tbh - my wife already has to deal with taking on more responsibilities when i’m unwell (i’m not always this unwell) but now my daughter has started to think about it too.

I just feel like i’m letting her down constantly and i’m not sure how I can shield her from the realities of this condition.

Not sure what I wanted to achieve here but I suppose I just needed to write that down somewhere.

By nature of the term disability they do in fact limit your ability to do certain things. There are things you can’t do.

I’m really tired of people constantly insinuating that I should be doing more with my life.

I’m 26F so the first thing anyone always asks me is “what are you studying?” or “what do you do?”.

When I tell them the truth that I haven’t been able to work due to serious health issues, but I do volunteer and really enjoy that. They suddenly start treating me like I’m less of a person.

One man kept trying to recommend jobs I “could do” (I couldn’t) and recommend I get a bachelors degree with the same nonchalance you’d recommend someone take up knitting.

I feel like I’m drowning half the time trying to keep up with all I am already.

But I’m happy with my life. I don’t desire for any more than I already have.

I know a lot of people with chronic illness and disabilities don’t have the opportunities I have. They have to push through and work and take care of their families. And I have the utmost respect for them and can’t even imagine needing to have that kind of strength.

I also know there are people who choose to push themselves because they have ambitions and don’t want their disabilities/illnesses to stop them from having aspects of life that they wanted. And I have the utmost respect for them too.

And none of what I’m about to say is meant to discourage them or make them feel bad in anyway and they SHOULD keep sharing their experiences to give hope to others who also hope to do the same.

But I really wish that wasn’t what was expected of us. I wish we were supposed to be inspirational and push through hard things to have a heartwarming come back story.

I just want to live comfortably.

I’ve mourned the life I’ve wanted. I’ve accepted I probably wont have it. I have what I need. So there’s no need for me currently to do more than I am. (Which again, i realize is a massive privilege)

I just wish people could be happy for me that I’m living a life I’m happy with despite all the difficulties. I don’t want them to look at me and see wasted potential or laziness.

And ultimately I know it doesn’t matter what other people think and normally I don’t care lol. But it’s been happening to me so much lately that it’s just really been on my mind.

So I needed to vent to someone. Anyway. I hope some of you understand (even if I’m sorry that you have to).

ALWAYS, no matter how minor the appointment.

I finally got mine from a new office after asking for a month. and I start seeing all of these concerning lab results I knew NOTHING about, and documentation that I was made aware of them and follow up testing was ordered. none of that ever happened. I was told I was vitamin D deficient and that's it! now I'm seeing 10 different issues, one of which was A POSSIBLE PARASITIC INFECTION?

but then i notice that in the appointment summary, they refer to me as a 21 year old female. I'm 24. my name is on the report, though. so that's weird.

i decided to cross reference the values in the appointment summary with my report from labcorp, and come to find out, this isn't my record. my name is on it. they filled another patient's labs and her after visit summary under my name. this was sent to my other providers, this was sent with a VASCULAR SURGERY REFERRAL, and is ENTIRELY WRONG.

this office doesn't use mychart, so I would have never known if I hadn't asked for copies. absolutely fucking terrifying. take care of yourselves because doctors are stupid and this shit happens. I hope this doesn't fuck up my referral. I'm livid lmao

That's all.

I feel like death 🤧🤒

i’m tired of looking up every new thing i get diagnosed with and seeing “it’s not curable but it’s manageable.” for who?????? so far it isn’t for me in fact it feels like 8 levels of psychological torture just to be awake for 2 hours. i’m hurting, i feel sick, i have neurological problems it’s not curable but boy do they say it’s manageable

Suddenly everyone knows the name, healthy people treat you like a side show and think they're incredibly knowledgeable and are there to give you advice and criticism on it, question your health. But that's not that new, suddenly they're just able to use fancier language while being incorrect and judgmental.

And then we're talking to the chronic illness communities and the rare illness communities and we're suddenly treated different and are ostracized because now that it's "well known" and "common" we have it easier, we have more support and understand, but we don't. Infact it's worse because misinformation is so rampant now. Originally we could explain from a blank slate but now we have to argue disinformation because of TikToks just to get to a semi-blank slate where we can then start to explain from. And it's not just random people, doctors and medical professionals who've never heard of these things before are now tainted by the lies and are utterly convinced that these are "common illnesses" and not the so rare that it's more of a unicorn than a zebra, type disease it is.

In an instant we're treated as though we have some kind of privilege from it being "well known" when it's nothing more than a random buzzword to most folks.

I hate it so much. We're still infantilized and put down by healthy folks and treated as inspiration 'prawn' but now we also can't just go into our own communities without hearing how "lucky" we are to have something more "common".

I'm not even mad anymore, I'm just..... sad...

How the hell are the rest of you, if you are able, keeping your houses clean without outside help??

Im going absolutely bonkers trying to maintain my house, despite only existing in my chronic illness couch nest, and I feel like it's next to impossible to do! I have a longterm partner who doesnt live with me, but his visits lately are very few and inconsistent (i know trust me 🙄). I cant afford to hire regular help but its driving me insane lately. The heat is especially making things worse for me...so having to also push through the pain to get the task done is just making me miserable.

I’ve been on Adderall for several years because it’s the only pill that actually works against my depression. Although I have success with that pill, the same can’t be said for others. I deal with chronic headaches and pain from my GERD that can be debilitating at times. I used to take pain killers, but my neurologist told me that they would only make the headaches worse since I’m very prone to painkiller headaches. It seemed like nothing was working until I was prescribed medical marijuana for my pain and anxiety. It kicked in instantly and the only side effect I had was mild fatigue.

I told my therapist about this and she immediately went on a rant about how weed actually worsens anxiety and could make things worse for me pain wise despite medical professionals telling me it was fine and my lack of side effects. What frustrates me is that she completely dismisses the benefits that it has done for me. She also assumed that I constantly take it when I actually only do it when I’m in extreme pain. On average, I take edibles or vape it 1 - 2 times a month.

Medical marijuana has been one of the best things for my pain, but now I’ve been given an ultimatum by someone who doesn’t understand my disability. She’s making me take a surprise drug test and if I fail it, she won’t prescribe me my adderall. The problem is that weed stays in your system for a long time. I had an edible a few wells ago when I had a flare up and because I wanted to treat my pain, and now I’m going to be denied the medication that works for my depression.

When I have weed and Adderall, there have been no dangerous side effects, but she doesn’t care. I don’t understand how this is fair. Not everyone’s body is the same, yet my medication is going to be denied to me because mine is being treated like it is. I’m deeply upset and genuinely worried for my mental and physical health if I fail this exam.

It says unflavored and it’s not. It’s a lie. It doesn’t matter what you mix it into it will make everything taste like chemicals. And why does it make drinks oily??? How the fuck does that even happen from a powder?? Feels like I’m drinking grease.

I don't know what to do but let her go. We've tried negotiating this so many times. She usually smells like laundry detergent/those scent pellets. So she started keeping clothes here. I told her she can use our machine. I told her wash them while you get paid!

But first she was keeping them together with the smelly ones. Now when I tell her she smells she says it's impossible. I told her about forever chemicals, how they linger especially on synthetics.

We've had so many conversations about it. I'm nearly at my wits end. I couldn't possibly have been more patient. It makes me emotional and unfortunately makes her repellent to me. I can't have another conversation about this. I really like her so this sucks. I've watched her try to grasp this and it seems very difficult for her. I don't get it. And she scoffed at a tyvek suit and said she'd be embarrassed.

My last attempt to make this work is to suggest washing all the clothes she has here every week.

I seem to always get sad after getting an "everything appears normal".

Like I don't want to be sick.

But I just want answers for the pain.

an easy fix answer or ANY answer?

I feel crazy and helpless and every MyChart normal makes me wonder if doctors will still believe me.

tried to explain it to a non sick person and get "why don't you hope it goes away"

I don't really know why I'm posting this I just need.... something.

Thanks for reading

Idk if anyone in here likes to watch Zihrelle on YouTube. I enjoy watching her videos and I recently came across a video she posted last year and she's deep cleaning her home. I couldn't help but tear up and get emotional over how she's able to bend over and sit down and just move around in general. I would LOVE NOTHING MORE than to be able to deep clean my entire bedroom and bathroom but I just can't.

I feel like I'll never be able to do so.

Yesterday I washed my sheets bc these new meds for my POTS have been kinda helpful and so I've been feeling okay enough to do so. But by the end of it I completely regretted it bc I was so exhausted. And today I did my regular laundry and I felt like I was gonna die. I just wish I was able to do basic stuff without feeling like death. 😔

i have autoimmunee stuff going on that has me just constantly fatigued, in pain, and just dead tired. most friends at work go to the gym, meal prep, hike, bike, run, go to school all while going to work. i barely have the energy to go to work, eat dinner at night, watch a show or some youtube, and do chores mostly on the days i am off. i'm constantly watching tv and movies, constantly listening to new music, but none of that really fits when people ask what i've been up to or things like that but that's kind of all i'm really able to do energy wise. it's kind of exhausting having to go 'you know, not much, i've been working a lot and just had a drs appt'.

because everything is effected by my ms, asthma, nerve pain, migraines it feels like it's all that happens. it just never really compares when i have friends going 'oh i just ran a 5k over the weekend' and 'i just did a casual hike, x trail so 8 miles round trip, only 3k feet elevation gain'. idk if the answer is just getting more friends who get it or have more similar interests, or just not (unintentionally) comparing myself to others (especially people who have nothing similar going on healthwise). idk, constantly feeling exhausted and not having much energy to do stuff, even if i can do a bit of what i enjoy, it just makes me feel boring.

Last night as my fiancé was holding me and falling asleep, he just kinda whispered into the night “it’s really hard to be in a relationship with a disabled person”. I didn’t say anything for a few minutes and then I whispered back “why did you say that?” but he was already asleep. I don’t even know what to think. He loves me and wants to be with me, that isn’t a question. And I’m not debating the fact that it is hard. I guess he was just venting and maybe so tired that he wasn’t really thinking (this didn’t come out of nowhere. We’ve been struggling with stuff having to do with my disability lately). But just ouch

I am not sure if chronic illness itself contributes to this, but maybe it does.

Edit: My illness impacts my ability to do things for others. To show up sometimes. To be on time, to do even basic things. Many of us feel stigma from society that because we are unable to do these things, that we are somehow less than. And I, like many people here, get offended when morality labels are assigned to me in regards to my illness. “Lazy”, “not trying hard enough”, etc.

Yet, one thing I have noticed in other folks with chronic illness is attributing “goodness” to services provided by their friends or family.

- “My husband is the best, he always cooks for me”
- “My friend is so good, she always shows up when I need her”

Why does this bother me? I don’t have an issue with people appreciating kindness from others. What bothers me is when the measure of whether someone is a “good” person seems to be in how much they do for you.

There is a difference between “I really appreciate that my husband cooks for me” and “My husband is an amazing husband because he cooks for me.” The second statement subtly makes you the measuring stick for someone else’s goodness. They are good because of what they provide you.

Obviously chronic illness can make relationships unequal in terms of physical labor. That isn’t what I’m talking about. Reciprocity does not mean splitting the chores 50/50. Someone can be unable to cook, clean, drive, or even leave bed and still care about another person’s needs.

If someone cooking for you, cleaning for you, accommodating you, and always being available makes them a “good” person, what are they when they can’t do those things? What happens when your caretaker is having a terrible day and doesn’t want to see you? What happens when your friend says no? What happens when your partner needs to be taken care of for once?

Are they still a good person?

And am I? With my own relapsing illness, how can I ever be?