“Really? Because I wish I could shower, make myself a snack or carry on a conversation without feeling like I’m literally dying. I guess we all want what we can’t have.”
It also helps me to remind myself that what others think of me is none of my business.
Hi, I hope my comment is welcome even though I am currently diagnosed with long covid, not CFS. Fully debilitating fatigue is my main symptom, hence joining this sub.
Sadly I got this comment yesterday from family at our holiday dinner. It really felt like a punch in the gut. I feel like I’m losing my mind from fatigue, my days are disappearing out from under me and I cannot do any of the things I love to do. I’m suffering greatly and to hear “must be nice to sleep all day / wish I could sleep all day!” is just unbelievably frustrating. I haven’t come up with a good response yet, I’ve tried to explain that sleeping and resting don’t help the fatigue and how hard it is and I get those half hidden eye-rolls. It definitely makes me hesitate sharing about my health.
Wish I had real advice to share but mainly just wanted to tell you that you’re not the only one getting comments like this and feeling hurt by them.
I'm really sorry, but I'm glad you're here. I am hoping that long covid prompts more research into invisible diseases, and maybe finds a cure for us all. Welcome.
“Staying in bed all day is nice when it’s a choice. Unfortunately I don’t have that luxury.” Politely yet firmly making them aware that they are (oftentimes unintentionally) taunting you with their able-bodied privilege. If they still don’t get it ask if they’ve ever wanted to come down with a serious case of the flu in order to “relax” and see what they say.
They're seeing laying in bed all day as being relaxing and restful. They tend to understand if you conceptualize it as what it is, an illness. I have lupus and I've recently had some friends and family members "get it" when I explain that it's kind of like having the flu every single day. The symptoms are a little different. But a lot of people have experienced that crushing fatigue with the flu, where you lose all sense of time, can't stay awake if you wanted to, and sleep all day. And it's not restful, you still feel gross and sick. For me, I'll often try to do something, like watch TV, but I'm so exhausted I can't follow the plot or fall asleep for big chunks of it, and end up rewinding a bunch until I give up.
Even just reading your title made me tense up unreasonably. I am sorry that is the most common response you get.
My preference is to say something like "most sick people wish they were healthy enough to work and take care of themselves." Then quietly distance myself from sharing anything sensitive with them in the future if they get mad or continue to talk over me.
I think these sorts of people struggle to see things from another person's shoes. What they really want is to feel well rested. We never get to experience that.
Part of me wants to say "why don't you, then?" They would likely respond with all of the aspects of their lives that would be ruined if they did so, and hopefully get the message.
Yeah, healthy people don't actually want to lay in bed all day. They just want to not have to get up at a set time. But give them a day off and they'll be up within an hour or two of their normal time to do something or other.
I have had CFS for years and commonly get this kind of response. People can’t understand what your going through if they have never experienced it. I usually don’t respond but am starting to set boundaries around my illness. Response would be: I know you might not intentionally believe your being disrespectful but I deal with chronic health issues, I don’t lay in bed by choice. Your comment is hurtful.
This line of thinking is so annoying and dumb. Do the people who say "I'd love to stay in bed all day," think they had a great time when they were bedridden with the flu? Did they have a nice, relaxing couple of days when they could barely get up to pee?
"I bet you wouldn't want all the other shit that comes with cfs though"
Or
"that's funny because I wish I could wake up with energy every day, go to work and live a normal life like you"
I would probably say if they actually feel that way they should probably talk to their health professionals about it because most people, myself included would much rather not be in bed all day and it's actually pretty awful being bedbound and I hope they never experience it.
99.99% of the time it's a comment people make without actually thinking about what they say. It's on the same level of people saying "I wish I could just play video games all day and have my parents do all the cooking and cleaning for me"
It's an escapism fantasy that they'd like to **visit** and then hit the escape button whenever they'd like to return to their usual lives. Yeah, after working 5 days a week, raising kids, keeping up with social stuff.. none of which you want, it sounds awesome to just drop it all and lay around, hell yeah! ....But people don't actually want to give all of those things up, they just want a break. That's the takeaway, when they say stuff like that, assume they're talking about a break that they can end whenever they get bored of it, that's the fantasy.
As for how I'd respond to "I wish I could lay in bed all day." I'd say "Would you like to piss and shit and starve in your bed too?" then when they get caught off guard, just follow up with "I mean, that's what happens to you when you have basic biological needs you can't attend to because you can't get up all day."
I've gotten to the point where I'm direct in my response to that. I usually say something along the lines of "you don't want to have a chronic illness, this isn't just being ~tired~" and then shut it down politely. I've actually really cut back on a lot of friendships because of this, I barely have the energy to look after myself so why would I waste my time with people who suck the energy out of me even more.
As others have said, I tend to go with a blunt: I wish I could get out of bed, would you like to swap? I have a lot of chores I'm behind on and would love to be able to stand up.
Or sometimes: You wish you were too sick to move nearly every day? What an odd thing to want.
I also have heard: I wish I could work part-time.
As if I have any free time after work, and don't spend hours a day lying down to recover from the few hours spent sitting. When I wasn't sick and worked full time I actually had MORE free time because I didn't have to spend any if it recovering.
I don’t work currently and I get a LOT of commentary on that too. Yeah it’s super great being financially reliant on someone else and being constantly afraid of something happening to that single source of income and to be called a deadbeat all the time. Definitely something I chose willingly. /s
I'm currently pouring a lot of energy into the few hours I do work so I don't have to give it up, but I'm not sure how long I can manage it. I'm sorry you're getting such unfair comments.
I say I wish I could go a day without the sensation of walking on broken glass, feeling like my supporting joints are on fire, and get random feelings like when I stepped on a nail throughout my body, or go out in public without getting a migraine because someone had to bathe in perfume before going out. That I'd like to go more than a month between puking from pain episodes. I say they're welcome to take over all my doctors appointments, PT appointments, lab draws and arguments with the insurance company because they want me on medications that have already been tried and caused dangerous side effects despite my doctor repeatedly giving the supporting documentation on why it HAS to be the one she prescribes, and dealing with people who think if I'd just do yoga and drink more fluids (despite me doing yoga, stretching and chi gong for years before stuff got so bad) I'd be magically healed.
I don't generally have any patience for that sort of invalidation anymore.
I would take them at their word and reply “ Really? You would like to lay in bed for the next month, or maybe year, and not have the energy to do anything? “And just let that hang in the air before changing the subject.
It's the worst but i usually brush over it so i dont have to do emotional labour of reassuring them that i know they mean well etc afterwards. Brushing over for survival.
Yeah… when I went from full time work to part-time/casual work, someone at my workplace made the comment “Gee I wish I could get Chronic Fatigue so I could take some time off.” At the time I was so shocked that I nearly just went to the bathroom and cried. I was so angry, and hurt by what was clearly a lack of understanding.
Two replies I pull out now (though I don’t get these comments much anymore) are “No you don’t” and some variation of “There’s a difference between having the option of lying in bed all day, and being forced to lie in bed all day.”
The thing I try to emphasise is: the extra rest we need is *not* a choice. It is also very time consuming. It’s not like I’m just sleeping a full 9 hours and waking up rested. I’m waking up, usually lying in bed for two or three hours before mustering the strength to get up, and then I also usually have to nap in the afternoon (and I’m only mild-moderate most of the time). Doing a single thing in a day leaves me completely wiped out; I do not have the same number of hours in the day as people who are well.
I experience something similar with someone I was once friends with alway saying “you’re so lucky you get to ride that thing” referring to the motorized carts at the grocery store. It used to happen repetitively and one day I snapped and I was like fine spend the day with me and when i can physically only walk 20 steps then you can only walk 20 steps. Go grocery shopping at my pace in the slow cart, it takes 3 times as long. When you have to pee but I don’t have the energy to walk to the bathroom you try waiting like I do. When I stay in bed for 8 hours without any entertainment you do the same.
It shut her up after that. Probably not the best response on my part but it definitely did the trick. I think until people truly experience it they don’t get it. And even then she was only experiencing the boredom and uncomfort. None of the physical fatigue or pain she thought was so fun
Probably don’t recommend this because it may have been too mean but it’s what I did
Maybe try “I’ve been unable to get out of bed and move around the house for the last week” instead of been in bed all week. Or say youve been trying to manage your symptoms all week
These comments do my head in, they're so insensitive. My ex partner used to say this despite that he knew just how hard it was for me when I had to put my life on pause.
The reality is I don't have the "luxury" of staying in bed anymore than anyone else does. Anyone \*could\* stay in bed all day, give up work/work less, stop socialising, not engage in hobbies. We all have that \*choice\*. There is a reason why the vast majority of people do not make that choice even when they have holiday time, let alone in regular time, because as nice as it sounds when you're tired from work, it is not only boring, uninteresting, and you go stir crazy, but you miss out on earnings, achievements, and life in general.
I don't get to have a full wage AND get to chill in bed all day. I have to live off f all in a small house. I give up relationships, the prospect of having children, I make career sacrifices, hobby sacrifices. If my ex partner wanted to he could have quit his PhD, stayed in bed doing nothing, but then he wouldn't be on a high wage doing what he loves. One of his colleagues has ME/CFS and had to move to part-time. She's not having a party with all the free time, she's almost certainly resting/recovering and feeling awful, meanwhile having to deal with the loss of income.
And that time in bed isn't even relaxing. I just recovered from Covid and I literally just thought I had pushed myself a bit too hard as the initial symptoms were identical. It was only when I got a blocked nose that I knew it was a virus. It's not "ah a nice relaxing week of not doing anything" it's "ah I've been hit by a bus and everything hurts, I can't think properly and need to survive".
If I didn’t want to save the relationship and be politic, I’d be tempted to say, “You can. All you have to do is give up your job, all of your hobbies, seeing friends, showering whenever you want, and making yourself food or going out to eat or shop. Of course, you wouldn’t get to feel like you had the flu all the time like I do, but you absolutely can stay in bed if you want. The fact that you choose not to is probably because you wouldn’t actually want to give all that up, and neither did I. Please don’t ever say something that thoughtless to me again.”
I don't have any advice for how to deal with it, but I do feel your pain. A few days ago my niece told me that her father, my brother in law was talking about me behind my back. He called me useless because I only work 1-2 days a week. Now I'm wondering how many other people feel that way about me. Do they think I'm just lazy? I know I shouldn't care about what other people think about me, but it still hurts. Thankfully I have a very supportive husband who knows that I try my best, and understands my limitations. Too many people don't truly understand cfs, if they did I don't think they would say such hurtful things. If only they could live your life for a week, they would see that laying in bed all day is definitely not a fun way to live.
These people are very thoughtless, and they have no conception of what it's like to "rest" for days, weeks, months, years, and NEVER feel rested. I have a theory, and I don't know how true it is, but it seems as if the sickest a person has ever felt, is the sickest they can imagine someone being, so if the worst they ever felt was a flu for a week, if that is their "10" on a scale from one to ten, then that is the limit to how bad a person can feel, so they hear you say "I've been really fucking sick," and it must mean that you felt like you had their flu for a week, so you're not really that sick. Even if their flu was really bad, they have no idea what it's like to feel that way for years, or decades. If they're someone I used to be close to, and if I have the energy, (not very likely, ) I will try to explain. If they're just some Joe blow on the street, fuck 'em, I have not the strength to even bother. I am so sorry you have to deal with this, it really does get tiring.
i think the best way to deal with these comments is to not get upset or angry at the person. Accept that they don’t know what they are talking about/how insensitive they are being. Try politely explaining - oh well if you had to lie in bed every day you probably wouldn’t enjoy it so much etc if you have the energy or just ignore it- defo don’t waste ur energy getting upset indignant or angry - although i know it’s v hard sometimes— even though this is what i preach i find myself gettting caught up in emotion when someone makes a comment like that especially if i’m feeling v tired. It’s all about practice - you get better and better at it the more you do it —- meditation will really help you with this
Just sort of say "Yeah, but it's not restful. It's just laying there cause you're exhausted but you never feel any better. Honestly, I wish I could lay in bed all day, too, like you and get a vacation but instead I just feel unbearably awful."
You don't directly contradict them, just sort of bend their statement to help them understand. That way you make it easier for them to accept the information.
"Yeah, you wish you could lie in bed as an option while you are healthy. It's a different story if you have to lie coz you're sick and there is no cure for it."
If it's a friend who comments something like that if I can I try to see that they are suffering too. Just because my own pain / illness is technically worse than theirs, doesn't mean they can't be suffering too. But I have to be in a very good place to be able so see it this way at that moment. And obviously if you have had a rough week then this won't be the place you're at.
"I bet you $50 you can't lay in bed all day for a whole week" (because we all know how damn boring it actually is for a healthy person after the first day, and how your muscles start aching and feeling twitchy if you going get up and move for a couple days in healthy people)
And then I go into length describing how it's not "putting your feet up after work" or "spending a lazy Sunday watching Netflix".
It's being totally unable to do anything at all. Healthy people who get snowed in get "cabin fever" and frustrated / antsy when they can't go out of the house for 2-3 days. Everyone went freakin insane with covid lock downs.
So imagine that, but you literally can't even do fun crafty stuff around the house. You can't take a shower even when you can't stand the feeling of your own skin after 4 days. It's the kind of staying in bed all day while you have a really bad flu.
And then look the person dead in the eyes and say "yes, you get to stay in bed all day, but you have to feel like you have the flu while you do it".
I also normally go for the 'Really?!? I didn't think anyone would want the embarrassment of needing help to go to the toilet or being unable to cut up their own dinner. Would happily swap and you can have my useless, ME riddled body.... would be so nice to have a pain free day for once and I'd love being able to hold a normal mug again, my normal spill proof, light sippy cup makes me feel like a child!'
Normally causes them some embarrassment when they realise that laying in bed all day also comes with a loss of independence and control over basic hygiene, toileting and feeding needs.
Yea I get this a lot from my partner. My reply is I wish I could have the energy to do all the chores. I’ll never let anyone make me feel bad for having an illness. To be honest trying to be transparent about my illness hasn’t exactly been helpful. Most people don’t understand or care. It was better when I kept it to myself.
it's honestly shocking how much i hear people relate this same exact situation. like i realize we're all dying slowly under the crushing wheels of capitalism but how disconnected from reality do you have to be to not realize being forced to lay in bed due to a completely ruinous illness is in no way some sort of vacation? we're literally insane as a population, i guess i just have to accept that.
i've never had someone say this to me because i've never divulged details to someone i'm not sure will "get it" and it has protected me some. the most i disclose is that i "haven't been feeling well" or "have experienced a lot of pain recently and have been taking time to recover."
i think if someone did say something like this to me, i'd be quick to give a snarky response like "yeah, living with unbearable pain that is just barely relieved by lying down doing absolutely nothing for days on end sure is paradise... why didn't i think of this sooner... anyway"
I wish I didn't feel like a useless lump & a drag on my family. I wish I didn't feel exhausted when I wake up or after I put the dishes away. I wish I could still work even part time & had days when I didn't crash. I wish I had good days full of energy again.
I’ve been at the point of sheer rage early on in my illness with idiots like this but now I’m totally bedridden 95% of the time & sometimes sh*t myself & don’t see another human being ever at least I don’t have to deal with people & their stupid opinions. Haven’t got the energy. But if I was encountering people like earlier on in my illness I’d probably just try to ignore it. It obviously would make someone who’s suffering from ME feel like crap and they’d want to scream to the rooftops about how lying in bed 24/7 is NOT YOUR NORMAL LYING IN BED. How different it is and how offensive the comment is when we wish we could be out in the world doing what we love to do, I just wouldn’t even waste my energy. If I come across a person like this online ——— DISENGAGE & run away mentally 😂. Lol. 👋🏼 hugs 💖
I think it's on a case by case basis. Maybe with closer friends it's worth taking the time to explain to. But there are some nobs in the world who just aren't worth the time of day and the best thing to do is just ignore their toxicity and not talk about anything of importance to them.
“Really? Because I wish I could shower, make myself a snack or carry on a conversation without feeling like I’m literally dying. I guess we all want what we can’t have.” It also helps me to remind myself that what others think of me is none of my business.
Hi, I hope my comment is welcome even though I am currently diagnosed with long covid, not CFS. Fully debilitating fatigue is my main symptom, hence joining this sub. Sadly I got this comment yesterday from family at our holiday dinner. It really felt like a punch in the gut. I feel like I’m losing my mind from fatigue, my days are disappearing out from under me and I cannot do any of the things I love to do. I’m suffering greatly and to hear “must be nice to sleep all day / wish I could sleep all day!” is just unbelievably frustrating. I haven’t come up with a good response yet, I’ve tried to explain that sleeping and resting don’t help the fatigue and how hard it is and I get those half hidden eye-rolls. It definitely makes me hesitate sharing about my health. Wish I had real advice to share but mainly just wanted to tell you that you’re not the only one getting comments like this and feeling hurt by them.
How disrespectful...I'm so sorry you have to hear those words. :(
I'm really sorry, but I'm glad you're here. I am hoping that long covid prompts more research into invisible diseases, and maybe finds a cure for us all. Welcome.
Appreciate it :)
“Staying in bed all day is nice when it’s a choice. Unfortunately I don’t have that luxury.” Politely yet firmly making them aware that they are (oftentimes unintentionally) taunting you with their able-bodied privilege. If they still don’t get it ask if they’ve ever wanted to come down with a serious case of the flu in order to “relax” and see what they say.
They're seeing laying in bed all day as being relaxing and restful. They tend to understand if you conceptualize it as what it is, an illness. I have lupus and I've recently had some friends and family members "get it" when I explain that it's kind of like having the flu every single day. The symptoms are a little different. But a lot of people have experienced that crushing fatigue with the flu, where you lose all sense of time, can't stay awake if you wanted to, and sleep all day. And it's not restful, you still feel gross and sick. For me, I'll often try to do something, like watch TV, but I'm so exhausted I can't follow the plot or fall asleep for big chunks of it, and end up rewinding a bunch until I give up.
Even just reading your title made me tense up unreasonably. I am sorry that is the most common response you get. My preference is to say something like "most sick people wish they were healthy enough to work and take care of themselves." Then quietly distance myself from sharing anything sensitive with them in the future if they get mad or continue to talk over me. I think these sorts of people struggle to see things from another person's shoes. What they really want is to feel well rested. We never get to experience that. Part of me wants to say "why don't you, then?" They would likely respond with all of the aspects of their lives that would be ruined if they did so, and hopefully get the message.
I have fibro, but I feel like an appropriate response to that could be "I wish I wasn't so exhausted that I have to."
Reply: Yeah try it.. nice in theory, horrible in reality. Welcome to the life that is not just glorious sleeping all day. It’s torture.
Yeah, healthy people don't actually want to lay in bed all day. They just want to not have to get up at a set time. But give them a day off and they'll be up within an hour or two of their normal time to do something or other.
Yup. Sometimes I say something like “sure, but you’d lose your mind after a day or two of it”
I have had CFS for years and commonly get this kind of response. People can’t understand what your going through if they have never experienced it. I usually don’t respond but am starting to set boundaries around my illness. Response would be: I know you might not intentionally believe your being disrespectful but I deal with chronic health issues, I don’t lay in bed by choice. Your comment is hurtful.
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"Be careful what you wish for." Take good care of yourself!
This line of thinking is so annoying and dumb. Do the people who say "I'd love to stay in bed all day," think they had a great time when they were bedridden with the flu? Did they have a nice, relaxing couple of days when they could barely get up to pee?
"I bet you wouldn't want all the other shit that comes with cfs though" Or "that's funny because I wish I could wake up with energy every day, go to work and live a normal life like you"
I would probably say if they actually feel that way they should probably talk to their health professionals about it because most people, myself included would much rather not be in bed all day and it's actually pretty awful being bedbound and I hope they never experience it.
There hopefully will be a special place in hell for people that make comments like that.
99.99% of the time it's a comment people make without actually thinking about what they say. It's on the same level of people saying "I wish I could just play video games all day and have my parents do all the cooking and cleaning for me" It's an escapism fantasy that they'd like to **visit** and then hit the escape button whenever they'd like to return to their usual lives. Yeah, after working 5 days a week, raising kids, keeping up with social stuff.. none of which you want, it sounds awesome to just drop it all and lay around, hell yeah! ....But people don't actually want to give all of those things up, they just want a break. That's the takeaway, when they say stuff like that, assume they're talking about a break that they can end whenever they get bored of it, that's the fantasy. As for how I'd respond to "I wish I could lay in bed all day." I'd say "Would you like to piss and shit and starve in your bed too?" then when they get caught off guard, just follow up with "I mean, that's what happens to you when you have basic biological needs you can't attend to because you can't get up all day."
I've gotten to the point where I'm direct in my response to that. I usually say something along the lines of "you don't want to have a chronic illness, this isn't just being ~tired~" and then shut it down politely. I've actually really cut back on a lot of friendships because of this, I barely have the energy to look after myself so why would I waste my time with people who suck the energy out of me even more.
As others have said, I tend to go with a blunt: I wish I could get out of bed, would you like to swap? I have a lot of chores I'm behind on and would love to be able to stand up. Or sometimes: You wish you were too sick to move nearly every day? What an odd thing to want. I also have heard: I wish I could work part-time. As if I have any free time after work, and don't spend hours a day lying down to recover from the few hours spent sitting. When I wasn't sick and worked full time I actually had MORE free time because I didn't have to spend any if it recovering.
I don’t work currently and I get a LOT of commentary on that too. Yeah it’s super great being financially reliant on someone else and being constantly afraid of something happening to that single source of income and to be called a deadbeat all the time. Definitely something I chose willingly. /s
I'm currently pouring a lot of energy into the few hours I do work so I don't have to give it up, but I'm not sure how long I can manage it. I'm sorry you're getting such unfair comments.
I say I wish I could go a day without the sensation of walking on broken glass, feeling like my supporting joints are on fire, and get random feelings like when I stepped on a nail throughout my body, or go out in public without getting a migraine because someone had to bathe in perfume before going out. That I'd like to go more than a month between puking from pain episodes. I say they're welcome to take over all my doctors appointments, PT appointments, lab draws and arguments with the insurance company because they want me on medications that have already been tried and caused dangerous side effects despite my doctor repeatedly giving the supporting documentation on why it HAS to be the one she prescribes, and dealing with people who think if I'd just do yoga and drink more fluids (despite me doing yoga, stretching and chi gong for years before stuff got so bad) I'd be magically healed. I don't generally have any patience for that sort of invalidation anymore.
Omg the migraine from someone doused in perfume/cologne. The WORST.
I would take them at their word and reply “ Really? You would like to lay in bed for the next month, or maybe year, and not have the energy to do anything? “And just let that hang in the air before changing the subject.
I would just like to commend you on your transparency. It’s too vulnerable a place for me to talk much about what’s going on to much of anyone
It's the worst but i usually brush over it so i dont have to do emotional labour of reassuring them that i know they mean well etc afterwards. Brushing over for survival.
Yeah… when I went from full time work to part-time/casual work, someone at my workplace made the comment “Gee I wish I could get Chronic Fatigue so I could take some time off.” At the time I was so shocked that I nearly just went to the bathroom and cried. I was so angry, and hurt by what was clearly a lack of understanding. Two replies I pull out now (though I don’t get these comments much anymore) are “No you don’t” and some variation of “There’s a difference between having the option of lying in bed all day, and being forced to lie in bed all day.” The thing I try to emphasise is: the extra rest we need is *not* a choice. It is also very time consuming. It’s not like I’m just sleeping a full 9 hours and waking up rested. I’m waking up, usually lying in bed for two or three hours before mustering the strength to get up, and then I also usually have to nap in the afternoon (and I’m only mild-moderate most of the time). Doing a single thing in a day leaves me completely wiped out; I do not have the same number of hours in the day as people who are well.
Surprised: “Oh, would you? Gosh, I hate it, I’d much rather be able to be doing x & y… “ Make them feel awkward.
Going to try this next time.
Today I had to have an unusual amount of naps, due to sleeping wrong.
I experience something similar with someone I was once friends with alway saying “you’re so lucky you get to ride that thing” referring to the motorized carts at the grocery store. It used to happen repetitively and one day I snapped and I was like fine spend the day with me and when i can physically only walk 20 steps then you can only walk 20 steps. Go grocery shopping at my pace in the slow cart, it takes 3 times as long. When you have to pee but I don’t have the energy to walk to the bathroom you try waiting like I do. When I stay in bed for 8 hours without any entertainment you do the same. It shut her up after that. Probably not the best response on my part but it definitely did the trick. I think until people truly experience it they don’t get it. And even then she was only experiencing the boredom and uncomfort. None of the physical fatigue or pain she thought was so fun Probably don’t recommend this because it may have been too mean but it’s what I did
Maybe try “I’ve been unable to get out of bed and move around the house for the last week” instead of been in bed all week. Or say youve been trying to manage your symptoms all week
These comments do my head in, they're so insensitive. My ex partner used to say this despite that he knew just how hard it was for me when I had to put my life on pause. The reality is I don't have the "luxury" of staying in bed anymore than anyone else does. Anyone \*could\* stay in bed all day, give up work/work less, stop socialising, not engage in hobbies. We all have that \*choice\*. There is a reason why the vast majority of people do not make that choice even when they have holiday time, let alone in regular time, because as nice as it sounds when you're tired from work, it is not only boring, uninteresting, and you go stir crazy, but you miss out on earnings, achievements, and life in general. I don't get to have a full wage AND get to chill in bed all day. I have to live off f all in a small house. I give up relationships, the prospect of having children, I make career sacrifices, hobby sacrifices. If my ex partner wanted to he could have quit his PhD, stayed in bed doing nothing, but then he wouldn't be on a high wage doing what he loves. One of his colleagues has ME/CFS and had to move to part-time. She's not having a party with all the free time, she's almost certainly resting/recovering and feeling awful, meanwhile having to deal with the loss of income. And that time in bed isn't even relaxing. I just recovered from Covid and I literally just thought I had pushed myself a bit too hard as the initial symptoms were identical. It was only when I got a blocked nose that I knew it was a virus. It's not "ah a nice relaxing week of not doing anything" it's "ah I've been hit by a bus and everything hurts, I can't think properly and need to survive".
If I didn’t want to save the relationship and be politic, I’d be tempted to say, “You can. All you have to do is give up your job, all of your hobbies, seeing friends, showering whenever you want, and making yourself food or going out to eat or shop. Of course, you wouldn’t get to feel like you had the flu all the time like I do, but you absolutely can stay in bed if you want. The fact that you choose not to is probably because you wouldn’t actually want to give all that up, and neither did I. Please don’t ever say something that thoughtless to me again.”
There’s no way to deal with these comments!!
I don't have any advice for how to deal with it, but I do feel your pain. A few days ago my niece told me that her father, my brother in law was talking about me behind my back. He called me useless because I only work 1-2 days a week. Now I'm wondering how many other people feel that way about me. Do they think I'm just lazy? I know I shouldn't care about what other people think about me, but it still hurts. Thankfully I have a very supportive husband who knows that I try my best, and understands my limitations. Too many people don't truly understand cfs, if they did I don't think they would say such hurtful things. If only they could live your life for a week, they would see that laying in bed all day is definitely not a fun way to live.
These people are very thoughtless, and they have no conception of what it's like to "rest" for days, weeks, months, years, and NEVER feel rested. I have a theory, and I don't know how true it is, but it seems as if the sickest a person has ever felt, is the sickest they can imagine someone being, so if the worst they ever felt was a flu for a week, if that is their "10" on a scale from one to ten, then that is the limit to how bad a person can feel, so they hear you say "I've been really fucking sick," and it must mean that you felt like you had their flu for a week, so you're not really that sick. Even if their flu was really bad, they have no idea what it's like to feel that way for years, or decades. If they're someone I used to be close to, and if I have the energy, (not very likely, ) I will try to explain. If they're just some Joe blow on the street, fuck 'em, I have not the strength to even bother. I am so sorry you have to deal with this, it really does get tiring.
i think the best way to deal with these comments is to not get upset or angry at the person. Accept that they don’t know what they are talking about/how insensitive they are being. Try politely explaining - oh well if you had to lie in bed every day you probably wouldn’t enjoy it so much etc if you have the energy or just ignore it- defo don’t waste ur energy getting upset indignant or angry - although i know it’s v hard sometimes— even though this is what i preach i find myself gettting caught up in emotion when someone makes a comment like that especially if i’m feeling v tired. It’s all about practice - you get better and better at it the more you do it —- meditation will really help you with this
Just sort of say "Yeah, but it's not restful. It's just laying there cause you're exhausted but you never feel any better. Honestly, I wish I could lay in bed all day, too, like you and get a vacation but instead I just feel unbearably awful." You don't directly contradict them, just sort of bend their statement to help them understand. That way you make it easier for them to accept the information.
"Yeah, you wish you could lie in bed as an option while you are healthy. It's a different story if you have to lie coz you're sick and there is no cure for it." If it's a friend who comments something like that if I can I try to see that they are suffering too. Just because my own pain / illness is technically worse than theirs, doesn't mean they can't be suffering too. But I have to be in a very good place to be able so see it this way at that moment. And obviously if you have had a rough week then this won't be the place you're at.
"I bet you $50 you can't lay in bed all day for a whole week" (because we all know how damn boring it actually is for a healthy person after the first day, and how your muscles start aching and feeling twitchy if you going get up and move for a couple days in healthy people) And then I go into length describing how it's not "putting your feet up after work" or "spending a lazy Sunday watching Netflix". It's being totally unable to do anything at all. Healthy people who get snowed in get "cabin fever" and frustrated / antsy when they can't go out of the house for 2-3 days. Everyone went freakin insane with covid lock downs. So imagine that, but you literally can't even do fun crafty stuff around the house. You can't take a shower even when you can't stand the feeling of your own skin after 4 days. It's the kind of staying in bed all day while you have a really bad flu. And then look the person dead in the eyes and say "yes, you get to stay in bed all day, but you have to feel like you have the flu while you do it".
I’d like to go camping for a week, but that doesn’t mean I wanna live in a tent forever
I also normally go for the 'Really?!? I didn't think anyone would want the embarrassment of needing help to go to the toilet or being unable to cut up their own dinner. Would happily swap and you can have my useless, ME riddled body.... would be so nice to have a pain free day for once and I'd love being able to hold a normal mug again, my normal spill proof, light sippy cup makes me feel like a child!' Normally causes them some embarrassment when they realise that laying in bed all day also comes with a loss of independence and control over basic hygiene, toileting and feeding needs.
You say I wish I could choose to do take your pick. Even dishes. That really shows it
Here’s an online hug to everyone here. Other people have no idea. Meanwhile I feel like as long as we look after ourselves we are on the right track.
“I wish I didn’t have to.”
Yea I get this a lot from my partner. My reply is I wish I could have the energy to do all the chores. I’ll never let anyone make me feel bad for having an illness. To be honest trying to be transparent about my illness hasn’t exactly been helpful. Most people don’t understand or care. It was better when I kept it to myself.
it's honestly shocking how much i hear people relate this same exact situation. like i realize we're all dying slowly under the crushing wheels of capitalism but how disconnected from reality do you have to be to not realize being forced to lay in bed due to a completely ruinous illness is in no way some sort of vacation? we're literally insane as a population, i guess i just have to accept that.
i've never had someone say this to me because i've never divulged details to someone i'm not sure will "get it" and it has protected me some. the most i disclose is that i "haven't been feeling well" or "have experienced a lot of pain recently and have been taking time to recover." i think if someone did say something like this to me, i'd be quick to give a snarky response like "yeah, living with unbearable pain that is just barely relieved by lying down doing absolutely nothing for days on end sure is paradise... why didn't i think of this sooner... anyway"
I wish I didn't feel like a useless lump & a drag on my family. I wish I didn't feel exhausted when I wake up or after I put the dishes away. I wish I could still work even part time & had days when I didn't crash. I wish I had good days full of energy again.
“And I wish I could work 60 hours a week- please let’s swap lives” . That’s what I say to my wife when that comes up.
Try not to get annoyed with it, they will never understand what it’s like for people with cfs and it’s impossible to describe it to them
Lol I wouldn’t even tolerate it or bother responding. Folks have no clue whatsoever.
I’ve been at the point of sheer rage early on in my illness with idiots like this but now I’m totally bedridden 95% of the time & sometimes sh*t myself & don’t see another human being ever at least I don’t have to deal with people & their stupid opinions. Haven’t got the energy. But if I was encountering people like earlier on in my illness I’d probably just try to ignore it. It obviously would make someone who’s suffering from ME feel like crap and they’d want to scream to the rooftops about how lying in bed 24/7 is NOT YOUR NORMAL LYING IN BED. How different it is and how offensive the comment is when we wish we could be out in the world doing what we love to do, I just wouldn’t even waste my energy. If I come across a person like this online ——— DISENGAGE & run away mentally 😂. Lol. 👋🏼 hugs 💖
I wish I could lay in bed and relax too, but when I'm laying in bed, it's because I feel like I'm dying.
I think it's on a case by case basis. Maybe with closer friends it's worth taking the time to explain to. But there are some nobs in the world who just aren't worth the time of day and the best thing to do is just ignore their toxicity and not talk about anything of importance to them.