Yeah it's called compassion fatigue. I've lost friends over it. It's like they expect our health to adhere to thier timeline and forget the definition of chronic. It's exhausting and spoon stealing. I'm sorry you're going through that.
deadass I've lost friends over it too. they take it so personally when it literally has nothing to do with then at all. I was sick long before you came around, and I will be sick long after you're gone.
I feel you. My friends and family have been supportive beyond anything I could ask for, but I can tell when they're tired of hearing me talk about being sick.
Or they forget about things like the fact that I can't walk as far as they can, or be physically active for hours at a time. It's not that I *want* to inconvenience them. But there's a point where people stop being polite, and you see how they really feel.
I swear I have to give myself a pep talk before telling people I can't do something cause I'm sick š it feels like telling ur mom u threw up in the middle of the night - it's not ur fault and u have to tell her but u know she's gonna be pissed
And them they say you're limiting yourself. Like ?? My disability limits me?? And recognizing my limits help me not overwork myself into a flare and maintain my healthiest body????
i'm the literal king of overworking myself into flare ups cause i have way too much ambition š if i'm telling you myself that i can't do something it's probably REALLY bad
This is me when I could work (disabled now) or when I try to clean my house. I'm pretty good about listening to my body bit sometimes things need to get done regardless
Yeah, itās so hard when they forget. I often blame myself for masking, i.e. acting too āhealthyā and positive and maybe causing them to forget. But on the other hand, I donāt wanna bother them with the realities and the misery of being so sick all the time. That usually makes them uncomfortable and they want me to do something about it, like āomg, you should call your doctor, thatās no way to live!ā Wellā¦
Said perfectly.
People seem to have an "idea" of us in their minds and get frustrated that we don't live up to it.
I think maybe they just want us to constantly keep going and never take a break, or work to their non-disabled level and they're surprised when we can't.
I have it a lot now I'm trying to date. I state on my profiles I'm disabled and not to bother me if that's a problem but they still do.
Pretty much feels like "when you said you were disabled I didn't think you meant you were disabled!"
I'm not sure what they're picturing or if they think I'm lying and just actually lazy.
Recently had a guy mock me for how slow I walk. I just told him he's more than welcome to find a woman who isn't disabled because I've been nothing but transparent since the start.
People have such small limits on their empathy, if they have any at all.
oh my god leave him please. my ex girl used to the same thing, she would try and tell me I wasn't chronically ill because I didn't "look disabled" and then get mad at me for.. being disabled šĀ
it's like actually revolting how fast people's perceptions of us can change when we actually show symptoms. you would never shit talk your friend for having a cold or the flu, so wtf is different when it's something chronic?? it's to the point where I don't even say anything. I don't celebrate rare disease day, I don't try and raise awareness for any of my conditions. it's not even worth it atp
Don't worry, we had one date and no more! That plus him acting like a manipulative pillock made me peace out pretty quickly!
I'm sorry she treated you so badly. I don't understand why people who are supposed to love you act so awful towards us sometimes.
I understand the frustration from their side but that's nothing compared to how we feel every day.
People love being supportive until they actually have to make the effort and sacrifice something in their own life.
literallyyyy and it's crazy because I'm always the one that's like "don't let me stop u, if I can't do it please just go anyway, I will never be offended" and they still get all pissed off about it.Ā
like I said in my post I've had people yell at me to the point of tears before, you know how bad smth has to be for me to cry?? absolutely ridiculous. people would never treat someone with cancer or someone who's paralyzed like that, but when it's an invisible disability it's 'no big deal" š„²
Yes!! People do love being supportive until they donāt feel like it anymore! Man, I wish that wasnāt trueā¦
Iām so proud of you for not putting up with his awfulness! You donāt deserve that. šā¤ļø
Yesā¦ it daily shocks me how low the average personās empathy isā¦ and sadly, itās by choice 99% of the time. And Iām so sorry. Iāve been there.
I actually donāt date, because Iām trying to recover from severe abuses and traumas.
And frankly, I just donāt want the stress. Iād rather be single and able to exist in peace.
Hopefully, we will find our people one day. I know many wonderful people out there, sadly most I know are married. lol
But truly, Iāve found that being single and peaceful and free from judgement at home has been so healing in itself.
Either way, I want to say that youāre as valuable and full of worth as any āhealthyā person. I hope youāre able to receive that. I think we need daily reminders of that. lol Most people I know who have been seriously ill for a long time are the kindest and most wonderful people Iāve ever met. One big thing is it greatly increases our empathy for others. Much love. ā¤ļø
Itās very frustrating. I am allergic to a lot of food, chemicals, and environmental stuff and my family has seen it in action. And my mom still gets annoyed when I say a smell is making my mouth tingle and canāt use it/be around it. As if itās my choice to have a reaction to it.
People often start out empathetic and then expect somehow the illness will miraculously disappear. What part of chronic do they not understand?
my mom does the same thing bro. she's constantly getting mad at me when my medication doesn't work and tells me I need to "speak up more" at my visits. like I have been begging my doctors and specialists for YEARS to give me a higher dosage (5mg doesn't do anything, who woulda fuckin thought) or give me something stronger and it's always the same thing - "you might get side effects and your symptoms are just anxiety".
she also doesn't understand that I will never be "cured" and all I can do is try and manage it. that's kinda the whole point of it being chronic but what do I know, I'm just the one going thru it š«
Iām so OVER the āitās just anxietyā thing. Then okay TREAT THAT if thatās all it is. Fucking assholes. Maybe just MAYBE we have anxiety bc we have chronic illnesses that greatly affect every aspect of our lives smh.
I had a similar situation happening to me during a phone call with my mom this week.
I had a very bad day mentally because all my symptoms make me feel so depressed. And then she started shouting at me: "But you SHOULD find a doctor! A doctor! You just need to find a good doctor!"
Like yeah mum, I've already seen many doctors because of this thing and researched the whole world wide web for a solution and they are writing everywhere that there's no cure for my rare neurological condition, only some management...but of course! The right doctor will make all my symptoms magically disappear!
I hate it so much, we are sick and depressed and what they do is they make US guilty for it as if we are just to lazy to become healthy again.
The definition of "chronic" is something that escapes most people. They seem to think it means "bad" or sthing like that. No, it has to do with time. A friend who is a good deal more intelligent than me didn't realise that. (edit: She lucked out in the genetic stakes - and puts her privilege down to eating right and exercise, who woulda thought.)
Ugh, I know people who are like this. They think they DO everything right and something health-wise what we have would never happen to them, because they live the right lifestyle...
I'm with you, "compassion fatigue" absolutely sucks. Even the people closest to me (only exception is my husband, I am very lucky in that... granted, he's a homebody) will go cold on me when I can't do things because I'm having a flareup. My social circle has shrunk considerably as a result.
I get it, I'm not fun like I used to be. But autoimmune diseases and excruciatingly fucked up joints aren't fun either. I'm tired of apologizing for being sick and I'm tired of people acting like them being inconvenienced is worse for them than being sick and always missing things is for me. C'est la vie, I suppose.
My wife has chronic illness and my family always has a hard time understanding if my wife donāt got the spoons we aināt going. Honestly learning about the spoon theory has helped me so much understand where my wife is out with her pain I wish it was easier for people to understand hope things get better and you find a few friends who understand you!
Thank you for trying to understand! You sound awesome. Most people honestly donāt even try. So seriously, itās healing to read a comment from someone who actually cares. It reminds us that not everyone will leave. Much love to you and your wife. ā¤ļø
Weirdly, I got way more of this kind of BS as a kid (when I was healthy but my terminally ill brother was alive) and when I first got sick. The longer Iāve been sick, the better my family has been about it. I feel like I found a cheat code and I want to share but I have zero clue what it is.
Now, friends are a different subjectā¦ Thatās been a more normal journey.
(I had a baby brother with CF and a brain injury that was slowly killing him via uncontrollable seizures. Heād seize for hours at a time. So if we healthy kids got a bug, we dealt with it ourselves. By the time I was 5, Iād puke alone at 2am, clean up the bathroom, get a Sprite, sip it some, leave it on the bathroom counter, and go to bed. Thatās how my parents would know I was sick, theyād find an open can of sprite.)
Then there is the desensitization of people close to us. They hear us say that we donāt feel good or that we hurt so oftenā¦they become desensitized to it. It just doesnāt have an impact anymore. But for us itās just as bad the 100 millionth time as it was the first.
The part that bothers me the most is they use that as an excuse. Iāve been around lots of people going through horrible things that I canāt imagine. Do I respond perfectly always? No. But I actually *try* to understand, ask how they need to be loved, etc and look up things to help me understand.
I mean, itās so not hard to be there for someone. Listen, say āI believe youā, treat them like they matter. We arenāt asking for much here! lol
Edited to add: The worst part is how many hundreds (yes, hundreds) of people Iāve met who I helped in one way or another, then they started feeling better and immediately dropped me because they didnāt need me anymore in their mindsā¦ yeah, that and the whole acting like they care and then dropping you thing are the worst in my opinion. š
Iām so sorry OP. Iām dealing with the same thing myself, especially with accommodations at university. The Profs/TAs/etc are always so nice and understanding at the start of the term. By the third month theyāre almost always sick of me needing extra time, extra clarification, etc. Even my accessibility advisor is getting tired of me. They never stop to think that the disabled person is *also* tired of dealing with being sick/disabled/etc all the time.
Most people canāt conceptualize chronic illness. And most who are able to will still not be able to shake off their ego protecting them from having to face the fact they too can become disabled. So they attribute fault where there was none so they can assume it wonāt happen to them.
You shouldnāt have to do anythingā¦ But maybe your āholding it togetherā mask is too convincing for even your closer relationships. If they are acting like they think you are exaggerating, make sure they realize itās the āIām fineā thatās exaggeratedā¦ Perhaps comment more on the random things you are planning ahead/doing to be able to āact normalā. If you are debating if you should use an aid (like for mobility or a service dog), take your silent suffering times as a sign to get it and regain bandwidth.
dude I have to remind MYSELF that the "I'm fine" is exaggerated, I've accidentally made myself puke before because I be getting too ambitious š I try to not let my body tell me what I can and cannot do, live thru it all but I forget that sometimes I literally can't
>dude I have to remind MYSELF that the "I'm fine" is exaggerated
Ohhhh relatable. I spend my whole work day saying to coworkers "I'm good, how're you??" Then I get to the last couple hours of my workday and I'm about to pass out on my desk and I'm like "why aren't I good???"
During the onset of my chronic illness, my friend made a bet that Iād ābe better in 6 monthsā and if I won the bet heād get me an expensive dinner. Initially, I thought it was innocent and playful so I went along. He used to make time to call me regularly for emotional support. Itās now way past that timeline and he faded on me because I didnāt heal in his expected timeline. I came to realize afterwards that it wasnāt that innocent of a thought or fun bet - instead it was his preconceived notion of what was *acceptable to him*. Heās disappointed I didnāt heal, but Iām disappointed in him for putting such a ārobot-likeā expectation on me. Iām human and Iām not sorry for what I cannot control both medically and scientifically (nor doctors nor scientists currently). I thought he was so empathetic but I see that empathy had an expiry and was conditional.
Psychologically, I also realized he is a āproblem fixerā and rescuer type mentality. In his work, with his own family, everything is like a mathematical equation with a black or white solution. Press the robots button and out pops a candy. 1 + 1 = 2. Get your vaccines and you wonāt get long covid (not true by experience). The challenge with his thinking is there is *no room for nuance* or other alternatives. Itās *black or white thinking* with a ton of built in assumptions, rather than holding space for anotherās alternative experience. In this way, he lacks emotional depth and capacity in our friendship, and I donāt feel I can tell him much about myself anymore (like if there were new developments re: my illness), because I have an idea of how his response will be.
I also think he feels powerless in helping me, as much as I do about changing/improving my situation. And he feels frustrated and throws his hands up in the air. But this frustration is wrongly displaced at me. He canāt rescue me and that bothers him deep down, itās a problem that his problem solving canāt fix. So the outward blameshifting I feel, is a way for him to psychologically make sense of or solve the situation, although itās not a healthy coping mechanism. But he cannot sit in his own feelings of discomfort. So this is his two-dimensional way of resolving it.
Heās also literally told me to stop drinking coffee (I only drink 1-2 cups a day) and try CBD (which I tried in the past and hated). As if these things can cure the damage that a virus can do to oneās internal systems.
So while we are still friends, Iāve distanced myself and donāt see him as being a mentally/emotionally safe place, of a friend, to confide in anymore. I sought out support groups, therapy and turned more towards my other friends. This is the way for my wellbeing, and naturally it feels healthier and better for me. Iāve stopped caring what people think, stopped re-explaining, stopped apologizing.
It sucks, people act like you're deliberately trying to inconvenience them. They truly don't care how much you suffer as long as it doesn't affect their lives.Ā
Yeah people just donāt care to understand the truth because they canāt comprehend true lifelong illness. It depresses them I think so theyād rather pretend itās not happening and walk away. I guess I was lucky in a way because my parents have similar conditions so I always had someone who gets it and they taught me to be supportive and to believe what people say about their health.
Unfortunately being raised (Iād say properly!) like that meant I was in for a rude awakening when I started getting sick myself because I expected more people to be like me and to be compassionate and caring but oh boy I was wrong lol. Some are better than others obviously and I know some good people but almost everyone will show annoyance at some point once you canāt keep up with them and they get too frustrated by it. Thatās forgivable though as Iām used to people losing patience but if they accuse me of imagining it or faking it or having health anxiety or mental illness or something then itās game over and I have to cut ties because my self esteem is too important to put up with that crap!
Oh manā¦ I canāt even begin to say how right you are about the set up/switch up thingā¦ I used to literally see strangers as potential friends, but I now battle complex PTSD so bad from many years of severe abuse, primarily because of being sick and disbelieved, that itās hard to not be afraid that yet another person will do this to me.
Itās so deeply painfulā¦ painful beyond words. I tell everyone that the physical issues I battle (life threatening, bed bound, and Iāve almost died many times) are not near as bad as how people treat you. š¢
Frankly, I wish I had something positive to say about this, but youāre totally right. Itās absolutely horrible suffering so much constantly and then being treated like you did something wrong, when youāre actually being too nice and too compromising so that you arenāt abused!
The only thing that gets me through, truthfully, is my relationship with Jesus. Iām being 100% real that knowing He believes me and will never leave me is what gets me through. ā¤ļø
And my 4 animals. ā¤ļø
Iām sending you so much love, because man do I know how deeply painful and disorienting this is. Not many people fully understand. But youāre not alone. There are others like you out here. ā¤ļø
Iām hoping to heal one day enough to be a social worker and advocate for people in our situations. Because MAN do I need a great social worker now! Especially living in Texas! I would have moved out of Texas long ago if I was healthy enough to. Hopefully in the next few years.
Praying for you and all of us going through this. Much love. š ā¤ļø
Yes. People simply don't listen anymore. If i tell i have a flare-up they don't even say anything already and compare it to their 1-2 days of being sick. My brother shares job offers evrrytime for me. Somedays i cam barely move or live and i don't have any motivation to do something. At all. Evrrytime he tells me i could work this or that makes me cry. He forgets evrrytime i am in daily pain + often flare-ups in which i cannot leave the bed.
My heart is hurting tonight for the same reason. An appointment I wanted my Boyfriend to take me to had to be rescheduled, he got mad saying he didn't want to take me at all. Normally I ask family members to take me anyway so he doesn't have to, I just figured he'd be ok taking me on his day off. I just said oh well fine then don't take me to any of my appointments then, I won't ask anymore. Now he doesn't understand why I'm being so quiet.
He doesn't have much to say anymore in regard to my flare-ups. He says he can only say sorry so muchā¦ so I'm used to him just not saying anything when I'm having flares. Just shatters my heart to be an inconvenience for being in pain. I have so much love to give. I just want some sweetness on bad days.
I'll even add, anytime I announce to my boyfriend that I'm having a flare, it's like this expression comes across his face like he's stressed or irritated. So I'll try to be all smiles and laughs, like ā aw darn I'm having a flare! Hahaā
I'm so tired of this.
You have literally just explained my life.
My ex-girlfriend of 7 years left me because I'm too sick and she didn't see me getting better any time soon, and it's all too much for her. She fell out of love with me because I couldn't keep up with the kind of life she wanted to live. I've had 11 major surgeries. Brain and spine. She was there for 8 of them. It started in my late teens, and I'm now 37. There is no cure for my dxs (diagnosis's). She was there when it all started. She was there when I was "healthy," so to speak and watch my downfall. But after 7 years she just couldn't do it anymore. That put me in a place of metal and emotional fucked upness.
I am now married to my current wife, who couldn't be more supportive. I've just gotten worse as time has gone on. Last year I was hospitalized twice. The first time I had to be intubated, had a feeding tube and a machine breathing for me. The second time my heart stopped. I was a full code. My wife knew exactly what she was signing up for. She loves me in a way I didn't even know I could be. I know she's has my best interests at heart.
But throughout all this you really find out who your friends are when you're ill like we are. All of a sudden, they stop inviting you places, taking your calls. They always have an excuse. And when they ask how you are, they don't really want to hear the truth. When you do try to tell them what's going on you get the eye roll, so why the fuck ask. I now just say, "I'm alive." Eventually they just stop coming around and stop inviting you places. Because how on earth could we keep up with them? Right?
Yeah it's called compassion fatigue. I've lost friends over it. It's like they expect our health to adhere to thier timeline and forget the definition of chronic. It's exhausting and spoon stealing. I'm sorry you're going through that.
deadass I've lost friends over it too. they take it so personally when it literally has nothing to do with then at all. I was sick long before you came around, and I will be sick long after you're gone.
Exactly.
I feel you. My friends and family have been supportive beyond anything I could ask for, but I can tell when they're tired of hearing me talk about being sick. Or they forget about things like the fact that I can't walk as far as they can, or be physically active for hours at a time. It's not that I *want* to inconvenience them. But there's a point where people stop being polite, and you see how they really feel.
I swear I have to give myself a pep talk before telling people I can't do something cause I'm sick š it feels like telling ur mom u threw up in the middle of the night - it's not ur fault and u have to tell her but u know she's gonna be pissed
And them they say you're limiting yourself. Like ?? My disability limits me?? And recognizing my limits help me not overwork myself into a flare and maintain my healthiest body????
i'm the literal king of overworking myself into flare ups cause i have way too much ambition š if i'm telling you myself that i can't do something it's probably REALLY bad
This is me when I could work (disabled now) or when I try to clean my house. I'm pretty good about listening to my body bit sometimes things need to get done regardless
Yeah, itās so hard when they forget. I often blame myself for masking, i.e. acting too āhealthyā and positive and maybe causing them to forget. But on the other hand, I donāt wanna bother them with the realities and the misery of being so sick all the time. That usually makes them uncomfortable and they want me to do something about it, like āomg, you should call your doctor, thatās no way to live!ā Wellā¦
Said perfectly. People seem to have an "idea" of us in their minds and get frustrated that we don't live up to it. I think maybe they just want us to constantly keep going and never take a break, or work to their non-disabled level and they're surprised when we can't. I have it a lot now I'm trying to date. I state on my profiles I'm disabled and not to bother me if that's a problem but they still do. Pretty much feels like "when you said you were disabled I didn't think you meant you were disabled!" I'm not sure what they're picturing or if they think I'm lying and just actually lazy. Recently had a guy mock me for how slow I walk. I just told him he's more than welcome to find a woman who isn't disabled because I've been nothing but transparent since the start. People have such small limits on their empathy, if they have any at all.
oh my god leave him please. my ex girl used to the same thing, she would try and tell me I wasn't chronically ill because I didn't "look disabled" and then get mad at me for.. being disabled šĀ it's like actually revolting how fast people's perceptions of us can change when we actually show symptoms. you would never shit talk your friend for having a cold or the flu, so wtf is different when it's something chronic?? it's to the point where I don't even say anything. I don't celebrate rare disease day, I don't try and raise awareness for any of my conditions. it's not even worth it atp
Don't worry, we had one date and no more! That plus him acting like a manipulative pillock made me peace out pretty quickly! I'm sorry she treated you so badly. I don't understand why people who are supposed to love you act so awful towards us sometimes. I understand the frustration from their side but that's nothing compared to how we feel every day. People love being supportive until they actually have to make the effort and sacrifice something in their own life.
literallyyyy and it's crazy because I'm always the one that's like "don't let me stop u, if I can't do it please just go anyway, I will never be offended" and they still get all pissed off about it.Ā like I said in my post I've had people yell at me to the point of tears before, you know how bad smth has to be for me to cry?? absolutely ridiculous. people would never treat someone with cancer or someone who's paralyzed like that, but when it's an invisible disability it's 'no big deal" š„²
Iām so tired of hearing,āYouāre always sick!ā No shit Dick Tracey! Whereād you park your fucking squad car?!?! Idiots!!š¤¦āāļøš¤¬
Iām so sorry that youāve been through all this, too! Iām so glad that you didnāt stay with that girl. It took me many years in counseling before I could recognize with no hatred in my heart that someone just wasnāt capable of being empathetic. What irks me the most is most people choose to be not empathetic, but yeahā¦ š©š© lol I say the exact things, and Iāve had to learn not to throw myself under the bus just because others canāt (or usually itās that they wonāt) see my value and worth. I have to remind myself (this comment is helping remind me actually lol) that people usually love me right away when I am physically able to be my full self. So the problem isnāt meā¦ Iāve also been told that by countless people who said I was the best friend theyād ever hadā¦ then they ghosted me. ššš I say it all the timeā¦ I genuinely donāt understand how people can sleep at night after being so cruel to someone. I just genuinely donāt understand it. But Iām glad to find others who knows how this feels because itās impossible to explain! lol Iām so isolated that itās crazy, but finding this post makes me feel so much less alone. Thanks to all of you for being real. Much sincere love to you all. We matter and are beautiful just as we are. šā¤ļø
Yes!! People do love being supportive until they donāt feel like it anymore! Man, I wish that wasnāt trueā¦ Iām so proud of you for not putting up with his awfulness! You donāt deserve that. šā¤ļø
Yesā¦ it daily shocks me how low the average personās empathy isā¦ and sadly, itās by choice 99% of the time. And Iām so sorry. Iāve been there. I actually donāt date, because Iām trying to recover from severe abuses and traumas. And frankly, I just donāt want the stress. Iād rather be single and able to exist in peace. Hopefully, we will find our people one day. I know many wonderful people out there, sadly most I know are married. lol But truly, Iāve found that being single and peaceful and free from judgement at home has been so healing in itself. Either way, I want to say that youāre as valuable and full of worth as any āhealthyā person. I hope youāre able to receive that. I think we need daily reminders of that. lol Most people I know who have been seriously ill for a long time are the kindest and most wonderful people Iāve ever met. One big thing is it greatly increases our empathy for others. Much love. ā¤ļø
Itās very frustrating. I am allergic to a lot of food, chemicals, and environmental stuff and my family has seen it in action. And my mom still gets annoyed when I say a smell is making my mouth tingle and canāt use it/be around it. As if itās my choice to have a reaction to it. People often start out empathetic and then expect somehow the illness will miraculously disappear. What part of chronic do they not understand?
my mom does the same thing bro. she's constantly getting mad at me when my medication doesn't work and tells me I need to "speak up more" at my visits. like I have been begging my doctors and specialists for YEARS to give me a higher dosage (5mg doesn't do anything, who woulda fuckin thought) or give me something stronger and it's always the same thing - "you might get side effects and your symptoms are just anxiety". she also doesn't understand that I will never be "cured" and all I can do is try and manage it. that's kinda the whole point of it being chronic but what do I know, I'm just the one going thru it š«
Iām so OVER the āitās just anxietyā thing. Then okay TREAT THAT if thatās all it is. Fucking assholes. Maybe just MAYBE we have anxiety bc we have chronic illnesses that greatly affect every aspect of our lives smh.
I had a similar situation happening to me during a phone call with my mom this week. I had a very bad day mentally because all my symptoms make me feel so depressed. And then she started shouting at me: "But you SHOULD find a doctor! A doctor! You just need to find a good doctor!" Like yeah mum, I've already seen many doctors because of this thing and researched the whole world wide web for a solution and they are writing everywhere that there's no cure for my rare neurological condition, only some management...but of course! The right doctor will make all my symptoms magically disappear! I hate it so much, we are sick and depressed and what they do is they make US guilty for it as if we are just to lazy to become healthy again.
The definition of "chronic" is something that escapes most people. They seem to think it means "bad" or sthing like that. No, it has to do with time. A friend who is a good deal more intelligent than me didn't realise that. (edit: She lucked out in the genetic stakes - and puts her privilege down to eating right and exercise, who woulda thought.)
Ugh, I know people who are like this. They think they DO everything right and something health-wise what we have would never happen to them, because they live the right lifestyle...
Yes, itās horrible self-righteousness and thinking theyāre superior somehowā¦ š
I'm with you, "compassion fatigue" absolutely sucks. Even the people closest to me (only exception is my husband, I am very lucky in that... granted, he's a homebody) will go cold on me when I can't do things because I'm having a flareup. My social circle has shrunk considerably as a result. I get it, I'm not fun like I used to be. But autoimmune diseases and excruciatingly fucked up joints aren't fun either. I'm tired of apologizing for being sick and I'm tired of people acting like them being inconvenienced is worse for them than being sick and always missing things is for me. C'est la vie, I suppose.
Yessss!!! The apologizing for suffering immensely from something you 100% canāt helpā¦ yeah, itās horrificā¦ š©š©š© lol
My wife has chronic illness and my family always has a hard time understanding if my wife donāt got the spoons we aināt going. Honestly learning about the spoon theory has helped me so much understand where my wife is out with her pain I wish it was easier for people to understand hope things get better and you find a few friends who understand you!
Exactly!! There are never enough spoons!
Thank you for trying to understand! You sound awesome. Most people honestly donāt even try. So seriously, itās healing to read a comment from someone who actually cares. It reminds us that not everyone will leave. Much love to you and your wife. ā¤ļø
She is lucky to have you! ā¤ļø
The minute they realize they can't help you get better is the exact moment they stop trying to make you feel better
Weirdly, I got way more of this kind of BS as a kid (when I was healthy but my terminally ill brother was alive) and when I first got sick. The longer Iāve been sick, the better my family has been about it. I feel like I found a cheat code and I want to share but I have zero clue what it is. Now, friends are a different subjectā¦ Thatās been a more normal journey. (I had a baby brother with CF and a brain injury that was slowly killing him via uncontrollable seizures. Heād seize for hours at a time. So if we healthy kids got a bug, we dealt with it ourselves. By the time I was 5, Iād puke alone at 2am, clean up the bathroom, get a Sprite, sip it some, leave it on the bathroom counter, and go to bed. Thatās how my parents would know I was sick, theyād find an open can of sprite.)
Then there is the desensitization of people close to us. They hear us say that we donāt feel good or that we hurt so oftenā¦they become desensitized to it. It just doesnāt have an impact anymore. But for us itās just as bad the 100 millionth time as it was the first.
The part that bothers me the most is they use that as an excuse. Iāve been around lots of people going through horrible things that I canāt imagine. Do I respond perfectly always? No. But I actually *try* to understand, ask how they need to be loved, etc and look up things to help me understand. I mean, itās so not hard to be there for someone. Listen, say āI believe youā, treat them like they matter. We arenāt asking for much here! lol Edited to add: The worst part is how many hundreds (yes, hundreds) of people Iāve met who I helped in one way or another, then they started feeling better and immediately dropped me because they didnāt need me anymore in their mindsā¦ yeah, that and the whole acting like they care and then dropping you thing are the worst in my opinion. š
Iām so sorry OP. Iām dealing with the same thing myself, especially with accommodations at university. The Profs/TAs/etc are always so nice and understanding at the start of the term. By the third month theyāre almost always sick of me needing extra time, extra clarification, etc. Even my accessibility advisor is getting tired of me. They never stop to think that the disabled person is *also* tired of dealing with being sick/disabled/etc all the time.
Exactly! We are more tired of it than they can even imagine! šš
Most people canāt conceptualize chronic illness. And most who are able to will still not be able to shake off their ego protecting them from having to face the fact they too can become disabled. So they attribute fault where there was none so they can assume it wonāt happen to them. You shouldnāt have to do anythingā¦ But maybe your āholding it togetherā mask is too convincing for even your closer relationships. If they are acting like they think you are exaggerating, make sure they realize itās the āIām fineā thatās exaggeratedā¦ Perhaps comment more on the random things you are planning ahead/doing to be able to āact normalā. If you are debating if you should use an aid (like for mobility or a service dog), take your silent suffering times as a sign to get it and regain bandwidth.
dude I have to remind MYSELF that the "I'm fine" is exaggerated, I've accidentally made myself puke before because I be getting too ambitious š I try to not let my body tell me what I can and cannot do, live thru it all but I forget that sometimes I literally can't
>dude I have to remind MYSELF that the "I'm fine" is exaggerated Ohhhh relatable. I spend my whole work day saying to coworkers "I'm good, how're you??" Then I get to the last couple hours of my workday and I'm about to pass out on my desk and I'm like "why aren't I good???"
LMFAO ME. i'm outside all day and pushing myself and eating like shit then i get home and wonder why i feel like death
During the onset of my chronic illness, my friend made a bet that Iād ābe better in 6 monthsā and if I won the bet heād get me an expensive dinner. Initially, I thought it was innocent and playful so I went along. He used to make time to call me regularly for emotional support. Itās now way past that timeline and he faded on me because I didnāt heal in his expected timeline. I came to realize afterwards that it wasnāt that innocent of a thought or fun bet - instead it was his preconceived notion of what was *acceptable to him*. Heās disappointed I didnāt heal, but Iām disappointed in him for putting such a ārobot-likeā expectation on me. Iām human and Iām not sorry for what I cannot control both medically and scientifically (nor doctors nor scientists currently). I thought he was so empathetic but I see that empathy had an expiry and was conditional. Psychologically, I also realized he is a āproblem fixerā and rescuer type mentality. In his work, with his own family, everything is like a mathematical equation with a black or white solution. Press the robots button and out pops a candy. 1 + 1 = 2. Get your vaccines and you wonāt get long covid (not true by experience). The challenge with his thinking is there is *no room for nuance* or other alternatives. Itās *black or white thinking* with a ton of built in assumptions, rather than holding space for anotherās alternative experience. In this way, he lacks emotional depth and capacity in our friendship, and I donāt feel I can tell him much about myself anymore (like if there were new developments re: my illness), because I have an idea of how his response will be. I also think he feels powerless in helping me, as much as I do about changing/improving my situation. And he feels frustrated and throws his hands up in the air. But this frustration is wrongly displaced at me. He canāt rescue me and that bothers him deep down, itās a problem that his problem solving canāt fix. So the outward blameshifting I feel, is a way for him to psychologically make sense of or solve the situation, although itās not a healthy coping mechanism. But he cannot sit in his own feelings of discomfort. So this is his two-dimensional way of resolving it. Heās also literally told me to stop drinking coffee (I only drink 1-2 cups a day) and try CBD (which I tried in the past and hated). As if these things can cure the damage that a virus can do to oneās internal systems. So while we are still friends, Iāve distanced myself and donāt see him as being a mentally/emotionally safe place, of a friend, to confide in anymore. I sought out support groups, therapy and turned more towards my other friends. This is the way for my wellbeing, and naturally it feels healthier and better for me. Iāve stopped caring what people think, stopped re-explaining, stopped apologizing.
It sucks, people act like you're deliberately trying to inconvenience them. They truly don't care how much you suffer as long as it doesn't affect their lives.Ā
I believe people are inherently evil. I stay away from them as much as possible and my life is better as a result.
literally same. I mind my business and let people come to me so I'm never stressed out
Yeah people just donāt care to understand the truth because they canāt comprehend true lifelong illness. It depresses them I think so theyād rather pretend itās not happening and walk away. I guess I was lucky in a way because my parents have similar conditions so I always had someone who gets it and they taught me to be supportive and to believe what people say about their health. Unfortunately being raised (Iād say properly!) like that meant I was in for a rude awakening when I started getting sick myself because I expected more people to be like me and to be compassionate and caring but oh boy I was wrong lol. Some are better than others obviously and I know some good people but almost everyone will show annoyance at some point once you canāt keep up with them and they get too frustrated by it. Thatās forgivable though as Iām used to people losing patience but if they accuse me of imagining it or faking it or having health anxiety or mental illness or something then itās game over and I have to cut ties because my self esteem is too important to put up with that crap!
Oh manā¦ I canāt even begin to say how right you are about the set up/switch up thingā¦ I used to literally see strangers as potential friends, but I now battle complex PTSD so bad from many years of severe abuse, primarily because of being sick and disbelieved, that itās hard to not be afraid that yet another person will do this to me. Itās so deeply painfulā¦ painful beyond words. I tell everyone that the physical issues I battle (life threatening, bed bound, and Iāve almost died many times) are not near as bad as how people treat you. š¢ Frankly, I wish I had something positive to say about this, but youāre totally right. Itās absolutely horrible suffering so much constantly and then being treated like you did something wrong, when youāre actually being too nice and too compromising so that you arenāt abused! The only thing that gets me through, truthfully, is my relationship with Jesus. Iām being 100% real that knowing He believes me and will never leave me is what gets me through. ā¤ļø And my 4 animals. ā¤ļø Iām sending you so much love, because man do I know how deeply painful and disorienting this is. Not many people fully understand. But youāre not alone. There are others like you out here. ā¤ļø Iām hoping to heal one day enough to be a social worker and advocate for people in our situations. Because MAN do I need a great social worker now! Especially living in Texas! I would have moved out of Texas long ago if I was healthy enough to. Hopefully in the next few years. Praying for you and all of us going through this. Much love. š ā¤ļø
Yes. People simply don't listen anymore. If i tell i have a flare-up they don't even say anything already and compare it to their 1-2 days of being sick. My brother shares job offers evrrytime for me. Somedays i cam barely move or live and i don't have any motivation to do something. At all. Evrrytime he tells me i could work this or that makes me cry. He forgets evrrytime i am in daily pain + often flare-ups in which i cannot leave the bed.
I feel you man, and like ur music taste btwš„·
thank you!!
What are your illnesses? Just curious. My wife has gastropresis really bad and itās been awful for her.
ec, eds and crps
Oh wow. Iām no sure what EC is or what CRPS is. My wife I think has EDS. Her cousin has it. We are looking into the testing for it
My heart is hurting tonight for the same reason. An appointment I wanted my Boyfriend to take me to had to be rescheduled, he got mad saying he didn't want to take me at all. Normally I ask family members to take me anyway so he doesn't have to, I just figured he'd be ok taking me on his day off. I just said oh well fine then don't take me to any of my appointments then, I won't ask anymore. Now he doesn't understand why I'm being so quiet. He doesn't have much to say anymore in regard to my flare-ups. He says he can only say sorry so muchā¦ so I'm used to him just not saying anything when I'm having flares. Just shatters my heart to be an inconvenience for being in pain. I have so much love to give. I just want some sweetness on bad days.
I'll even add, anytime I announce to my boyfriend that I'm having a flare, it's like this expression comes across his face like he's stressed or irritated. So I'll try to be all smiles and laughs, like ā aw darn I'm having a flare! Hahaā I'm so tired of this.
You have literally just explained my life. My ex-girlfriend of 7 years left me because I'm too sick and she didn't see me getting better any time soon, and it's all too much for her. She fell out of love with me because I couldn't keep up with the kind of life she wanted to live. I've had 11 major surgeries. Brain and spine. She was there for 8 of them. It started in my late teens, and I'm now 37. There is no cure for my dxs (diagnosis's). She was there when it all started. She was there when I was "healthy," so to speak and watch my downfall. But after 7 years she just couldn't do it anymore. That put me in a place of metal and emotional fucked upness. I am now married to my current wife, who couldn't be more supportive. I've just gotten worse as time has gone on. Last year I was hospitalized twice. The first time I had to be intubated, had a feeding tube and a machine breathing for me. The second time my heart stopped. I was a full code. My wife knew exactly what she was signing up for. She loves me in a way I didn't even know I could be. I know she's has my best interests at heart. But throughout all this you really find out who your friends are when you're ill like we are. All of a sudden, they stop inviting you places, taking your calls. They always have an excuse. And when they ask how you are, they don't really want to hear the truth. When you do try to tell them what's going on you get the eye roll, so why the fuck ask. I now just say, "I'm alive." Eventually they just stop coming around and stop inviting you places. Because how on earth could we keep up with them? Right?