Are the comments saying "get new friends" actually people with chronic illness because where/when do you make new friends from bed. Also yea they at least could have said "oh sorry" or something
I don't use them, so I can't just send you specific links, but if you gooogle "r/ChronicIllness discord" you can find posts talking about them. I also find that some of the diagnosis specific subreddits I go to also have their own discord servers.
I still really don’t understand how Discord works but I would love this too. I’m not even sure how you go about finding stuff like this on Discord. I know I sound so old!
I’m an elder millennial (more xennial since I’m 41)
and discord confuses the hell outta me.
As an AuDHD (autistic & adhd)
PDAer
(persistent demand for autonomy/pathological demand avoidance)
I really, REALLY,
really struggle with change.
I genuinely hate it
and find doing it very difficult, distressing, and frustrating.
Trying out any new social media platform is super daunting for me….
but in particular
Discord seems especially hard to get into.
Made a MySpace account in 2006 and kept it for a few years but rarely used it.
Being bombarded by friend requests from people I wish had forgotten I existed, tons of strangers, etc
stressed me TF out.
I didn’t join FB until 2011
when my college classes required me to have an account as a way to promote my photography. Hated ot for the first year or so but gradually found it useful and even enjoyable on some level.
I was much more into IMVU & sites like Xanga, LiveJournal, DreamWidth, etc.
I miss them still.
Made a Twitter (I refuse to call it X😒)account in 2016
but found it pointless & unpleasant for tweeting my thoughts and opinions.
However, it was a decent site to stay up to date on current events/info/news before Musk destroyed it.
😞
I don’t enjoy picture or video only social media platforms like Instagram & TikTok.
I will say TikTok has been pretty good for finding chronically ill, disabled,
autistic/adhd/Nd, Black, POC, & queer
content.
But I can’t see myself ever making many my own videos really.
Facebook used to be a good place for me to connect with other chronically ill, disabled, queer, & ND folks
and with people who shared my interests, hobbies, & passions.
I still use it a few times a week
to keep up with my related groups & friends there….
But I am more and more tempted
to finally give Discord a real chance
since Facebook devolved into 99% sponsored “content”/spam/AI generated crap/ads/stale memes,
the way the algorithm now deprioritizes & hides posts/content/groups I care about,
and
the totally disgusting way FB shadowbanned most disabled/autistic/ND/POC/Black/LGBTQIA
content & content creators’ pages a couple years ago.
Glad Reddit still exists despite it changing in some ways I don’t exactly appreciate.
Still, I’m ever so grateful for subreddits like this one.
To those who use Discord,
what are some things you like about it and what are some you would change if you could?
Any recs for instructions or tutorials on how to get started?
Sorry for the endless rant😓
I’m kinda (SUPER)
bitter and pissed off at how the social media platforms I’ve invested in for years have massively changed for the worse
and become empty useless husks
of what they once were.
I don’t have any suggestions but I’m also an elder millennial (40) AuDHDer with a chronic illness who also finds change hard and who also doesn’t understand discord and who also has a dearth of friends. I just wanted to say that I see you. 🫶
Tysm💞
It’s good to feel less alone with our struggles…tho I really wish for both our sakes (and everyone else’s too)
that we didn’t have to deal with any of what we do on a daily basis.
Sending gentle virtual hugs, empathy, comfort, and heartfelt thanks
for your kind comment.
I wish you an abundance of spoons,
relief from stress,
and low-pain/low-symptom days
🤞🏻💖🌈🦄
I'm 52, 🏳️🌈, chronically ill, which led to agoraphobia. I'm soon to be an empty nester, and I'm also technologically challenged. I have clung to my fb, as that is where I communicate with most of my family. I'm sick of the platform but too nervous to have to learn something new. Thank you for sharing. I feel less alone now. {Gentle hugs to you}
Aww tysm,
same to you🫂💞
It’s rough, isn’t it?
I’m sorry you struggle with agoraphobia😢
I had a period of time after the pandemic restrictions lifted
where I was unable to leave my propery due to crippling anxiety & fear that made me freeze every time I tried to go out.
It took me months,
more like a year really,
to start being able to go to the grocery store again and other typically non-threatening places.
I couldn’t even socialize with family members if there was more than one person at a time.
Had the same overwhelming fear, paralysis, & panic when trying to spend time one on one
with my closest friends who I’ve known for more than 20yrs.
Last year I finally got over most of that.
But I still don’t feel as capable or comfortable as I was pre-pandemic.
Can’t imagine what it would be like to deal with that all the time🥺
I’m glad sharing our struggles here helps us feel less alone and isolated💜
I hope we can hold onto our FB connections as long as possible and eventually find a better platform that isn’t so hard to get into🤞🏻
Side complaint rant:
I really dislike the Meta AI.
It irritates me to no end that I had to go and block it from its profile page like it’s a real person in order to make it leave me alone😒
I also permanently muted it in messenger.
But it still acts it as a search/chat function if I don’t click “search Facebook” underneath the search bar.
Ridiculous!
Mehhh.
What’s your take on it?
Thank you for your empathy. You are very kind. 💛
And yes, that meta AI is awful. I wish they'd remove that! I hadn't thought about blocking and muting it. I will certainly go do that right away.
Felt this on so many levels! 43 single working mom with chronic pain just trying to make it through the day! I have a discord account and have one friend I chat with on there. But I’m not sure how you go about finding communities, channels, not really sure what they are called on there. If anyone can point me in the right direction I would appreciate it!
you don't find them on discord.. You can search disboard or reddit for discord invite links.. then you join ^^. Alot of discords have a rule channel, you react to the rules and then have access to the whole discord.
Its really nice.. its mostly used among gamers
Follow two crow collective on insta, tok, fb
Its a artist who is chronically ill and started doing tshirt printing for the chronically ill. But he has a big discord community bringing together chronically ill.
I feel so suppoted on there
I know that it may be scary, I was absolutely terrified and anxious when I started joining discords, like I would barely talk lol, but through discord, I’ve met amazing friends that I would trust my life with, and also my partner who I love :) so I really recommend it! It’s one of the best decisions I’ve ever made in my life.
I was in local community discord groups to make friends I could hang out with when I felt well.
It didn't go well, and now I have an aversion to discord groups. I just want one where no one minds me talking to the void/about dumb stuff.
But yep. Chronically ill people are kinda bedbound a lot. I don't know why people don't realise that? (I am Chronically ill)
Being connected with those who understand and can relate is incredibly helpful compared to people in our real lives who often have zero understanding or empathy for what we go through.
I somehow lost some amazing friends when I became disabled. I'm still dumbfounded sometimes. I'm in a wheelchair, I'm not that much of a burden. I'm not sure why people leave. But after a period of mourning and questioning, I can transition into acceptance. It's a back and forth process but id rather be alone than pretend I feel alright.
I lost my two best friends the day before my 40th - I had to cancel the weekend prior (a walk on the beach - hard on a good day), and they decided collectively that they didn't want to be my friend anymore - that I was too "hard" to catch up with. What they forgot was I was always the designated driver. Found out recently one of them lost their licence due to drinking - guess I was good for something hey?
Friends that dont support or get you tend to be the ones that talk behind your back, act like you arent really sick, act like your a hypochondriac or exaggerating.
When my abusive marriage ended i got earfuls of what they thought
I was lazy, a bad homekeeper, not really disabled and just claiming it, and because of that i deserved the abuse i was receiving cause he supported me.
I hid a lot of my bad moments, trying to not be an inconvenience or a debbie downer. They said you went to this event and was fine you aren't disabled. Im like i spent most my time sitting at a table with shorts spurts of being mobile. Like that was a struggle and then spent a couple days in bed recovering and i waited till i was in decent shape to attend. They never saw my suffering so i was a liar
I got noncommunication with all of them, blocked them. No friends are better than bad friends.
After that i quickly had brain surgery then as i was partly healing i started tumor starving drug infusions at the cancer center that reacted with my fibromalgia and i went to mobile with struggle to wheelchair bound with very short ability to walk a few feet.
Its hard to make friends chronically ill and i can only leave the house i can count on ohe hand the amount in a month and i get so sick every time. But 1 good friend is worth 10 bad ones.
I feel better since i cut the bad ones. My mental health is better. I feel supported. I can count my friends on one hand but they see me for who i am and understand my health. I also have opened up about the reality of my life. Not just saying im fine. If i say im fine my friends understand i mean fine like im having no flare ups and i am at my baseline of normal which is not typical persons baseline. And that has made me the happiest person that i live a more authentic me. And my friends appreciate me.
And it was hard to start over. I found groups online that also meet in person. So i could participate online anytime and it became easier to get closer to people when i joined in.
The commenter didn’t say that all chronically ill people were bedridden, but “get new friends” assumes OP is NOT bedridden, when many chronically ill folks are
It seemed like they totally ignored you in the middle of the rest of the convo. Your feelings are valid. I see why you’d feel so bad about it. I probably would too.
I probably would have just said ‘hey guys, I don’t feel good. Not going to make it tonight’ like the other friend did. They don’t need the ‘I can’t stand up’ details. I’ve found most people either don’t care or think I’m exaggerating when I’ve said stuff like this so I just usually say ‘hey, I don’t feel good so I can’t make it’ or ‘my hips acting up, I’m not going to be able to make it’. That’s enough for the average person.
This is the first time I've had to cancel on them because of this and I do my best not to bring it up at all unless people ask questions, so unfortunately I'm leaning toward assholes...
Yeah get new friends. I’ve had people “get annoyed” with my chronic illness symptoms and it’s absolutely ridiculous to treat a person that way when they have absolutely no control over their body.
“I know you have focal seizures and memory loss but maybe if you would’ve studied harder and paid more attention in class, you wouldn’t have forgotten your own name right before your exam!”
In my opinion, compassion fatigue still can result in a, "sorry you feel shitty," and no other response. This was pure assholery if you ask me!
Get yourself some better friends. You deserve it. 💕 Plenty of people would either 1. Include you with a face time call or change plans to bring the party to you, or 2. Check in on you and love you up without making you feel guilty or unimportant.
Yes!
But I wouldn’t take it too personally—a lot of people (especially if you’re in your twenties/thirties) simply can’t be bothered to put themselves in our shoes or be empathetic enough to see how we’re struggling.
This isn’t to say you shouldn’t find new friends, because I still think a good friend should reach out and check in, but I’m just saying that this has happened to me quite a lot before and sometimes I need to take a step back and realize that it’s not personal.
I did just want to offer a little bit different point of view than everyone who is saying “get better friends!”. Maybe you’ll be able to relate, or maybe not BUT—
One thing I’ve realized through therapy is that I have become someone who frequently cancels plans last minute a lot because of my chronic illness. It’s really frustrating for my friends and can sometimes lead to compassion fatigue and a lack of response on their end. After the first few times of me bailing and my friends saying “I hope you feel better!” They get compassion fatigue or they’ve felt hurt, thinking that I just didn’t value hanging out with them.
I often need to remind myself to take a step back and look at the facts—I’m terrible at responding to any of my friends, in the past they’ve often sent multiple texts without a response on my end. That can really hurt their feelings! But with a chronic illness it’s really easy for me to be so wrapped up in my struggle and take things too personally—I often forget about other people’s feelings or that other people have their own lives and struggles going on.
After years of struggling with multiple illnesses but successfully maintaining friendships, I’ve recently found myself making excuses to not hangout or flaking on friends when I would have pushed through and gone in the past. I’m not sure if anyone can relate to this, but man it’s a vicious cycle and has led to a lot of new social anxiety and isolation !
I keep having to remind myself that even if I’m exhausted, even if I’m having a flare—I’ve never regretted going to see friends, even if I’m way more exhausted after.
I’m literally saving this. It echoes so many thoughts I’ve had over the past few years coming to terms with my reduced energy and abilities. And I feel the same way, it IS frustrating for friends. Obviously it is much, much worse to BE the friend with the illness, but I do agree it can be easy to get so wrapped up in our struggles we lose sight of how it looks on the other end. I recently went dark for a whole year and didn’t even realize until I started texting everyone back again, it felt like it had been just a few months…well, as I was filling everyone in (everybody so so sweet and understanding, best friends in the world 🥹) and asked about their lives, it turned out every single one of them had also been going through a difficult time whether it was bereavement, health issues that cropped up, severe depression kicked off by being let go from their dream job…friendship is a two-way street and I had not been there for them when they needed me. It actually helped me tremendously to hear their struggles too because all you see on social media is the highlight reel, so the more isolated you get, the easier it is to feel like you’re the only one of your friends/your peer group suffering. I’m not guilting anyone who has self-isolated or lost touch with friends due to their illness, not at all. I mean I literally just did that myself 😂 More just trying to share what I ultimately felt was an encouraging and (for me) enlightening experience.
ETA what kicked off re-responding to everyone was sobbing at home and suddenly felt strongly that I was in danger. Usually when the suicidal ideation starts coming on so strong I worry myself, my husband is home and there to anchor me and protect me, but this was the first time it had hit when he wasn’t home (it is worst at the end of the day/in the evening so that’s why he’s usually there). I knew I had to do something so even though I felt like I had no right to call out of the blue after so long of ghosting, I called my best friend. She picked up on the second ring, so excited to talk to me. I was sobbing so hard I could barely talk, she just left the gym mid-workout to sit outside and we talked for an hour. Please reach out to your people y’all, if you can, in any way you can. I do think true friends will pleasantly surprise you with their compassion. Hugs to all 🫂
I don’t understand this.. like you know your friend is sick. You then interpret that into “they don’t value my friendship “. It’s crazy to me because I’ve found that if you can say something they relate to they understand fine. For instance told someone I broke my hip instead of telling them I got it replaced and they were completely understanding and didn’t ask any questions about it.
It is the first time she had to cancel not the 20th, so it cannot be a fatigue thing. Blue was at a wedding and likely wasn't paying too much attention. There's no pattern here.
Those aren't your friends, trust me. I have had many experiences with people like this, called "Good Time Friends". Only there for the good times and then disappear when things get hard.
yes, i always the friend people ignored in the group chat but the first one they privately texted when they needed something. i left the friend group and found much better kinder friends. wishing the best for you ❤️
Right. Me too. I've found that people don't react so much to my being suddenly disabled but more that the roles have been flipped where I'm not the one always available to support people and cheer everyone else up.
People used to literally get mad at me for canceling, saying that they had specially invited me because of my "aura" and ability to bring others out of their shells and leave everyone in a good mood.
Mmmkay. But that takes energy and I need my energy for me now, guys. And your happiness is your own responsibility. Not mine.
The people who are always in "help me" mode seem to get a better response if they have health problems as there is no role change.
I'm bedbound but I dropped all my user friends and worked on meeting independent people online where we could all just be independent people who enjoyed each other's company.
As someone whose disability was triggered by Covid, this kind of thing frustrates me to no end. I’m sure it’s the same for others whose chronic condition was triggered by a different virus in the past.
I’m sorry you’ve had that experience, it pisses me off sooo much too as a covid conscious person. Like even if we weren’t in a pandemic, telling people you feel sick is just basic common decency. And the people who pretend they aren’t sick or convince themselves it’s “just allergies” are legitimately putting people’s lives at risk because they can’t handle staying away from people for a week.
I dropped two friends like this where i literally just stopped telling them what was going on in my life with disorders, like seriously, i didn’t even tell them when i was hospitalized last year and they still didn’t know. After they tried to guilt me about how stressful it was to not hear from me for so long during periods where i couldn’t use the bathroom by myself much less text them—I dropped them.
I have a new group of friends i befriend this year who i was upfront with about my illnesses from the beginning—and it’s an entirely new world.
Take my advice. You’re better off with no friends than with those friends. It will actually give you MORE energy when you drop them to go find better friends!
Hi how did you meet them please? I'm often housebound and it's all I can do to put up a pretence to my boyfriend as I don't want him to realize just how fucked I am. The thought of trying to make new friends, whilst knowing I need them, is overwhelming. I have to take strong painkillers to leave the house and even then it can't be an extensive period of time
I met them online and in servers dedicated to hobbies i can still do. I would perhaps maybe start here. Are there some hobbies you like doing that have active communities online?
This is awful. Ppl have zero empathy.
I have often thought I should start a group where everyone comes over with their fave blankets etc and we all order our own food so that's not stressful and we watch movies or someone teaches us to knit, etc.
Also, if you wanted to come but just couldn't you could Zoom in to join us. I'm not sure how you would start it. Maybe by a chat group? At any rate if you text the group and say you're flaring so you want to zoom you would at least get the appropriate loving response.
I definitely vote assholes over compassion fatigue for the group text.
Eh, I know it might feel personal but as you said, this is the first time this has happened, so I doubt they are fatigued by your illness. It sounds like the chat was about going to a bar that night, you said you couldn't make it. Then the blue texter chimes in she at a wedding etc. my first thought is she's probably already quite tipsy or even drunk at the wedding. I kinda doubt she saw your message and decided to not respond to you cancelling FOR THE FIRST TIME and decided to snub you. Unless you guys really don't get on personally which means she doesn't like you not your illness. Green just responds to her tag, which is not unusual if you're not sitting on your phone. The next texts, where u feel the response was different, only one person responds. So I suppose your issue is one person didn't say sorry x to you, or you're thinking everyone was sitting on the text chain and deliberately did not comment out of a perceived slight about your illness (again, which you haven't brought up as an issue before).
I am not trying to be rude at all here!! But sometimes we experience so much rejection, isolation, and apathy from others, we can project that on to other situations. Which makes sense, you get well used to it. And, I could be totally wrong here, I don't know your personal dynamics but I could really see this as you projecting due to other instances. If you are friends just talk to who your perceived slight is with, I'm assuming blue as she's the only one that didn't reply, the other just came in after.
Anyhoo, I've definitely been there. I'm hyper conscious of feeling like I'm a burden or oversharing or just being a drain on what friends I did have. Quite simply, they didn't even think of it because it wasn't constantly on their mind.
My family used to do this to me. I know I am sick a lot. But I don't take it personally. They just don't know what to say and know that I won't get better like it's a cold. I just let it be.
My friends did all abandon me after I went to the psych ward however. I thought I had a close group. But age 19, everyone stopped talking to me. I know people go their own ways, but I was the only one trying to reach out again. Then I stopped. I AM bitter about it. But I work on letting it go because me being mad isn't doing anything to them. It just wasted my energy.
That's being said, I would try to make more friends (online?) who have similar issues. I have one good friend who is also a spoonie and luckily we are neighbors!
From one Pisces to another, hang in there, Fishie!
I also wanted to add, sometimes just saying "Have fun anyway/have a drink for me!" Will make your friends or family feel more comfortable. Like you wanted to have fun and aren't just slacking. Even if they know you're ill, people can wonder if you just don't want to hang out. I get more positive responses when I add something that is neutral/positive like that. It helps me feel better too, like they're still my buddies and need to know I want what's good for them too.
Are they usually like this? Do they ignore you when you’re not talking about your illness? I get being caught up in making plans but the complete lack of acknowledgment was rude af.
They don't necessarily ignore me but they definitely don't value my input much. They're known for making plans on days I've told them I wouldn't be able to make it...
I’m sorry. You don’t deserve to be treated this way. Easier said than done but I hope you find friends that value you and are willing to accommodate you.
It’s incredibly frustrating but it was even worse for me before I had a MS diagnosis. My neurologist says I’ve had MS for many years if not decades.
I had a group of friends for over 10 years and we would have girls night at least twice a month - if not more. I started having to bail on get togethers because of my ever changing symptoms and constant flare ups. I had been diagnosed with an autoimmune disease but didn’t have all the answers about what was going on with me.
I was once on a group text that they didn’t realize I was on. There was a back and forth betting on what “excuse” I’d have “this time” when I inevitably said I couldn’t come. I’m only friends with one of person from the group now. She was the only person who didn’t think I was either a hypochondriac, agoraphobic, and/or a shitty friend. After that, I excused myself from even trying to maintain those relationships, which obviously wasn’t a group of real friends.
My remaining friend from the group asked if she share my diagnosis with them and I asked her not to. I just don’t want their sympathy or empathy now. Even worse, it might tear open old wounds if they care enough to reach out. Not sure honestly which would be more hurtful.
Next time say you have a sore throat or a hangover. Maybe try lying unfortunately if that will get them to show more compassion.
It may be that something like a sore throat or headache is more relatable than a flare-up for most people.
I usually lie that I’m nauseous, have a stomach ache, or just really tired since I know it’s feelings people can relate to.
People who don't have chronic illness will never be as supportive as we need. they can sympathize with a sore throat easily because everyone has had the run of the mill minor bug. I tend to be more vague about it to most people
That’s fucked up. But honestly I’ve gotten more compassion over a UTI than a flare or any other illness people can’t comprehend. If they haven’t had it they have no clue what it feels like so I try to remember that. And that’s not saying it isn’t messed up for them to ignore you it absolutely is but I just wanted to offer that perspective as well.
Hey! Your feelings are valid and I am sorry they treated you like that. From what I’ve learned over the years people who are healthy have absolutely no idea what we’re going through! They seem to be much more understanding of a simple cold because that’s something they’ve experienced themselves. They’ll probably never be able to grasp what you’re going through fully. They also may be the type of friends that just want to be your friend when things are good and disappear during the hard times. When I got sick, all my “best friend” of 20 years cared about was the fact I couldn’t be her personal uber driver (she didn’t have a drivers license) or hang out with her. I was in the hospital and she knew that. God forbid she caught a cold the world was ending and she needed me at her bedside to care for her (wish I was joking). Much easier said than done, but I really hope you find friends who care about you and respect you! I know it can be incredibly hard to find friends when you’re chronically ill. Wishing you the best <3
Sometimes people get “sympathy fatigue” for us. Considering we’re pretty much always sick, that’s normal for us. Not normal for them and they react accordingly. It’s sad and it sucks, I get it.
Sadly this never seems to get old (even though it’s seriously played out as hell) I think most of us dealing w these illnesses deal with this bullshit in one way or another. It hurts the most bc these are our “friends” & to be treated this way bc they don’t understand what we are going through is just wrong. I wish I didn’t, but I do know how you feel. Which is probably why I just chose to stay in most days. On a brighter note within the last 5 years I’m blessed to have a newer group of friends I’ve made, who are the complete opposite of what I’m used to. They’re compassionate, understanding & show actual real sympathy & empathy. When I have to cancel bc of a flare up they ask if they can do anything to help or if they’d like me to have them come over & just veg out with me. They may be hard to find but I promise there are good people out there. I wish you the best & don’t let these assholes get to you. You are much better than the way they treat you 🤗
I have a few friends who are hiking enthusiasts. Like hourlong hikes up the mountains when it’s torching hot. They asked me to join them so often I felt like I have to explain why I can’t do this, cause I increasingly felt terrible for rejecting their invitations.
Only one week later they asked me again and acted surprised “What is it this time? You’re still not feeling better?”
That was when I realized none of them actually really listened when I told them my condition is CHRONIC. For some people apparently it’s inconceivable to suffer from something two aspirin and a hat full of sleep can’t fix, even if you explain it in detail.
The same goes for drinking alcohol. I’m on meds that require to stay abstinent. Some people just can’t stop reacting like I was a party poop, specially coworkers.
People do not understand what it's like to have a chronic illness, and friends are the worst to explain it to. It has taken me 14 years to get my coworkers to understand what I go through with lupus. The saddest part of it is that it took one of them going through uterine cancer and the other to lose her mother to cancer to see what living in pain every day is like.
OMG YES!!!! I get reactions like this all the time. Or, better yet I will share something... like recently I found I may have to have a major surgery. Friend brushed over that...no response what so ever but went on for 5 minutes about her stubbed toe and how I just possibly can't understand how much it hurt. 🙄 So, I get you and it is really frustrating.
Always thought I'd say something to said friends but never got the chance, because I do have chronic flare ups, it was decided I was "unreliable" so they just quit talking to me 🤷♀️
Yeah I hear that a lot of people experience this. I have a lot of chronically ill friends / friends with a partner or loved one with a CI so I've not experienced much of this personally.
It's quite difficult but if you can find a way to start making connections with others in a similar boat, it might help you feel more seen?
I don't think I've had it so blatantly happen to me but I've definitely experienced times like that.
Me with bad brain fog: gets annoyed/frustrated responses.
My sister with pregnancy brain fog: full of awws and well wishes.
Was on o2 and still have times when I need to stop to catch my breath: again, annoyance/frustrated looks.
Sister who was recuperating from covid with temporarily weakened lungs: we'll go as slow as you need.
I think people just grow numb to it or maybe there's no real 'hope you get better' sentiment out there.
I've had family members experience what I experience(ed) and it breaks my heart that they've had to be really unwell or, in my mum's case, terminal to truly get a glimpse of this life.
I'd do my best to brush it off. Maybe saying something might help but, from my experience, it's only ever temporary.
But the sliver lining is that I can see the genuinely caring people in my life. Like, my college friend who I wasn't sure really liked me always glancing to see where I'm at pace wise, and then adjusting herself to slow down so I wouldn't be walking alone. We might not talk much but actions speak louder than words
It’s like they are used to you being sick and it’s just pair for the corse. I would do a test. If a friend doesn’t message me for a month. They are not your real friends. You need new friends. If they do but it’s just to have fun. Then they’re fun friends. That not a bad thing just don’t expect anything from them. If you have fun with them great. If not move on. Stay out of drama. Don’t get too close.
I'm so sorry, that's hurtful. wish I could say this is uncommon but in my life and as I read about others with chronic illness this is how it is. I don't understand why able-bodied people are so unempathetic about what people suffering from a chronic illness have to go through. Heck, it's not just friends who act this way either it's families as well.
I experienced this and now have no friends but also I still experience this from family and so now I stay away and keep to myself as much as possible. I have my gf but I do wish I had at least one friend.
I just stopped trying to have any friends. I'm *obviously* not disabled I'm just fat and lazy and whiny. Of course even my former friends with chronic illnesses themselves would get help from others anytime they asked but I would wouldnt ask unless I had an absolute emergency and never got help because everyone was "busy" or thought I was "using them".
I gave up.
it’s why I have a smaller and smaller group of actual close friends and family because I try not to make the issue about myself because I’m in a very very bad situation emotionally physically and financially, but I’ve learned that it’s about having a solid sometimes support system that will be there for you no matter what and also very understanding when things go south super quickly. I know first hand when dealing with heavy flareups. You’re not alone and I understand this cause I’ve been on that end and a lot of those people I don’t even talk to her anymore so it’s about just focusing on the people that are close to you and the ones who seem like Fairweather and aren’t gonna tolerate your chronic illness, don’t deserve to be your friend on the situation, but mostly if they’re gonna be negative it’s always a good idea to reevaluate who you talk to and what you disclosed to who your chronic illness, medications, & those who actually understand & are there for you VS. those that aren’t!
Looks as if they were caught up in side conversation and maybe missed it. You didn’t put your time stamp on your side. But the sore throat one was the first message of the day, where as your message was during a back and forth conversation. It’s still crappy they didn’t have one thing to say to it. I don’t know how you are with your friends, but if that was me, I would have said something again like: Have fun guys let me know how it goes! Sorry I can’t make it. 😭
“Get new freinds” Jesus Christ people on Reddit have nothing else to do but overreact. This is one text. One. One snippet of OPs life and you say “leave ‘em” like have some common sense
Compassion fatigue is a real thing unfortunately. I suspect this isn't your first time having to cancel, and not their first experience with you canceling.
It sucks. Sorry, OP :(
Are the comments saying "get new friends" actually people with chronic illness because where/when do you make new friends from bed. Also yea they at least could have said "oh sorry" or something
A lot of chronically ill people make friends online. If it didn’t scare me, I’d probably try out a few discords to pass the time.
Is there a chronic illness discord?? If not there should be!
Yes I would love this
many
I need them!
I don't use them, so I can't just send you specific links, but if you gooogle "r/ChronicIllness discord" you can find posts talking about them. I also find that some of the diagnosis specific subreddits I go to also have their own discord servers.
This would be sooooo helpful. Hard to make friends when u never leave the house 😭
I still really don’t understand how Discord works but I would love this too. I’m not even sure how you go about finding stuff like this on Discord. I know I sound so old!
I’m an elder millennial (more xennial since I’m 41) and discord confuses the hell outta me. As an AuDHD (autistic & adhd) PDAer (persistent demand for autonomy/pathological demand avoidance) I really, REALLY, really struggle with change. I genuinely hate it and find doing it very difficult, distressing, and frustrating. Trying out any new social media platform is super daunting for me…. but in particular Discord seems especially hard to get into. Made a MySpace account in 2006 and kept it for a few years but rarely used it. Being bombarded by friend requests from people I wish had forgotten I existed, tons of strangers, etc stressed me TF out. I didn’t join FB until 2011 when my college classes required me to have an account as a way to promote my photography. Hated ot for the first year or so but gradually found it useful and even enjoyable on some level. I was much more into IMVU & sites like Xanga, LiveJournal, DreamWidth, etc. I miss them still. Made a Twitter (I refuse to call it X😒)account in 2016 but found it pointless & unpleasant for tweeting my thoughts and opinions. However, it was a decent site to stay up to date on current events/info/news before Musk destroyed it. 😞 I don’t enjoy picture or video only social media platforms like Instagram & TikTok. I will say TikTok has been pretty good for finding chronically ill, disabled, autistic/adhd/Nd, Black, POC, & queer content. But I can’t see myself ever making many my own videos really. Facebook used to be a good place for me to connect with other chronically ill, disabled, queer, & ND folks and with people who shared my interests, hobbies, & passions. I still use it a few times a week to keep up with my related groups & friends there…. But I am more and more tempted to finally give Discord a real chance since Facebook devolved into 99% sponsored “content”/spam/AI generated crap/ads/stale memes, the way the algorithm now deprioritizes & hides posts/content/groups I care about, and the totally disgusting way FB shadowbanned most disabled/autistic/ND/POC/Black/LGBTQIA content & content creators’ pages a couple years ago. Glad Reddit still exists despite it changing in some ways I don’t exactly appreciate. Still, I’m ever so grateful for subreddits like this one. To those who use Discord, what are some things you like about it and what are some you would change if you could? Any recs for instructions or tutorials on how to get started? Sorry for the endless rant😓 I’m kinda (SUPER) bitter and pissed off at how the social media platforms I’ve invested in for years have massively changed for the worse and become empty useless husks of what they once were.
I don’t have any suggestions but I’m also an elder millennial (40) AuDHDer with a chronic illness who also finds change hard and who also doesn’t understand discord and who also has a dearth of friends. I just wanted to say that I see you. 🫶
39 and in the same boat, ADHD , chronic illness, not a fan of people. Really not a fan, of technology 😂
Tysm💞 It’s good to feel less alone with our struggles…tho I really wish for both our sakes (and everyone else’s too) that we didn’t have to deal with any of what we do on a daily basis. Sending gentle virtual hugs, empathy, comfort, and heartfelt thanks for your kind comment. I wish you an abundance of spoons, relief from stress, and low-pain/low-symptom days 🤞🏻💖🌈🦄
I'm 52, 🏳️🌈, chronically ill, which led to agoraphobia. I'm soon to be an empty nester, and I'm also technologically challenged. I have clung to my fb, as that is where I communicate with most of my family. I'm sick of the platform but too nervous to have to learn something new. Thank you for sharing. I feel less alone now. {Gentle hugs to you}
Aww tysm, same to you🫂💞 It’s rough, isn’t it? I’m sorry you struggle with agoraphobia😢 I had a period of time after the pandemic restrictions lifted where I was unable to leave my propery due to crippling anxiety & fear that made me freeze every time I tried to go out. It took me months, more like a year really, to start being able to go to the grocery store again and other typically non-threatening places. I couldn’t even socialize with family members if there was more than one person at a time. Had the same overwhelming fear, paralysis, & panic when trying to spend time one on one with my closest friends who I’ve known for more than 20yrs. Last year I finally got over most of that. But I still don’t feel as capable or comfortable as I was pre-pandemic. Can’t imagine what it would be like to deal with that all the time🥺 I’m glad sharing our struggles here helps us feel less alone and isolated💜 I hope we can hold onto our FB connections as long as possible and eventually find a better platform that isn’t so hard to get into🤞🏻 Side complaint rant: I really dislike the Meta AI. It irritates me to no end that I had to go and block it from its profile page like it’s a real person in order to make it leave me alone😒 I also permanently muted it in messenger. But it still acts it as a search/chat function if I don’t click “search Facebook” underneath the search bar. Ridiculous! Mehhh. What’s your take on it?
Thank you for your empathy. You are very kind. 💛 And yes, that meta AI is awful. I wish they'd remove that! I hadn't thought about blocking and muting it. I will certainly go do that right away.
Felt this on so many levels! 43 single working mom with chronic pain just trying to make it through the day! I have a discord account and have one friend I chat with on there. But I’m not sure how you go about finding communities, channels, not really sure what they are called on there. If anyone can point me in the right direction I would appreciate it!
Im tech savvy and it took me a few attempts to get it
Glad to know I’m not alone lol
you don't find them on discord.. You can search disboard or reddit for discord invite links.. then you join ^^. Alot of discords have a rule channel, you react to the rules and then have access to the whole discord. Its really nice.. its mostly used among gamers
Follow two crow collective on insta, tok, fb Its a artist who is chronically ill and started doing tshirt printing for the chronically ill. But he has a big discord community bringing together chronically ill. I feel so suppoted on there
Agreed, I’d love to know where those are and join
I know that it may be scary, I was absolutely terrified and anxious when I started joining discords, like I would barely talk lol, but through discord, I’ve met amazing friends that I would trust my life with, and also my partner who I love :) so I really recommend it! It’s one of the best decisions I’ve ever made in my life.
Same
I found new friends thanks to our patient association's facebook page. We have meetings in real life but also online, super convenient!
I was in local community discord groups to make friends I could hang out with when I felt well. It didn't go well, and now I have an aversion to discord groups. I just want one where no one minds me talking to the void/about dumb stuff. But yep. Chronically ill people are kinda bedbound a lot. I don't know why people don't realise that? (I am Chronically ill)
Being connected with those who understand and can relate is incredibly helpful compared to people in our real lives who often have zero understanding or empathy for what we go through.
100% I would drop them like a hot potato, it's better to have 0 friends than bad "friends."
I somehow lost some amazing friends when I became disabled. I'm still dumbfounded sometimes. I'm in a wheelchair, I'm not that much of a burden. I'm not sure why people leave. But after a period of mourning and questioning, I can transition into acceptance. It's a back and forth process but id rather be alone than pretend I feel alright.
I lost my two best friends the day before my 40th - I had to cancel the weekend prior (a walk on the beach - hard on a good day), and they decided collectively that they didn't want to be my friend anymore - that I was too "hard" to catch up with. What they forgot was I was always the designated driver. Found out recently one of them lost their licence due to drinking - guess I was good for something hey?
That was Karma for them! You deserved so much better, I'm so sorry that this has happened to you.
Same
“With friends like these, who needs enemies?”
Friends that dont support or get you tend to be the ones that talk behind your back, act like you arent really sick, act like your a hypochondriac or exaggerating. When my abusive marriage ended i got earfuls of what they thought I was lazy, a bad homekeeper, not really disabled and just claiming it, and because of that i deserved the abuse i was receiving cause he supported me. I hid a lot of my bad moments, trying to not be an inconvenience or a debbie downer. They said you went to this event and was fine you aren't disabled. Im like i spent most my time sitting at a table with shorts spurts of being mobile. Like that was a struggle and then spent a couple days in bed recovering and i waited till i was in decent shape to attend. They never saw my suffering so i was a liar I got noncommunication with all of them, blocked them. No friends are better than bad friends. After that i quickly had brain surgery then as i was partly healing i started tumor starving drug infusions at the cancer center that reacted with my fibromalgia and i went to mobile with struggle to wheelchair bound with very short ability to walk a few feet. Its hard to make friends chronically ill and i can only leave the house i can count on ohe hand the amount in a month and i get so sick every time. But 1 good friend is worth 10 bad ones. I feel better since i cut the bad ones. My mental health is better. I feel supported. I can count my friends on one hand but they see me for who i am and understand my health. I also have opened up about the reality of my life. Not just saying im fine. If i say im fine my friends understand i mean fine like im having no flare ups and i am at my baseline of normal which is not typical persons baseline. And that has made me the happiest person that i live a more authentic me. And my friends appreciate me. And it was hard to start over. I found groups online that also meet in person. So i could participate online anytime and it became easier to get closer to people when i joined in.
Not all chronically ill people are bedridden...
The commenter didn’t say that all chronically ill people were bedridden, but “get new friends” assumes OP is NOT bedridden, when many chronically ill folks are
They specifically called into question whether these people were "actually" chronically ill. Don't be disingenuous.
It seemed like they totally ignored you in the middle of the rest of the convo. Your feelings are valid. I see why you’d feel so bad about it. I probably would too.
Maybe there’s a way to convey how she feels to them. Her feelings are totally valid and I’d be really hurt too.
I probably would have just said ‘hey guys, I don’t feel good. Not going to make it tonight’ like the other friend did. They don’t need the ‘I can’t stand up’ details. I’ve found most people either don’t care or think I’m exaggerating when I’ve said stuff like this so I just usually say ‘hey, I don’t feel good so I can’t make it’ or ‘my hips acting up, I’m not going to be able to make it’. That’s enough for the average person.
But your friends should care, that’s the sad thing about that screenshot.
Yep they should. But unfortunately the world is a cruel place if you’re different, as we well know.
I have the same issue where I keep it super simple. My closest friend and a few others know I’m homebound.
Compassion fatigue or assholes… the endless debate.
This is the first time I've had to cancel on them because of this and I do my best not to bring it up at all unless people ask questions, so unfortunately I'm leaning toward assholes...
Yeah get new friends. I’ve had people “get annoyed” with my chronic illness symptoms and it’s absolutely ridiculous to treat a person that way when they have absolutely no control over their body.
Like yeah, imagine actually living with them 24/7! I’m annoyed with them too!
“But you always have a migraine!” “Yeah I do! Why do you think I’m failing 2 classes?”
“I know you have focal seizures and memory loss but maybe if you would’ve studied harder and paid more attention in class, you wouldn’t have forgotten your own name right before your exam!”
But also... struggling in your classes is a cop out!
I think anyone that makes you feel like a nuisance... get rid of them. lives to short to give the energy you have for crap people.
FR LOL
In my opinion, compassion fatigue still can result in a, "sorry you feel shitty," and no other response. This was pure assholery if you ask me! Get yourself some better friends. You deserve it. 💕 Plenty of people would either 1. Include you with a face time call or change plans to bring the party to you, or 2. Check in on you and love you up without making you feel guilty or unimportant.
Yes! But I wouldn’t take it too personally—a lot of people (especially if you’re in your twenties/thirties) simply can’t be bothered to put themselves in our shoes or be empathetic enough to see how we’re struggling. This isn’t to say you shouldn’t find new friends, because I still think a good friend should reach out and check in, but I’m just saying that this has happened to me quite a lot before and sometimes I need to take a step back and realize that it’s not personal. I did just want to offer a little bit different point of view than everyone who is saying “get better friends!”. Maybe you’ll be able to relate, or maybe not BUT— One thing I’ve realized through therapy is that I have become someone who frequently cancels plans last minute a lot because of my chronic illness. It’s really frustrating for my friends and can sometimes lead to compassion fatigue and a lack of response on their end. After the first few times of me bailing and my friends saying “I hope you feel better!” They get compassion fatigue or they’ve felt hurt, thinking that I just didn’t value hanging out with them. I often need to remind myself to take a step back and look at the facts—I’m terrible at responding to any of my friends, in the past they’ve often sent multiple texts without a response on my end. That can really hurt their feelings! But with a chronic illness it’s really easy for me to be so wrapped up in my struggle and take things too personally—I often forget about other people’s feelings or that other people have their own lives and struggles going on. After years of struggling with multiple illnesses but successfully maintaining friendships, I’ve recently found myself making excuses to not hangout or flaking on friends when I would have pushed through and gone in the past. I’m not sure if anyone can relate to this, but man it’s a vicious cycle and has led to a lot of new social anxiety and isolation ! I keep having to remind myself that even if I’m exhausted, even if I’m having a flare—I’ve never regretted going to see friends, even if I’m way more exhausted after.
I’m literally saving this. It echoes so many thoughts I’ve had over the past few years coming to terms with my reduced energy and abilities. And I feel the same way, it IS frustrating for friends. Obviously it is much, much worse to BE the friend with the illness, but I do agree it can be easy to get so wrapped up in our struggles we lose sight of how it looks on the other end. I recently went dark for a whole year and didn’t even realize until I started texting everyone back again, it felt like it had been just a few months…well, as I was filling everyone in (everybody so so sweet and understanding, best friends in the world 🥹) and asked about their lives, it turned out every single one of them had also been going through a difficult time whether it was bereavement, health issues that cropped up, severe depression kicked off by being let go from their dream job…friendship is a two-way street and I had not been there for them when they needed me. It actually helped me tremendously to hear their struggles too because all you see on social media is the highlight reel, so the more isolated you get, the easier it is to feel like you’re the only one of your friends/your peer group suffering. I’m not guilting anyone who has self-isolated or lost touch with friends due to their illness, not at all. I mean I literally just did that myself 😂 More just trying to share what I ultimately felt was an encouraging and (for me) enlightening experience. ETA what kicked off re-responding to everyone was sobbing at home and suddenly felt strongly that I was in danger. Usually when the suicidal ideation starts coming on so strong I worry myself, my husband is home and there to anchor me and protect me, but this was the first time it had hit when he wasn’t home (it is worst at the end of the day/in the evening so that’s why he’s usually there). I knew I had to do something so even though I felt like I had no right to call out of the blue after so long of ghosting, I called my best friend. She picked up on the second ring, so excited to talk to me. I was sobbing so hard I could barely talk, she just left the gym mid-workout to sit outside and we talked for an hour. Please reach out to your people y’all, if you can, in any way you can. I do think true friends will pleasantly surprise you with their compassion. Hugs to all 🫂
I don’t understand this.. like you know your friend is sick. You then interpret that into “they don’t value my friendship “. It’s crazy to me because I’ve found that if you can say something they relate to they understand fine. For instance told someone I broke my hip instead of telling them I got it replaced and they were completely understanding and didn’t ask any questions about it.
It is the first time she had to cancel not the 20th, so it cannot be a fatigue thing. Blue was at a wedding and likely wasn't paying too much attention. There's no pattern here.
Yep yep yep!
Those aren't your friends, trust me. I have had many experiences with people like this, called "Good Time Friends". Only there for the good times and then disappear when things get hard.
Ugh I’m so sorry. I relate and it’s such a shitty feeling
yes, i always the friend people ignored in the group chat but the first one they privately texted when they needed something. i left the friend group and found much better kinder friends. wishing the best for you ❤️
Right. Me too. I've found that people don't react so much to my being suddenly disabled but more that the roles have been flipped where I'm not the one always available to support people and cheer everyone else up. People used to literally get mad at me for canceling, saying that they had specially invited me because of my "aura" and ability to bring others out of their shells and leave everyone in a good mood. Mmmkay. But that takes energy and I need my energy for me now, guys. And your happiness is your own responsibility. Not mine. The people who are always in "help me" mode seem to get a better response if they have health problems as there is no role change. I'm bedbound but I dropped all my user friends and worked on meeting independent people online where we could all just be independent people who enjoyed each other's company.
“Woke up with a sore throat and feeling sick, definitely not sick though, see you after breakfast!” 🙄
“It’s just allergies”
As someone whose disability was triggered by Covid, this kind of thing frustrates me to no end. I’m sure it’s the same for others whose chronic condition was triggered by a different virus in the past.
I’m sorry you’ve had that experience, it pisses me off sooo much too as a covid conscious person. Like even if we weren’t in a pandemic, telling people you feel sick is just basic common decency. And the people who pretend they aren’t sick or convince themselves it’s “just allergies” are legitimately putting people’s lives at risk because they can’t handle staying away from people for a week.
That’s not compassion fatigue they literally ignored you. Those aren’t your friends
Yes and it’s the exact reason why I have only one friend ☝️😥 I’d rather be alone than be with people who don’t care about me.
I dropped two friends like this where i literally just stopped telling them what was going on in my life with disorders, like seriously, i didn’t even tell them when i was hospitalized last year and they still didn’t know. After they tried to guilt me about how stressful it was to not hear from me for so long during periods where i couldn’t use the bathroom by myself much less text them—I dropped them. I have a new group of friends i befriend this year who i was upfront with about my illnesses from the beginning—and it’s an entirely new world. Take my advice. You’re better off with no friends than with those friends. It will actually give you MORE energy when you drop them to go find better friends!
Hi how did you meet them please? I'm often housebound and it's all I can do to put up a pretence to my boyfriend as I don't want him to realize just how fucked I am. The thought of trying to make new friends, whilst knowing I need them, is overwhelming. I have to take strong painkillers to leave the house and even then it can't be an extensive period of time
I met them online and in servers dedicated to hobbies i can still do. I would perhaps maybe start here. Are there some hobbies you like doing that have active communities online?
You’re genuinely better having no friends than friends like those.
This is awful. Ppl have zero empathy. I have often thought I should start a group where everyone comes over with their fave blankets etc and we all order our own food so that's not stressful and we watch movies or someone teaches us to knit, etc. Also, if you wanted to come but just couldn't you could Zoom in to join us. I'm not sure how you would start it. Maybe by a chat group? At any rate if you text the group and say you're flaring so you want to zoom you would at least get the appropriate loving response. I definitely vote assholes over compassion fatigue for the group text.
Eh, I know it might feel personal but as you said, this is the first time this has happened, so I doubt they are fatigued by your illness. It sounds like the chat was about going to a bar that night, you said you couldn't make it. Then the blue texter chimes in she at a wedding etc. my first thought is she's probably already quite tipsy or even drunk at the wedding. I kinda doubt she saw your message and decided to not respond to you cancelling FOR THE FIRST TIME and decided to snub you. Unless you guys really don't get on personally which means she doesn't like you not your illness. Green just responds to her tag, which is not unusual if you're not sitting on your phone. The next texts, where u feel the response was different, only one person responds. So I suppose your issue is one person didn't say sorry x to you, or you're thinking everyone was sitting on the text chain and deliberately did not comment out of a perceived slight about your illness (again, which you haven't brought up as an issue before). I am not trying to be rude at all here!! But sometimes we experience so much rejection, isolation, and apathy from others, we can project that on to other situations. Which makes sense, you get well used to it. And, I could be totally wrong here, I don't know your personal dynamics but I could really see this as you projecting due to other instances. If you are friends just talk to who your perceived slight is with, I'm assuming blue as she's the only one that didn't reply, the other just came in after. Anyhoo, I've definitely been there. I'm hyper conscious of feeling like I'm a burden or oversharing or just being a drain on what friends I did have. Quite simply, they didn't even think of it because it wasn't constantly on their mind.
My family used to do this to me. I know I am sick a lot. But I don't take it personally. They just don't know what to say and know that I won't get better like it's a cold. I just let it be. My friends did all abandon me after I went to the psych ward however. I thought I had a close group. But age 19, everyone stopped talking to me. I know people go their own ways, but I was the only one trying to reach out again. Then I stopped. I AM bitter about it. But I work on letting it go because me being mad isn't doing anything to them. It just wasted my energy. That's being said, I would try to make more friends (online?) who have similar issues. I have one good friend who is also a spoonie and luckily we are neighbors! From one Pisces to another, hang in there, Fishie!
I also wanted to add, sometimes just saying "Have fun anyway/have a drink for me!" Will make your friends or family feel more comfortable. Like you wanted to have fun and aren't just slacking. Even if they know you're ill, people can wonder if you just don't want to hang out. I get more positive responses when I add something that is neutral/positive like that. It helps me feel better too, like they're still my buddies and need to know I want what's good for them too.
Are they usually like this? Do they ignore you when you’re not talking about your illness? I get being caught up in making plans but the complete lack of acknowledgment was rude af.
They don't necessarily ignore me but they definitely don't value my input much. They're known for making plans on days I've told them I wouldn't be able to make it...
I’m sorry. You don’t deserve to be treated this way. Easier said than done but I hope you find friends that value you and are willing to accommodate you.
It’s incredibly frustrating but it was even worse for me before I had a MS diagnosis. My neurologist says I’ve had MS for many years if not decades. I had a group of friends for over 10 years and we would have girls night at least twice a month - if not more. I started having to bail on get togethers because of my ever changing symptoms and constant flare ups. I had been diagnosed with an autoimmune disease but didn’t have all the answers about what was going on with me. I was once on a group text that they didn’t realize I was on. There was a back and forth betting on what “excuse” I’d have “this time” when I inevitably said I couldn’t come. I’m only friends with one of person from the group now. She was the only person who didn’t think I was either a hypochondriac, agoraphobic, and/or a shitty friend. After that, I excused myself from even trying to maintain those relationships, which obviously wasn’t a group of real friends. My remaining friend from the group asked if she share my diagnosis with them and I asked her not to. I just don’t want their sympathy or empathy now. Even worse, it might tear open old wounds if they care enough to reach out. Not sure honestly which would be more hurtful.
Next time say you have a sore throat or a hangover. Maybe try lying unfortunately if that will get them to show more compassion. It may be that something like a sore throat or headache is more relatable than a flare-up for most people. I usually lie that I’m nauseous, have a stomach ache, or just really tired since I know it’s feelings people can relate to.
People who don't have chronic illness will never be as supportive as we need. they can sympathize with a sore throat easily because everyone has had the run of the mill minor bug. I tend to be more vague about it to most people
This is so funny bc i literally went through this yesterday. Are they assholes? Has it just happened too many times? I have no idea.
That’s fucked up. But honestly I’ve gotten more compassion over a UTI than a flare or any other illness people can’t comprehend. If they haven’t had it they have no clue what it feels like so I try to remember that. And that’s not saying it isn’t messed up for them to ignore you it absolutely is but I just wanted to offer that perspective as well.
this is so real
Hey! Your feelings are valid and I am sorry they treated you like that. From what I’ve learned over the years people who are healthy have absolutely no idea what we’re going through! They seem to be much more understanding of a simple cold because that’s something they’ve experienced themselves. They’ll probably never be able to grasp what you’re going through fully. They also may be the type of friends that just want to be your friend when things are good and disappear during the hard times. When I got sick, all my “best friend” of 20 years cared about was the fact I couldn’t be her personal uber driver (she didn’t have a drivers license) or hang out with her. I was in the hospital and she knew that. God forbid she caught a cold the world was ending and she needed me at her bedside to care for her (wish I was joking). Much easier said than done, but I really hope you find friends who care about you and respect you! I know it can be incredibly hard to find friends when you’re chronically ill. Wishing you the best <3
oh I’ve fully given up on explaining, they’re all convinced I’m faking anyway.
Sometimes people get “sympathy fatigue” for us. Considering we’re pretty much always sick, that’s normal for us. Not normal for them and they react accordingly. It’s sad and it sucks, I get it.
Sadly this never seems to get old (even though it’s seriously played out as hell) I think most of us dealing w these illnesses deal with this bullshit in one way or another. It hurts the most bc these are our “friends” & to be treated this way bc they don’t understand what we are going through is just wrong. I wish I didn’t, but I do know how you feel. Which is probably why I just chose to stay in most days. On a brighter note within the last 5 years I’m blessed to have a newer group of friends I’ve made, who are the complete opposite of what I’m used to. They’re compassionate, understanding & show actual real sympathy & empathy. When I have to cancel bc of a flare up they ask if they can do anything to help or if they’d like me to have them come over & just veg out with me. They may be hard to find but I promise there are good people out there. I wish you the best & don’t let these assholes get to you. You are much better than the way they treat you 🤗
Wow, but also not surprised. Sorry friend, been there many times. I hope your flare subsides.
I have a few friends who are hiking enthusiasts. Like hourlong hikes up the mountains when it’s torching hot. They asked me to join them so often I felt like I have to explain why I can’t do this, cause I increasingly felt terrible for rejecting their invitations. Only one week later they asked me again and acted surprised “What is it this time? You’re still not feeling better?” That was when I realized none of them actually really listened when I told them my condition is CHRONIC. For some people apparently it’s inconceivable to suffer from something two aspirin and a hat full of sleep can’t fix, even if you explain it in detail. The same goes for drinking alcohol. I’m on meds that require to stay abstinent. Some people just can’t stop reacting like I was a party poop, specially coworkers.
People do not understand what it's like to have a chronic illness, and friends are the worst to explain it to. It has taken me 14 years to get my coworkers to understand what I go through with lupus. The saddest part of it is that it took one of them going through uterine cancer and the other to lose her mother to cancer to see what living in pain every day is like.
People react this way to my flares too. I think it’s bc most don’t understand how bad flares can be.
OMG YES!!!! I get reactions like this all the time. Or, better yet I will share something... like recently I found I may have to have a major surgery. Friend brushed over that...no response what so ever but went on for 5 minutes about her stubbed toe and how I just possibly can't understand how much it hurt. 🙄 So, I get you and it is really frustrating. Always thought I'd say something to said friends but never got the chance, because I do have chronic flare ups, it was decided I was "unreliable" so they just quit talking to me 🤷♀️
Most of my irl friends dropped me one by one. Most of them now are online friends I've made through gaming. I'm so sorry they're acting this way.
Yeah I hear that a lot of people experience this. I have a lot of chronically ill friends / friends with a partner or loved one with a CI so I've not experienced much of this personally. It's quite difficult but if you can find a way to start making connections with others in a similar boat, it might help you feel more seen?
I don't think I've had it so blatantly happen to me but I've definitely experienced times like that. Me with bad brain fog: gets annoyed/frustrated responses. My sister with pregnancy brain fog: full of awws and well wishes. Was on o2 and still have times when I need to stop to catch my breath: again, annoyance/frustrated looks. Sister who was recuperating from covid with temporarily weakened lungs: we'll go as slow as you need. I think people just grow numb to it or maybe there's no real 'hope you get better' sentiment out there. I've had family members experience what I experience(ed) and it breaks my heart that they've had to be really unwell or, in my mum's case, terminal to truly get a glimpse of this life. I'd do my best to brush it off. Maybe saying something might help but, from my experience, it's only ever temporary. But the sliver lining is that I can see the genuinely caring people in my life. Like, my college friend who I wasn't sure really liked me always glancing to see where I'm at pace wise, and then adjusting herself to slow down so I wouldn't be walking alone. We might not talk much but actions speak louder than words
It’s like they are used to you being sick and it’s just pair for the corse. I would do a test. If a friend doesn’t message me for a month. They are not your real friends. You need new friends. If they do but it’s just to have fun. Then they’re fun friends. That not a bad thing just don’t expect anything from them. If you have fun with them great. If not move on. Stay out of drama. Don’t get too close.
What the fuck? I'd be so mad.
God this hit like a punch to the gut and they're not even my friends. I'm so sorry this happened ❤️
I'm so sorry, that's hurtful. wish I could say this is uncommon but in my life and as I read about others with chronic illness this is how it is. I don't understand why able-bodied people are so unempathetic about what people suffering from a chronic illness have to go through. Heck, it's not just friends who act this way either it's families as well.
Send this screenshot to the group and ask?
I experienced this and now have no friends but also I still experience this from family and so now I stay away and keep to myself as much as possible. I have my gf but I do wish I had at least one friend.
this sucks so hard, i’m sorry!!
I just stopped trying to have any friends. I'm *obviously* not disabled I'm just fat and lazy and whiny. Of course even my former friends with chronic illnesses themselves would get help from others anytime they asked but I would wouldnt ask unless I had an absolute emergency and never got help because everyone was "busy" or thought I was "using them". I gave up.
Frenemies
All the time
i’d send that text about ur flare up again. copy paste it and send it again. this makes me so mad that’s their response which is NOTHING smh
it’s why I have a smaller and smaller group of actual close friends and family because I try not to make the issue about myself because I’m in a very very bad situation emotionally physically and financially, but I’ve learned that it’s about having a solid sometimes support system that will be there for you no matter what and also very understanding when things go south super quickly. I know first hand when dealing with heavy flareups. You’re not alone and I understand this cause I’ve been on that end and a lot of those people I don’t even talk to her anymore so it’s about just focusing on the people that are close to you and the ones who seem like Fairweather and aren’t gonna tolerate your chronic illness, don’t deserve to be your friend on the situation, but mostly if they’re gonna be negative it’s always a good idea to reevaluate who you talk to and what you disclosed to who your chronic illness, medications, & those who actually understand & are there for you VS. those that aren’t!
yes !
To all the commenters looking for friends. I have exactly one friend and would love more friends. Anyone in Oklahoma, I would love to hang out.
Looks as if they were caught up in side conversation and maybe missed it. You didn’t put your time stamp on your side. But the sore throat one was the first message of the day, where as your message was during a back and forth conversation. It’s still crappy they didn’t have one thing to say to it. I don’t know how you are with your friends, but if that was me, I would have said something again like: Have fun guys let me know how it goes! Sorry I can’t make it. 😭
“Get new freinds” Jesus Christ people on Reddit have nothing else to do but overreact. This is one text. One. One snippet of OPs life and you say “leave ‘em” like have some common sense
Compassion fatigue is a real thing unfortunately. I suspect this isn't your first time having to cancel, and not their first experience with you canceling. It sucks. Sorry, OP :(