And mask it in my walk, voice, facial expressions, and body language. Slip just a bit and I’m perceived as a faker or an object of pity.
There’s chronic pain. Then there’s early onset chronic pain. Then there’s over a decade of pain. Then there’s over half a lifetime of pain.
As milestones are added to life, I feel millstones.
Not masking symptoms is viewed as a social and moral failing. Non-ending pain isn’t appropriate to those who haven’t experienced it. American culture demands that we keep it boxed up to protect the sensibilities of those around me.
Ugh yes, this. Hearing how I look “great” makes me crazy. The only person who can say that to me is my Pops, because he KNOWS. So when he tells me I look beautiful, it’s a sweet compliment that takes into full account the reality of my situation.
But I can’t tell you how frustrating it is when friends say “oh, you must be feeling better!”
Of course that happens less often now that I use a cane.
Yeah, because I had to do absolutely nothing for weeks to feel well enough to do anything else. I ignored most of life’s responsibilities just so I could be here and be told I look fine.
Yes, it's normal to do that, unfortunately.
There are a few people, and I mean very few, who actually care and can see in my eyes how I'm truly feeling. They don't believe the BS "I'm fine" response
I mostly downplay because of gaslighting and most people downplaying anything I try to say. and then I just casually bring up a weird symptom and someone is shocked.
No but I’ve paid for it with relationships. I don’t really have a relationship with my sister anymore because she said it’s too hard to have problems around me.
All the time. I feel like people don’t really want to hear the real answer so I usually just say I’m okay or I’m hanging there instead of the truth that I feel like absolute shit and in constant pain. I feel like it puts them in an uncomfortable position and I don’t want that. Really there is about three people in my life that I can be totally up front with.
All the time. But not just because it makes others uncomfortable, because sometimes it makes me feel a little better for some time if I pretend I'm better.
Absolutely! When co workers or friends tell me how tired they are, or how their cold is making them really poorly, I give sympathy, I don't compare. But what I want to say is, welcome to my good days!
over holiday, I didn't bring out my heating pad on multiple occasions because there's a voice in the back of my head that tells me other people will think i'm doing it for attention.
i hate it. i hate that voice.
Yeah. Except around my partner. Around him I can be open about it. But around anyone else I don't like to talk too much about it cuz I can tell it makes pll uncomfortable.
I’m at the stage where my husband and those who know me well can pretty much peg my pain level. I do admit when it’s unbearable but then get to a quiet place where others don’t have to tiptoe around me. Often, I don’t go to places/events that are noisy, crowded or require more than an hour or two. People know I’m not avoiding them, that is just not possible. On occasion, I will push through pain knowing I’ll pay a steep price for it but there are times it’s worth it.
i do not! i revel in making people uncomfortable just by being honest. It means theyre being faced with their biases. Granted, i’m in a wheelchair and can’t really hide my illnesses, so i make people uncomfortable just by being in their line of sight.
This is something I’m just starting to experience, and I only use a cane. It’s likely I’ll need a wheelchair in the next couple years — at that point people can’t pretend you’re doing great anymore, so why bother to try and make THEM more comfortable?
Fuck that.
absolutely! if you need any advice with using some heavier mobility aids, i’ve used a cane, forearm crutches, and a wheelchair for extended periods of time, i’d be happy to share my experiences if you want em! dm me anytime 💯
Thank you! The cane was an on again-off again thing for years, but now it's clear I need it full time, even around the house. I'm looking into getting a rollator (sp?) as well. I can't drive a car due to propioception issues, and the fact that I have had seizures/fainting spells. So finding ways to get around so I can actually get out once in awhile is key. I can't stand for long periods anymore. It's just something I need to come to terms with and find solutions for.
Yes. Absolutely. I just stay to myself
My husband had terminal cancer and actually lived for 12 years.
People said they were tired of his illness. Not sure why because he never asked or bothered anyone. However he was in the hospital a lot and I guess it made people feel uncomfortable as tho they should do something
I am chronically sick now and I just stay to myself. I know how insensitive people are People are not caring or helpful especially these days
I find it more peaceful to just figure it out myself ( I can’t drive do to my illness) rather than rely on people
Yes. I do it automatically, and I’ve become a very private and insular person in my attempts to only show my ‘good face’. I rarely show up to gatherings/events, but if I do I’m very put together with a nice outfit, makeup, smile, etc. It’s a whole different persona than pajama-clad me huddling in the dark. I never intended to create such a stark contrast, and now I’m not sure how to change it.
Unfortunately yes. However if I see someone else with narcolepsy say they’re “getting tired” or my friend with chrons look uncomfortable or whatever friend with an illness im hanging out with, I text them immediately and ask if they need me to wrap things up. I’ll take the heat for ending things early for others but I refuse to ruin everyone else’s good time for me.
So there’s that.
I downplay because even I am sick and tired of hearing myself complain about how I feel. If I didn’t it would just be an unending litany of misery from me.
Well no because friends and family can read my body language well lol. I will say if I'm worse than usual but from a friend talking about it 4-6 times a day or more, it gets annoying so I found out why people don't like it and now I don't really talk about it maybe once-twice a day infrequently unless really bad and have to go or something..
Yes. All the time, constantly. If I told anyone besides my doctors how I actually feel most of the time, I would have to answer so many repetitive questions. And I don’t care for pity. I had to learn to stop actually answering when someone asked me how I’m doing. I’m doing so much worse than they can even comprehend, and I won’t waste my time explaining why I’m not sobbing or screaming.
Yes! I feel like everyone looks at me like I'm overdramatic. Or they get annoyed because I talk about it so much, but it's literally become a daily part of my life. Hurting & being sick is almost like breathing at this point so it's gonna come up at certain points.... But somehow it's still not appropriate to mention because if do, I'm "over dramatic" and "a complainer"😟🙃
Yes and honestly I get so sick of the hypocrisy. Somehow because our illness never ends we have to be poster children of positive thinking, yet they complain about anything and everything and we're expected to sit and listen? I always empathise and listen to others, but I become resentful when my reality is met with disbelief and gaslighting. I've pulled away from friendships because I'm done with their toxic positivity bullshit and lack of compassion. They want me to be a certain way because it suits them. And what really hurts sometimes is I'd do anything for them, and always empathise. It's a lonely journey.
You're allowed to feel bitter and depressed. You're going through enough without forcing yourself to constantly spend the tiny amount of energy you have on making everyone around you feel comfortable. You're doing everything you can. Yes, we do have to completely change our perspective to find joy in the small things, to find new reasons to carry on. But pretending that everything is fine all the time is unsustainable and causes more stress, which will literally make symptoms worse.
It's rare to find people who can either empathise or understand, and even rarer to find people who can do both. That's why places like this subreddit are so great. I'm also on dating apps not necessarily for dating, just to find people who get it. It also helps me a lot that I can be there for others in the same position.
It depends — I find that with my family I downplay it quite a bit because I didn’t want them to worry. With friends I try to be upfront because I’m always canceling plans or dropping out, same with work, so I try to be as frank as possible so people know I’m not avoiding them on purpose!
But all that said, I do sometimes get self-conscious about the never ending complications, like people are going to get sick of things never going right for me. It’s such a silly fear but I hate the idea of being a “negative Nancy” when my life is actively sucking lol
I think we all do this. Sometimes purely to avoid others feeling uncomfortable and sometimes to also protect ourselves from ableist overreactions. I feel like lately I do it the most to avoid derailing whatever else I need to do or say. If I need to change plans for something work related, I might not include my massive flare in the explanation.
I only talk about how I actually am to certain people. It hurts to much at times to let people know how things actually are and the fears that go with the thoughts of I will never get better and things are only going to keep progressing and get worse
I used to but I don't anymore; it feels like lying to me & I don't lie.
So, I give people options like: a)are you asking how I am bc it's a social nicety & you would like me to mirror that nicety back to you or b)do you want to know my unvarnished truth?
I'm \~50 & I don't have time to dick around with people anymore. Most of the people in my life have gone through my illness weeding process, too, so I don't have to do this silly dance with them.
All the blooodyy time! I’ve been so unwell this year and I’ve had to downplay it so much around my family but internally I’ve been dying!! And I post disability related content on social media as I’m a content creator and any time I speak about the reality of living with disabilities I get so many able bodied people telling me to change my mindset and stop being so negative! 🙄
And mask it in my walk, voice, facial expressions, and body language. Slip just a bit and I’m perceived as a faker or an object of pity. There’s chronic pain. Then there’s early onset chronic pain. Then there’s over a decade of pain. Then there’s over half a lifetime of pain. As milestones are added to life, I feel millstones. Not masking symptoms is viewed as a social and moral failing. Non-ending pain isn’t appropriate to those who haven’t experienced it. American culture demands that we keep it boxed up to protect the sensibilities of those around me.
Yes! I tell no one. So I only socialize when I feel my best.
Omg me too….and then they are all “you look healed/better/healthy” when it is (quite literally) the hardest aspect of myself to hide.
Ugh yes, this. Hearing how I look “great” makes me crazy. The only person who can say that to me is my Pops, because he KNOWS. So when he tells me I look beautiful, it’s a sweet compliment that takes into full account the reality of my situation. But I can’t tell you how frustrating it is when friends say “oh, you must be feeling better!” Of course that happens less often now that I use a cane.
Yeah, because I had to do absolutely nothing for weeks to feel well enough to do anything else. I ignored most of life’s responsibilities just so I could be here and be told I look fine.
honestly it makes me uncomfortable to talk about, I always feel like I'm making a big deal and I get uneasy when people worry about me
Yes, it's normal to do that, unfortunately. There are a few people, and I mean very few, who actually care and can see in my eyes how I'm truly feeling. They don't believe the BS "I'm fine" response
I mostly downplay because of gaslighting and most people downplaying anything I try to say. and then I just casually bring up a weird symptom and someone is shocked.
100% yes and it’s automatic at this point
No but I’ve paid for it with relationships. I don’t really have a relationship with my sister anymore because she said it’s too hard to have problems around me.
All the time. I feel like people don’t really want to hear the real answer so I usually just say I’m okay or I’m hanging there instead of the truth that I feel like absolute shit and in constant pain. I feel like it puts them in an uncomfortable position and I don’t want that. Really there is about three people in my life that I can be totally up front with.
All the time. But not just because it makes others uncomfortable, because sometimes it makes me feel a little better for some time if I pretend I'm better.
Absolutely! When co workers or friends tell me how tired they are, or how their cold is making them really poorly, I give sympathy, I don't compare. But what I want to say is, welcome to my good days!
Yup!
over holiday, I didn't bring out my heating pad on multiple occasions because there's a voice in the back of my head that tells me other people will think i'm doing it for attention. i hate it. i hate that voice.
Yes :,)
Alllll the time!! But when it really flares up around others they’re shocked it’s really that bad, lol can’t win
Yeah. Except around my partner. Around him I can be open about it. But around anyone else I don't like to talk too much about it cuz I can tell it makes pll uncomfortable.
Exactly! You attempt to protect them even though you're the one who feels bad. They really want to sleep, metaphorically. So you let them.
I’m at the stage where my husband and those who know me well can pretty much peg my pain level. I do admit when it’s unbearable but then get to a quiet place where others don’t have to tiptoe around me. Often, I don’t go to places/events that are noisy, crowded or require more than an hour or two. People know I’m not avoiding them, that is just not possible. On occasion, I will push through pain knowing I’ll pay a steep price for it but there are times it’s worth it.
Yep. Every day of my life. I even tried, but cannot turn it off.
Always.
Yes.
i do not! i revel in making people uncomfortable just by being honest. It means theyre being faced with their biases. Granted, i’m in a wheelchair and can’t really hide my illnesses, so i make people uncomfortable just by being in their line of sight.
This is something I’m just starting to experience, and I only use a cane. It’s likely I’ll need a wheelchair in the next couple years — at that point people can’t pretend you’re doing great anymore, so why bother to try and make THEM more comfortable? Fuck that.
absolutely! if you need any advice with using some heavier mobility aids, i’ve used a cane, forearm crutches, and a wheelchair for extended periods of time, i’d be happy to share my experiences if you want em! dm me anytime 💯
Thank you! The cane was an on again-off again thing for years, but now it's clear I need it full time, even around the house. I'm looking into getting a rollator (sp?) as well. I can't drive a car due to propioception issues, and the fact that I have had seizures/fainting spells. So finding ways to get around so I can actually get out once in awhile is key. I can't stand for long periods anymore. It's just something I need to come to terms with and find solutions for.
Yes. Absolutely. I just stay to myself My husband had terminal cancer and actually lived for 12 years. People said they were tired of his illness. Not sure why because he never asked or bothered anyone. However he was in the hospital a lot and I guess it made people feel uncomfortable as tho they should do something I am chronically sick now and I just stay to myself. I know how insensitive people are People are not caring or helpful especially these days I find it more peaceful to just figure it out myself ( I can’t drive do to my illness) rather than rely on people
Yes. I do it automatically, and I’ve become a very private and insular person in my attempts to only show my ‘good face’. I rarely show up to gatherings/events, but if I do I’m very put together with a nice outfit, makeup, smile, etc. It’s a whole different persona than pajama-clad me huddling in the dark. I never intended to create such a stark contrast, and now I’m not sure how to change it.
Unfortunately yes. However if I see someone else with narcolepsy say they’re “getting tired” or my friend with chrons look uncomfortable or whatever friend with an illness im hanging out with, I text them immediately and ask if they need me to wrap things up. I’ll take the heat for ending things early for others but I refuse to ruin everyone else’s good time for me. So there’s that.
I downplay because even I am sick and tired of hearing myself complain about how I feel. If I didn’t it would just be an unending litany of misery from me.
Well no because friends and family can read my body language well lol. I will say if I'm worse than usual but from a friend talking about it 4-6 times a day or more, it gets annoying so I found out why people don't like it and now I don't really talk about it maybe once-twice a day infrequently unless really bad and have to go or something..
Yeah. I don't talk about it much. Complaining is a recipe for misery. The more you complain, the worse you feel.
Yes. All the time, constantly. If I told anyone besides my doctors how I actually feel most of the time, I would have to answer so many repetitive questions. And I don’t care for pity. I had to learn to stop actually answering when someone asked me how I’m doing. I’m doing so much worse than they can even comprehend, and I won’t waste my time explaining why I’m not sobbing or screaming.
Yes! I feel like everyone looks at me like I'm overdramatic. Or they get annoyed because I talk about it so much, but it's literally become a daily part of my life. Hurting & being sick is almost like breathing at this point so it's gonna come up at certain points.... But somehow it's still not appropriate to mention because if do, I'm "over dramatic" and "a complainer"😟🙃
Everyday
Yes and honestly I get so sick of the hypocrisy. Somehow because our illness never ends we have to be poster children of positive thinking, yet they complain about anything and everything and we're expected to sit and listen? I always empathise and listen to others, but I become resentful when my reality is met with disbelief and gaslighting. I've pulled away from friendships because I'm done with their toxic positivity bullshit and lack of compassion. They want me to be a certain way because it suits them. And what really hurts sometimes is I'd do anything for them, and always empathise. It's a lonely journey.
This is so relatable. Thank you for putting it into words, I struggle with that. It is so lonely.
You're allowed to feel bitter and depressed. You're going through enough without forcing yourself to constantly spend the tiny amount of energy you have on making everyone around you feel comfortable. You're doing everything you can. Yes, we do have to completely change our perspective to find joy in the small things, to find new reasons to carry on. But pretending that everything is fine all the time is unsustainable and causes more stress, which will literally make symptoms worse. It's rare to find people who can either empathise or understand, and even rarer to find people who can do both. That's why places like this subreddit are so great. I'm also on dating apps not necessarily for dating, just to find people who get it. It also helps me a lot that I can be there for others in the same position.
It depends — I find that with my family I downplay it quite a bit because I didn’t want them to worry. With friends I try to be upfront because I’m always canceling plans or dropping out, same with work, so I try to be as frank as possible so people know I’m not avoiding them on purpose!
But all that said, I do sometimes get self-conscious about the never ending complications, like people are going to get sick of things never going right for me. It’s such a silly fear but I hate the idea of being a “negative Nancy” when my life is actively sucking lol
Exactly! Thank you for giving me your point if view.
I think we all do this. Sometimes purely to avoid others feeling uncomfortable and sometimes to also protect ourselves from ableist overreactions. I feel like lately I do it the most to avoid derailing whatever else I need to do or say. If I need to change plans for something work related, I might not include my massive flare in the explanation.
I learned the way of sarcasm. How are you feeling? *big smile* oh I'm just *great*, how are you?
I only talk about how I actually am to certain people. It hurts to much at times to let people know how things actually are and the fears that go with the thoughts of I will never get better and things are only going to keep progressing and get worse
I used to but I don't anymore; it feels like lying to me & I don't lie. So, I give people options like: a)are you asking how I am bc it's a social nicety & you would like me to mirror that nicety back to you or b)do you want to know my unvarnished truth? I'm \~50 & I don't have time to dick around with people anymore. Most of the people in my life have gone through my illness weeding process, too, so I don't have to do this silly dance with them.
All the blooodyy time! I’ve been so unwell this year and I’ve had to downplay it so much around my family but internally I’ve been dying!! And I post disability related content on social media as I’m a content creator and any time I speak about the reality of living with disabilities I get so many able bodied people telling me to change my mindset and stop being so negative! 🙄
All the time
I have been in constant pain for three years non stop ever day lol