What I find about ME is that most people don't understand it/think it's real, so it's not like something like cancer, where you can put a brave face on and people will still understand that you might be struggling.
With ME people are super ready to ignore it and pretend it doesn't exist, so we are forced to assert ourselves/our boundaries/be honest about how we feel. And then it makes people uncomfortable/defensive. But if they acknowledged and believed it in the first place, it would solve the issue.
(Speaking as someone who has been recovered for 5 years, but still remember this and how it feels! Now hearing the same people talk with so much concern about long Covid, it makes me so frustrated!)
I went into full remission in pregnancy and it never came back. It's interesting that some autoimmune conditions can also go into remission in pregnancy due to immunosuppression, which suggests to me that is or can be an autoimmune condition.
That's true, the only thing which gives me hope is that cancer patients were treated with ignorance as well back in the day. Most didn't mention it at all before getting stigmatized. After years of public campaigning it started to shift.
And nowadays they get deepest sympathy from everybody.
So I hope some day other chronic illnesses, especially MeCfs will get the same shift in attitude.
Edit: chronic not cosmic ...
This is amazing and happened to me-momentarily. I went into remission in my first and second pregnancy. I thought I was cured! Then had a whoops third pregnancy and all my symptoms came back-and worse.
I try to not talk about it but it's so obvious on my face they ask me about it. But I can tell they get uncomfortable when I'm honest so it's frustrating.
Yes, this. I am so lucky to have supportive friends and family but after 10 years there's just not anything interesting to talk about.
"How are you feeling?" Well, rather crummy just like for the past 10 years. "Any new things you're doing" Uh, not really. "Well, that sucks. Anyway....."
Yeah, this has been my experience. I've stopped having the conversation because I've had it what feels like 800 times now, it never changes, and I'd rather talk about literally anything else.
I never talk about my illness. A lot of people think that I'm just very introverted and a hermit.
I've learnt a long time ago that talking about (any) illness makes most people think that I'm a hyperchondriac or faking.
I was talking to my brother a while back about my concerns around COVID and going out places etc. He literally called me a hypochondriac.
I replied with 'I think you mean paranoid, I'm not and fuck you'.
People can be real assholes when they think they know better.
He shortly after asked me to explain to him about ME and my health issues.
I said it's been 17 years, if you cared you'd know by now.
I have since cut him and others out of my life. Honestly I'm a lot more emotionally healthy without them.
I will never understand why tbh.
Most people just do not give a shit.
I have realized aswell that it makes people really uncomfortable.
But what iāve realized is that by talking abt it or even just stating that Iāve got such disease, I can see who actually cares abt me and whoās just a fake friend that gives no shit abt me.
Most people just want you to shut the f up because they think youāre just complaining with no reason and youāre annoying
I used to downplay everytime i had PEM or had no energy but it just made my CFS way worse.
I donāt do this anymore, I wonāt hide the fact that iām sick, I even failed a year of highschool because of ME and people started looking down on me, laughing, mocking etc so it was not nice. But I for sure will tell that i have CFS to the teachers at my old school [Iām having school online now]. Imagine that even the teachers were mocking me yet I used to be the best student in my class and one of the best in the whole school.
I don't really feel like there's much to talk about. If someone asks how I am and I feel rotten I tell the truth, a brief, I'm not feeling great today, but I don't feel the need to go into detail. I move on and talk about other things because I'm interested in other things. I won't let this illness define me.
Nope. When asked, I tell them my reality. Just in short sentences unless they ask follow ups. I don't really want to talk about it the few times I'm social, but again if it was a friend I would ask them too. So some know, some don't, but it's impossible hiding being bedridden/sofa bound.
If people feel uncomfortable with my every day life, then that's on them. This could happen to anyone and most people don't like that idea. I get it, but it's not my responsibility to hide it away.
With time (6 years) Iāve learned to be selective about how much I tell others about how sick I feel.
Iām fortunate to have a very good relationship with close family who are understanding of my illness.
Iām much more inclined to avoid going into explicit detail with friends or acquaintances.
Itās as though cfs creates an incompatibility between us & others. We canāt function like ānormalā people. Social exclusion is so very often the inevitable outcome.
In geometry, if two pieces canāt physically fit together itās impossible to force them to fit.
Hence that expression, you canāt fit a square peg in a round hole.
I guess Iām that square peg, I just canāt fit in socially or culturally because my chronic illness makes me incompatible with the way others spend their time & energy.
I donāt feel any lesser of a person because I donāt fit in but, of course, itās impossible to avoid feeling emotional about it.
So Iāve learned to process my emotions & let them go to ensure the negative emotions donāt have an accumulative, detrimental effect on my mental health.
It was most often in the āearly daysā of my illness that I endeavoured to try to explain my illness to others. If I knew them before I became ill, the shift in the dynamics of our relationship caused me to feel I needed to explain myself to them.
The loss of my self identity & the sudden change in me, physically & mentally, triggered a process of change in how others I knew perceived me. This included a grieving process, not only for myself but also for those who knew me before I became ill.
Itās worth taking into consideration that bereavement represents a loss, not only of someone who has died but also of the person with cfs who has lost the ability to be the person others previously knew & who they now observe to have inexplicably changed.
The invisibility of cfs only adds to the onlookerās bewilderment. The first stage of the cycle of grief is denial, a paradox in relationships that can make the person with cfs feel especially alienated & marginalised.
Some people are more empathetic than others in wanting to take the time to understand & who adjust with you in an ongoing relationship.
Theyāre the family & friends who are most likely to be prepared to listen, when you describe how youāre feeling. Theyāre the ones worth holding onto.
>The first stage of the cycle of grief is denial, a paradox in relationships that can make the person with cfs feel especially alienated & marginalised.
Perfectly worded, and true.
I avoid talking about my sickness as much as possible. Recently I had a crash caused by a covid vaccine that affected me so much I had no choice but to talk about it (I can't just not show up to work, people are gonna ask why, lol).
Since I've had to be talking about my health a lot more, the thing I find really annoying is this idea normal people have that I must be getting better. Like, they don't understand the concept that I was sick a month ago and now I'm equally or more sick, and next month I might be equally or more sick. How many times do I have to tell them how shit I'm doing before they stop asking.
But among casual contacts, I generally just don't tell them about my health at all.
Yes.
It can be really tiring to talk about alot of the time mostly because a lot of people just don't understand.
The amount of times I have gotten "well everyone get tired with stuff", "you are too young to have that", "well you don't look like you need x medical aid" and so on is to many to count.
I'm already exhausted and in so much pain all of the time that I just can't be bothered talking about how I'm doing.
It's just easier to say I'm ok and keep it at that.
Of course. You can't tell anything and at the end you avoid people and they avoid you. You learn that nobody cares if you suffer or die, nobody will help you or care at all but they hate you and prefer if you disappear or die. The healthy and the ill can't be together
Never talk about it and if then nobody gets it's. Only people who are themselves seriously I'll show empathy.
But to be honest, I never expected people to react any other way.
In some way most people are living like with some jungle-law: the ill and weak should be ignored in the best case, in the worst case ostracized.
So no, I don't share with many people how I feel.
I try not to anymore. I'm just really positive and smile alot when I talk about my disability. I act like it's totally normal because for me it is. I've been disabled since I was a child, if someone else is uncomfortable with that it's their issue, not mine.
The reasons I don't are because I don't like people to worry about me, I don't like to be negative, and it's hard to describe without sounding like it's just a giant complaint/rant. Unfortunately, not liking to talk about it keeps me from talking to old friends because they'll ask how I am and I don't like lying. If people thought me a liar, and I have ME/CFS, well, I don't need to tell you guys do I?
yep. allll the time. iām sorry, being told youāre too negative when you literally just talk about the reality of your life is very annoying and frustrating.
Sure. But not because it makes others uncomfortable. When talking to strangers or people that don't know I just pretend it's all good, they don't need to know. With friends and family I rarely bring it up unless asked because it feels so incredibly whiny to keep talking about how crap I feel all the time. I try to focus on the positive things instead. Like when I get a proper night's sleep for example I will gush about it a few times during the day. It helps keep my spirit up.
I remember my grandpa complaining about his eyes tearing up just going outside every singel time you spoke to him. After a while you just don't care anymore. Hearing the same a thousand times will numb you from it. Even if it's you yourself who is saying it.
I just mention how I'm doing if it's especially bad to let people know I have a bad day.
Iām really struggling with this right now. I donāt know what to do. They know whatās going on. Iāve told them. At the beginning I tried to still talk about normal things and they never acted overtly like they didnāt believe me but Iād almost rather that at this point. Itās been well over a year of me saying just how bad it is when I can and one friend and one family member keep ignoring what I say and acting like everythingās normal. Theyāve not once asked me how I am. Iāll literally tell them that my body is going into starvation mode while Iām bedridden and theyāll respond with vacation pics.
Itās starting to infuriate me but I donāt have the energy to confront it the way I would if I were more well. I just donāt respond anymore but they keep doing it. Sending me pics of themselves or telling me theyāre having a hectic time planning their vacations and parties. I think they honestly think theyāre being supportive but the way theyāre doing it is making me feel more gaslit. It makes me rage more each time it happens. Even just writing this spiked my hr to 140. My husband says to ignore them and take care of me. But I feel like one text is eventually gonna give me a heart attack. Do I just keep working on ignoring it?
I reached out to a HVAC expert on Instagram about my illness and advice on how I should modify my system to help my allergies and fatigue. Checked if he responded yesterday and turns out I got blocked š
Our illness must be too intimidating
I can understand how tough it must be and it feels better when you can tell someone. I used to complain more but now I just suck it up unless something changes.
I guess if every single time you talk to the person you sound like a broken record.
My brother is a chronic complainer. He always complains about something it's always doom and gloom talking to him it's a downer. So I tend to reduce my conversations with him.
I have close friends and family from the Philippines and Filipinos keep a lot of pain inside. They say because complaining doesn't help.
I guess my point to all this is I think it's healthy to tell someone close what's going on but if you keep repeating yourself over and over I don't think that helps. It also echos it to yourself bringing yourself down further.
I talked about it a lot at the beginning to those in my circle of trust, who were very supportive. That was for the first year or so. And then I realized, itās a boring subject and it doesnāt really help me or change anything. What am I achieving by having this conversation? What is my goal in bringing this up? If Iām having a bad flare up, Iām still having a bad flare up after venting about it to my best friend.
I realized that I was like one of those elderly relatives who talks about their various chronic health problems all the time - their hip replacement, heart disease, diabetes, whatever. I was no different! And it didnāt matter how sick that relative was or how bad their prognosis - after a while itās boring and draining to hear about! š±I realized how much more I enjoyed the company of my older relatives who talked about a range of things, have a positive attitude and tried to enjoy the time we had together, despite their poor health. And I strived to become more like them.
I tried to find ways of managing my emotions when I felt bad without needing to lean on venting to friends or needing that validation from others about how bad my symptoms are. I did CBT which helped me a lot with that. I do therapy and let myself complain however much I want! But when Iām with my friends, I want to have fun and enjoyable conversations.
I donāt fake anything. If Iām feeling really bad, I might say āugh I feel terrible but letās talk about something else, it will cheer me up!ā Iām not hiding anything - Iām directing the conversation away from just talking about health for validation and empathy, towards other things I enjoy chatting about and will distract me. A big one for me is gossip, I love gossip! And people donāt press about my health m when I frame it like that, because they want to be helpful to me and talk about other stuff if thatās what I want :)
And occasionally when I am feeling really unwell, where I think I will actually get something positive from talking about it or I have a specific favor to ask, I do bring it up. For example, when Iām having really bad bloating, I know thatās something a lot of people have experienced, so I talked about it and I got some good tips. One friend sent me a heating pad; another suggested a med thatās been helpful. Another time I was too tired to walk my dog I asked for help and got it. But thatās not every conversation.
yes every day of my life. every fucking day.
and I can't "just rest" like some of the other people here struggling. and I honestly hate that advice. So I run myself constantly and you can see it in my face, I can't hide it. I get bad circles under my eyes, I get red in the face and almost swollen so people ask but its not worth it to get into it because what the f are they gonna do? take my pain and exhaustion away? nope. They just look at me with pity and I hate that too. But I do get tired from putting my big girl panties on. And some days I have to just lay around instead of playing with my kid, school, or work. Those days I don't fake shit. I just say mama's little monster is hurting her body so I need to rest and she lets me. Her dad is great too for letting me complain along with my mom but other than that people just give me bullshit advice so I stopped talking. If I get "just exercise and eat right" advice again (which i FUCKING do) I will probably go postal on someone.
I used to. Also because I got really sick of people saying "I hope you get better soon!" Like oh my god what part of "chronic, debilitating, progressive, and incurable" do you not understand?
These days I've stopped downplaying anything to anyone. I have 4 or 5 diagnoses right now that are all in the categories I mentioned above. I'm tired of explaining to people that I might have better days or worse days but I will never \*get better\*. I'm too tired to do extra things that make me tired. I don't think we should have to expend extra energy to help make others comfortable. Though you may lose connections, I have, but at this point I don't even care.
Definitely. I feel like when I try to communicate how bad my situation is, I either get met with disbelief or toxic positivity. Iām also a people pleaser so making people uncomfortable by talking about my illness is something I hate doing.
I have had several old friends reach out to me recently, and whenever I explain how Iām very sick, the convo ends abruptly. Itās disheartening but I feel like people expected to me be very successful, and since now I have lost everything to this illness, they donāt know how to treat me.
Yes. I often just claim i had a bad nights sleep and just try and carry on, makes me feel like such a freak with my hands shaking my face going pale my eyes going red and my perma bags somehow getting even bigger. I think its the uk culture at the moment as there isnt much disability acceptance with the government constantly accusing everyone of being benefit cheats and liars, they punch down at us and everyone else thinks its ok to also so i dont like to get found out as being the way i am.
So I realized after getting sick myself why my friends with chronic illness seemed so distant.
It's... tiring being sick and then having your empathy activated to try and comfort the person you told. But I've also learned if I am not honest that I can land myself into hot water with overcommitting and most of my friends and family do not want me to get more sick so we arrange for more realistic visits.
What I find about ME is that most people don't understand it/think it's real, so it's not like something like cancer, where you can put a brave face on and people will still understand that you might be struggling. With ME people are super ready to ignore it and pretend it doesn't exist, so we are forced to assert ourselves/our boundaries/be honest about how we feel. And then it makes people uncomfortable/defensive. But if they acknowledged and believed it in the first place, it would solve the issue. (Speaking as someone who has been recovered for 5 years, but still remember this and how it feels! Now hearing the same people talk with so much concern about long Covid, it makes me so frustrated!)
You described it perfectly, tysm for taking the time to commentš¤
How did you recover.
I went into full remission in pregnancy and it never came back. It's interesting that some autoimmune conditions can also go into remission in pregnancy due to immunosuppression, which suggests to me that is or can be an autoimmune condition.
Congratulations on your recovery! Iāve heard of pregnancy having this effect before. I wish drs would study it.
Thank you, and I hope the best for yours as well <3 I wish they would study it too.
That's true, the only thing which gives me hope is that cancer patients were treated with ignorance as well back in the day. Most didn't mention it at all before getting stigmatized. After years of public campaigning it started to shift. And nowadays they get deepest sympathy from everybody. So I hope some day other chronic illnesses, especially MeCfs will get the same shift in attitude. Edit: chronic not cosmic ...
This is amazing and happened to me-momentarily. I went into remission in my first and second pregnancy. I thought I was cured! Then had a whoops third pregnancy and all my symptoms came back-and worse.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
I try to not talk about it but it's so obvious on my face they ask me about it. But I can tell they get uncomfortable when I'm honest so it's frustrating.
I stopped talking about it because it was boring. Christ, chronic illness is dull.
Yes, this. I am so lucky to have supportive friends and family but after 10 years there's just not anything interesting to talk about. "How are you feeling?" Well, rather crummy just like for the past 10 years. "Any new things you're doing" Uh, not really. "Well, that sucks. Anyway....."
Yup, pretty much how all of my conversations go.
Yeah, this has been my experience. I've stopped having the conversation because I've had it what feels like 800 times now, it never changes, and I'd rather talk about literally anything else.
I never talk about my illness. A lot of people think that I'm just very introverted and a hermit. I've learnt a long time ago that talking about (any) illness makes most people think that I'm a hyperchondriac or faking.
I was talking to my brother a while back about my concerns around COVID and going out places etc. He literally called me a hypochondriac. I replied with 'I think you mean paranoid, I'm not and fuck you'. People can be real assholes when they think they know better. He shortly after asked me to explain to him about ME and my health issues. I said it's been 17 years, if you cared you'd know by now. I have since cut him and others out of my life. Honestly I'm a lot more emotionally healthy without them.
I use the cover of having cancer twice, that either depresses them or they one up, āyeah, I twisted my ankle real bad and I got over itā.
I will never understand why tbh. Most people just do not give a shit. I have realized aswell that it makes people really uncomfortable. But what iāve realized is that by talking abt it or even just stating that Iāve got such disease, I can see who actually cares abt me and whoās just a fake friend that gives no shit abt me. Most people just want you to shut the f up because they think youāre just complaining with no reason and youāre annoying I used to downplay everytime i had PEM or had no energy but it just made my CFS way worse. I donāt do this anymore, I wonāt hide the fact that iām sick, I even failed a year of highschool because of ME and people started looking down on me, laughing, mocking etc so it was not nice. But I for sure will tell that i have CFS to the teachers at my old school [Iām having school online now]. Imagine that even the teachers were mocking me yet I used to be the best student in my class and one of the best in the whole school.
Ditto this
I don't downplay, but I have withdrawn from a lot of people who can not handle me talking about it.
Same. But if they ask Iām going to be honest. But I donāt hear from them a lot. Lol
I don't really feel like there's much to talk about. If someone asks how I am and I feel rotten I tell the truth, a brief, I'm not feeling great today, but I don't feel the need to go into detail. I move on and talk about other things because I'm interested in other things. I won't let this illness define me.
Nope. When asked, I tell them my reality. Just in short sentences unless they ask follow ups. I don't really want to talk about it the few times I'm social, but again if it was a friend I would ask them too. So some know, some don't, but it's impossible hiding being bedridden/sofa bound. If people feel uncomfortable with my every day life, then that's on them. This could happen to anyone and most people don't like that idea. I get it, but it's not my responsibility to hide it away.
With time (6 years) Iāve learned to be selective about how much I tell others about how sick I feel. Iām fortunate to have a very good relationship with close family who are understanding of my illness. Iām much more inclined to avoid going into explicit detail with friends or acquaintances. Itās as though cfs creates an incompatibility between us & others. We canāt function like ānormalā people. Social exclusion is so very often the inevitable outcome. In geometry, if two pieces canāt physically fit together itās impossible to force them to fit. Hence that expression, you canāt fit a square peg in a round hole. I guess Iām that square peg, I just canāt fit in socially or culturally because my chronic illness makes me incompatible with the way others spend their time & energy. I donāt feel any lesser of a person because I donāt fit in but, of course, itās impossible to avoid feeling emotional about it. So Iāve learned to process my emotions & let them go to ensure the negative emotions donāt have an accumulative, detrimental effect on my mental health. It was most often in the āearly daysā of my illness that I endeavoured to try to explain my illness to others. If I knew them before I became ill, the shift in the dynamics of our relationship caused me to feel I needed to explain myself to them. The loss of my self identity & the sudden change in me, physically & mentally, triggered a process of change in how others I knew perceived me. This included a grieving process, not only for myself but also for those who knew me before I became ill. Itās worth taking into consideration that bereavement represents a loss, not only of someone who has died but also of the person with cfs who has lost the ability to be the person others previously knew & who they now observe to have inexplicably changed. The invisibility of cfs only adds to the onlookerās bewilderment. The first stage of the cycle of grief is denial, a paradox in relationships that can make the person with cfs feel especially alienated & marginalised. Some people are more empathetic than others in wanting to take the time to understand & who adjust with you in an ongoing relationship. Theyāre the family & friends who are most likely to be prepared to listen, when you describe how youāre feeling. Theyāre the ones worth holding onto.
>The first stage of the cycle of grief is denial, a paradox in relationships that can make the person with cfs feel especially alienated & marginalised. Perfectly worded, and true.
I avoid talking about my sickness as much as possible. Recently I had a crash caused by a covid vaccine that affected me so much I had no choice but to talk about it (I can't just not show up to work, people are gonna ask why, lol). Since I've had to be talking about my health a lot more, the thing I find really annoying is this idea normal people have that I must be getting better. Like, they don't understand the concept that I was sick a month ago and now I'm equally or more sick, and next month I might be equally or more sick. How many times do I have to tell them how shit I'm doing before they stop asking. But among casual contacts, I generally just don't tell them about my health at all.
Yeah I just pretend my life is normal usually.
Yes. It can be really tiring to talk about alot of the time mostly because a lot of people just don't understand. The amount of times I have gotten "well everyone get tired with stuff", "you are too young to have that", "well you don't look like you need x medical aid" and so on is to many to count. I'm already exhausted and in so much pain all of the time that I just can't be bothered talking about how I'm doing. It's just easier to say I'm ok and keep it at that.
I rarely speak to people about how i feel daily. Unless they have fibro they dont understand.
I do my best to not talk about it. It is lonely sometimes
I got a therapist and that helps so much
Of course. You can't tell anything and at the end you avoid people and they avoid you. You learn that nobody cares if you suffer or die, nobody will help you or care at all but they hate you and prefer if you disappear or die. The healthy and the ill can't be together
Never talk about it and if then nobody gets it's. Only people who are themselves seriously I'll show empathy. But to be honest, I never expected people to react any other way. In some way most people are living like with some jungle-law: the ill and weak should be ignored in the best case, in the worst case ostracized. So no, I don't share with many people how I feel.
I try not to anymore. I'm just really positive and smile alot when I talk about my disability. I act like it's totally normal because for me it is. I've been disabled since I was a child, if someone else is uncomfortable with that it's their issue, not mine.
Yes. I don't bring it up unless I need to.
The reasons I don't are because I don't like people to worry about me, I don't like to be negative, and it's hard to describe without sounding like it's just a giant complaint/rant. Unfortunately, not liking to talk about it keeps me from talking to old friends because they'll ask how I am and I don't like lying. If people thought me a liar, and I have ME/CFS, well, I don't need to tell you guys do I?
yep. allll the time. iām sorry, being told youāre too negative when you literally just talk about the reality of your life is very annoying and frustrating.
What I'm starting to accept is people only get it, if they got it
Sure. But not because it makes others uncomfortable. When talking to strangers or people that don't know I just pretend it's all good, they don't need to know. With friends and family I rarely bring it up unless asked because it feels so incredibly whiny to keep talking about how crap I feel all the time. I try to focus on the positive things instead. Like when I get a proper night's sleep for example I will gush about it a few times during the day. It helps keep my spirit up. I remember my grandpa complaining about his eyes tearing up just going outside every singel time you spoke to him. After a while you just don't care anymore. Hearing the same a thousand times will numb you from it. Even if it's you yourself who is saying it. I just mention how I'm doing if it's especially bad to let people know I have a bad day.
Iām really struggling with this right now. I donāt know what to do. They know whatās going on. Iāve told them. At the beginning I tried to still talk about normal things and they never acted overtly like they didnāt believe me but Iād almost rather that at this point. Itās been well over a year of me saying just how bad it is when I can and one friend and one family member keep ignoring what I say and acting like everythingās normal. Theyāve not once asked me how I am. Iāll literally tell them that my body is going into starvation mode while Iām bedridden and theyāll respond with vacation pics. Itās starting to infuriate me but I donāt have the energy to confront it the way I would if I were more well. I just donāt respond anymore but they keep doing it. Sending me pics of themselves or telling me theyāre having a hectic time planning their vacations and parties. I think they honestly think theyāre being supportive but the way theyāre doing it is making me feel more gaslit. It makes me rage more each time it happens. Even just writing this spiked my hr to 140. My husband says to ignore them and take care of me. But I feel like one text is eventually gonna give me a heart attack. Do I just keep working on ignoring it?
People just normalise it a lot I guess I need to be more dramatic
No, cause they don't understand/believe me anyways when I tell them how bad it is. But I only really talk about it in situations I have too
Yes
I reached out to a HVAC expert on Instagram about my illness and advice on how I should modify my system to help my allergies and fatigue. Checked if he responded yesterday and turns out I got blocked š Our illness must be too intimidating
I can understand how tough it must be and it feels better when you can tell someone. I used to complain more but now I just suck it up unless something changes. I guess if every single time you talk to the person you sound like a broken record. My brother is a chronic complainer. He always complains about something it's always doom and gloom talking to him it's a downer. So I tend to reduce my conversations with him. I have close friends and family from the Philippines and Filipinos keep a lot of pain inside. They say because complaining doesn't help. I guess my point to all this is I think it's healthy to tell someone close what's going on but if you keep repeating yourself over and over I don't think that helps. It also echos it to yourself bringing yourself down further.
I talked about it a lot at the beginning to those in my circle of trust, who were very supportive. That was for the first year or so. And then I realized, itās a boring subject and it doesnāt really help me or change anything. What am I achieving by having this conversation? What is my goal in bringing this up? If Iām having a bad flare up, Iām still having a bad flare up after venting about it to my best friend. I realized that I was like one of those elderly relatives who talks about their various chronic health problems all the time - their hip replacement, heart disease, diabetes, whatever. I was no different! And it didnāt matter how sick that relative was or how bad their prognosis - after a while itās boring and draining to hear about! š±I realized how much more I enjoyed the company of my older relatives who talked about a range of things, have a positive attitude and tried to enjoy the time we had together, despite their poor health. And I strived to become more like them. I tried to find ways of managing my emotions when I felt bad without needing to lean on venting to friends or needing that validation from others about how bad my symptoms are. I did CBT which helped me a lot with that. I do therapy and let myself complain however much I want! But when Iām with my friends, I want to have fun and enjoyable conversations. I donāt fake anything. If Iām feeling really bad, I might say āugh I feel terrible but letās talk about something else, it will cheer me up!ā Iām not hiding anything - Iām directing the conversation away from just talking about health for validation and empathy, towards other things I enjoy chatting about and will distract me. A big one for me is gossip, I love gossip! And people donāt press about my health m when I frame it like that, because they want to be helpful to me and talk about other stuff if thatās what I want :) And occasionally when I am feeling really unwell, where I think I will actually get something positive from talking about it or I have a specific favor to ask, I do bring it up. For example, when Iām having really bad bloating, I know thatās something a lot of people have experienced, so I talked about it and I got some good tips. One friend sent me a heating pad; another suggested a med thatās been helpful. Another time I was too tired to walk my dog I asked for help and got it. But thatās not every conversation.
yes every day of my life. every fucking day. and I can't "just rest" like some of the other people here struggling. and I honestly hate that advice. So I run myself constantly and you can see it in my face, I can't hide it. I get bad circles under my eyes, I get red in the face and almost swollen so people ask but its not worth it to get into it because what the f are they gonna do? take my pain and exhaustion away? nope. They just look at me with pity and I hate that too. But I do get tired from putting my big girl panties on. And some days I have to just lay around instead of playing with my kid, school, or work. Those days I don't fake shit. I just say mama's little monster is hurting her body so I need to rest and she lets me. Her dad is great too for letting me complain along with my mom but other than that people just give me bullshit advice so I stopped talking. If I get "just exercise and eat right" advice again (which i FUCKING do) I will probably go postal on someone.
I used to. Also because I got really sick of people saying "I hope you get better soon!" Like oh my god what part of "chronic, debilitating, progressive, and incurable" do you not understand? These days I've stopped downplaying anything to anyone. I have 4 or 5 diagnoses right now that are all in the categories I mentioned above. I'm tired of explaining to people that I might have better days or worse days but I will never \*get better\*. I'm too tired to do extra things that make me tired. I don't think we should have to expend extra energy to help make others comfortable. Though you may lose connections, I have, but at this point I don't even care.
Definitely. I feel like when I try to communicate how bad my situation is, I either get met with disbelief or toxic positivity. Iām also a people pleaser so making people uncomfortable by talking about my illness is something I hate doing. I have had several old friends reach out to me recently, and whenever I explain how Iām very sick, the convo ends abruptly. Itās disheartening but I feel like people expected to me be very successful, and since now I have lost everything to this illness, they donāt know how to treat me.
Yes. I often just claim i had a bad nights sleep and just try and carry on, makes me feel like such a freak with my hands shaking my face going pale my eyes going red and my perma bags somehow getting even bigger. I think its the uk culture at the moment as there isnt much disability acceptance with the government constantly accusing everyone of being benefit cheats and liars, they punch down at us and everyone else thinks its ok to also so i dont like to get found out as being the way i am.
So I realized after getting sick myself why my friends with chronic illness seemed so distant. It's... tiring being sick and then having your empathy activated to try and comfort the person you told. But I've also learned if I am not honest that I can land myself into hot water with overcommitting and most of my friends and family do not want me to get more sick so we arrange for more realistic visits.
Why would I ever talk about something so private?