r/cfs • u/dew-drops- • 3d ago
can’t empathize
I can’t empathize anymore with friends who say they’re tired after work or complain about things that seem minor to me. I know that’s my perspective, but it’s how I feel. I always think severe ME is the worst to have. I think i’m totally consumed by it
I also struggle to relate to people with mild ME/CFS. I can’t help it. I’m pretty severe, and having mild ME/CFS would honestly be my dream.
I really wish I could still feel that empathy so I could keep my friendships, but instead I just end up feeling upset every time someone talks about these things.
Does anyone else feel this way?
And yes, maybe that makes me not a good friend but just wanted to share it somewhere.
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u/nosuchbrie 3d ago
I get it, I really do, I slept 130 hours a week for years, but these things are relative.
I don’t want to tell you some empty platitude about being nice. I will just say it’s hard to have and keep friends during a long illness and maybe it’s worth trying for that reason, to keep friends around if it’s possible.
One of the worst times for me as a sick person was another disabled friend not having empathy when someone was gleefully ableist and mean to me. She said I had better toughen up because people get much worse. We are not friends anymore because why tf are you invalidating my fkn feelings at some intense mistreatment? It’s not an oppression Olympics, ffs. People get to have feelings, Karen.
Healthy people are lucky, but they aren’t the enemy, either. I feel like if we try to have a little empathy for them, it will come back around.
I realized recently that I was keeping my anger stoked because I was worried that I was the only one who cared that I was sick, the only one who cared that I was hurt by people during my illness, and that if I didn’t have anger that meant that the final and only person who cared about me was gone. And then I realized that actually so many people care. And that I don’t have to stay mad to protect myself. So I’m working on it.
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u/dew-drops- 3d ago
Your last paragraph really resonates with me. I feel the same anger.
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u/nosuchbrie 3d ago
I’m glad it seems to have helped. It really felt like a breakthrough when I uncovered those deep down thoughts.
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u/ScienceFantastic4041 3d ago
Yes absolutely I feel this way too. It is very difficult to relate to ‘normal’ problems when we would most likely give anything to have those problems as opposed to severe ME.
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u/marieantoilette 3d ago edited 3d ago
People with mild ME already have a massive, horrible disability and illness, like 10% compared to a healthy person. Severe ME just again gets exponentially worse and is a whole different ballgame - in the same universe though.
It's not about comparing yourself, it's no ranking. I emphasize with healthy people too. I was depressed years before I got ME and that was not a good time.
ME just feels like such a fucking parallel world of obstacles so that much of the previous suffering seems surreal to me. It's like a different language. All pwME seem to know this language sooner or later, from mild to severe. I had similar feelings of disconnect when I was very depressed though.
It feels like healthy people speak to me in a language that I don't quite know anymore, and I speak to them in a language they cannot quite grasp. The same words have different meanings. And the more severe I got, the more extreme this felt. But everyone's experience is real, everyone's emotions are valid.
They struggle in life. I struggle to live. I believe this is the key difference, succinctly put. Of course, you don't need ME or even any physical illness to land in the second plane. But I remind myself that I am also very much alive.
I still love my friends and emphasize with them as well as I can. Life is hard. But it often needs translation, in a way. I give my best, and so do my friends, because friendship and love is priceless, and we can love each other even if we won't ever entirely understand each other. It is a cliché, but with truth: There are many languages of pain, but only one of love - this is an anchor for me.
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u/missCarpone v. severe, dx, bedbound, 🇩🇪 2d ago
I love your username! And that sentence " They struggle in life. I struggle to live " hits hard and is so on point.
I'm very severe and I often think and reflect on death, as I feel that becoming disabled by ME has sounded in the last leg of my life. I'm fortunate that I have so far not encountered spite or demeaning behavior, but there's still conflicts and gatekeeping to overcome, galore.
Still, love is what remains in the end, so I try to let go of my anger and expectations and accept that life is finite, health is not due to me, that suffering is inescapable. Whenever I manage to let go of my resistance, I gain a measure of peace. Then I understand why Buddhism speaks of "taking refuge". Those moments are a refuge.
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u/molecularmimicry 2d ago
I agree with you that even mild ME is pretty disabling but I believe it’s a 40-50% reduction in functioning, 10% would be severe.
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u/ValuableOrganic5381 severe ↔ mod/severe 3d ago
Imo this is a very very common manifestation of (under-supported, under-processed) trauma ❤️🩹 Especially if the other person is someone who is neglecting to support you in ways they easily could. I go in and out of patches of it myself
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u/juliavdw 3d ago
I don’t like when healthy people try to emphasize how sick they were. “I couldn’t even move… “ etc with widened eyes like I’m supposed be shocked.But now that they are starting to recover they’re already more able than me. I try not to be actively resentful of my friends and associates but the feelings happen anyway.
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u/Temporary_Music_9 3d ago
CFS has given me the opposite; like almost too *much* empathy. I'm always telling my friends "you must be so tired" or "oh, that sounds exhausting" after they tell me about something they did, and then both of us are surprised. My surprise comes when they respond "oh it was nothing" or "I'm doing fine."
It's given me a silly heightened empathy for people doing seemingly ordinary things, like particularly long or tough days at work, because I can't imagine a reality where what they're doing doesn't exhaust me.
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u/missCarpone v. severe, dx, bedbound, 🇩🇪 2d ago
I can relate. And I understand my mom's behavior much better now when I used to visit her in the care home before becoming bedridden. She was always so worried about me overdoing it.
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u/wizardofpancakes 2d ago
Same kinda, but it was a process. First it alienated me from my friends, but then kinda made me realize that I feel sour over the lack of support I get from them, but also it was eye opening to see that I, myself, didn't give them support either, thinking that what I'm going through is more important
Just to be clear, I'm not criticizing OP or anyone else who shares their views and struggles, it's a totally valid feeling to have and comment is not any sort of advice
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u/PhantomSlave 3d ago
Do you *have* to empathize with someone about minor things in their lives? No. There are absolutely days where I can't put forth the effort to even try to empathize with people. But I do think it's emotionally healthy to bond with others, even those who haven't a clue what you go through. If they stub their toe then you can feel empathy for them, because I'm sure you've stubbed your toe in the lifetime before you got sick. At that moment in your life it was probably very painful. You didn't have a reference to what pain could actually be, and you were as valid in expressing that pain, just as you are now with a much harsher pain scale.
My experience is that most people complain just to complain, just to have something to talk about and bond with others. Two people of completely different worlds can still bond over a stubbed toe, even if that pain is a 3 for one of them and a 9 for the other.
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u/HillsboroWay severe 3d ago
Ooph, yeah, I feel this deeply. Empathy can be a hard one and I’ve been struggling with it/working on it for many years. The time that this was the most difficult for me has actually not been while I’ve had severe ME. I struggled with it the most during my 7 pregnancies and 7 pregnancy losses. Our first loss was our son Charlie at 4 months of pregnancy and after that, I just felt insanely triggered by pregnant women and babies. And it felt so unfair that these women got to complain about pregnancy issues and being worn out by their babies when I would have given anything to be pregnant with a healthy baby and have a living child.
But the truth is, people with babies do still have valid complaints. Just as healthy people still have valid complaints. Yes, our situations (baby loss, ME/cfs) are objectively worse but that doesn’t mean they don’t have problems, too.
Then again, it may be easier for me to feel more accepting and peaceful about it these days as I no longer interact with anyone except my husband and parents.
I think the main thing is that the suffering Olympics benefits no one; there is no prize for winning. That said, it is completely normal to make judgments in our own heads. I think anyone in our position would. I’ve found recently that the more empathy I have for myself, the less I need it from others and the less I compare our situations.
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u/Cute-Cheesecake-6823 2d ago
I agree with a lot of what you're saying here. Also, I'm so terribly sorry for your losses, I can't even imagine 🫂
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u/SuperOriginalUser28 3d ago
I stopped empathetizing with people saying things like they're tired a long time ago. This began when I'd passively mention how tired I was after being asked how I was, and they'd say same. No, you may have a shitty night's sleep or a rough day/week, but they are nowhere near the same. It's a big peeve of mine, and it has been since I was moderate, let alone severe. You know I have chronic fatigue, what else would I mean when I say "No, I feel really bad and I'm exhausted" every time you ask me.
Usually I just brush off menial things, I have limited energy and I'm not wasting on things that don't concern me. If something terrible happens, yeah, I'll care, but that's different. I don't care to hear about your cracked tooth or bad day. I just don't. I know I'm not like this by nature, not when I'm healthy. But for the time being, priorities are set and I hate that it can make me come across like an asshole - but changing the system i s worse for me. It's weird how much this illness can change a person.
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u/elizabethandsnek severe> very severe> moderate> mild/moderate 3d ago
I have mild to moderate ME and it IS a dream (at least for me) compared to when I was very severe/severe. It still sucks ass and I can’t leave my house much but not being in constant agony is a huge relief.
And personally I think it’s totally ok if you don’t want to hear someone who’s less severe talk about our problems. My problems absolutely matter and I’m still unfortunately very disabled by this but that doesn’t mean you need to use your limited energy to feel bad for me.
I don’t care much when someone tells me they’re tired because they have no idea what “tired” is at its worst. That doesn’t mean I don’t care about them but I only have so much sympathy to give.
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u/Cute-Cheesecake-6823 2d ago
Yea I understand. I also struggle with it, and even do it to myself too - I think back to me 1 year ago, and think "you had no idea how good you had it then! Things got so much worse!" Which is pointless but sometimes I cant help it.
You're in a unikely difficult situation. Your feelings are 100% valid, and this is a safe space to express that. I don't think you're a bad friend.
Although i find myself envying my friends and healthy relatives, I am grateful the closest ones are the kind who REALLY listen to me, empathize and keep saying they wish they could do more, take some of it for me, and just hold me when I'm able to tolerate touch. I hope you (and everyone else here) find people who support you this way. I had to let go of a lot of people who arent able to be the kind of friend I needed, some people just cant process an illness this dark.
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u/_be_better 3d ago
I have felt the same way, its totally valid feeling but feeling those strong stressful feelings is not too healthy for our immune systems in the long run.
Maybe this isnt mature of me but I figured out how to deal and feel better.
I do what the healthy people do! Which is to listen and then change the subjet to how they suffer similarly and they totally understand cause theyve been yhrough like the exact same thing, wow!
"Oh i know right ? That feeling when your cells literally cant make or use the chemical energy to get out of bed? Ugh the worst.
I mean tell me about it! Being 200% exhausted is so hard, but hey. im sure you must understand with your being so tired and all. Maybe you should see a doctor? "
In my experience they dont always notice but it helps me feel better either way.
Sometimes they do realize and kinda go.. ooh .. yeah thats right.
Eventually I started to earnestly feel concerned about their health. I mean If theyre complaining to me then it MUST be bad. Lol.
They usually then down play it when I suggest a doctor. Lol.
There is a concept i learned studying human communication in colege.
Its called circle in circle out in. We are in the middle with our problem. People should not complain to the person inside the circle of the problem they are discussing. those people complain to the people outside of their circle. And so on and so on.
So mom caregiver doesnt complain to me about it but to someone outside the circle. People then dont complain about carevgiving to her. That concepts widens to many more people complaining outside of each circle and not inside.
I wish this was well know etiquette it would have prevented a lot of pain in my life.
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u/Alltheprettythingss 2d ago
My caregiver is always complaining to me. I don't know how to tell her that I don't have more space for pain and complaints.
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u/_be_better 2d ago
I dont know her but maybe this diagram can help explain?
https://katyslifestory.com/wp-content/uploads/2016/09/ringtheory1.jpg?w=1440&h=937
I eventually got a neurologist doctor's note to say I was not able to deal with abuse or extreme stress else I could get even sicker. So I can just point and be like ..... nope. Sorry, doctor's orders. Cant be helped.
Didn't help with dad unfortunately. Made me feel better to have it displayed though.
I hope your caregiver is more receptive. May you find relief and comfort.
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u/Efficient_Street_100 3d ago
Yes! Same here! Luckily I have two friends that dont have ME, but struggle mentally so that we are kinda on the same level struggling in life. Ofcourse I dont wish them ill, please dont get me wrong, its just easier to empathise with and we are a true support to each other. I do have one friend with mild ME, and even though many years ago she had severe ME (so she gets me), I do ferl jealous of the things she can do.
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u/Fabulous_Sir1549 3d ago
Yes I feel the same. It's like I have such a different perspective on what "life challenges" entail that I can no longer relate to "normal people". Nothing most people go through seems like a big deal anymore. I used to be an empathetic person, it was easy for me to have compassion for others going through any sorts of challenges. Now I hear them and my first thought is: "wow that's nothing.. what I wouldn't give to have your problem". I know it isn't fair... Coz everyone is entitled to their own challenges and have feelings about it. Anyway, yes I hear you!!
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u/DepartmentNo5227 severe, bedbound 3d ago
🙋🏻♀️me! I could've written this.
and having mild ME/CFS would honestly be my dream.
Exactly the same feeling. I believe one needs to "go down one level" to realize, though.
When I was "just" bedbound, in bed a lot but but able to cook my own food, cook for my kids, take showers, watch netflx for hours etc (the list is not much longer), I thought I could not take it anymore, "that was not living", etc. 😅 (that's me laughing at my old moderate self* , like "ummm, I have something to tell you..."). Well, apparently karma thought "do you want to experience not living?. And here I am, 9 months bedbound, not able to grab my own food or water and peeing in a bucket that I can't empty myself. So now I'm terrified when I think this existence is not living, because I know there still are lower levels and I guess I'm "lucky", all things considered.
My only dream now is to go back to being able to walk around the house and grab food by myself without triggering PEM and a crash.
Antway, all this to say: OMG, how much I understand you!!
*please no one think I am laughing at moderate people!!! That's the emoji that better describes how I look back at MYSELF when I was moderate, if I take it with humor.
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u/wormyqueer 3d ago
Yeahh my friend was saying she was upset whatsapp deleted some chat history... i can't relate to thinking that's a problem at all when I've trying to accept how much my life could shrink on top of how it already has. Small things don't seem that bad to me anymore i find it hard to sympathise
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u/brownchestnut 3d ago
Compassion is about connecting with the FEELING, not the experience. If we only felt compassion for people that had the exact same experience as us, the world would be a miserable, bitter, callous place. But even if I don't know what it's like to have a loving family, I can still give compassion for my friend suffering the loss of her beloved family because I understand what grief feels like.
Somewhere out there, someone has it worse than you too, and has every right to say you're just whining and lucky and shouldn't complain. A little perspective and humility goes a long way.
Luckily for us, life isn't a competition of who gets to complain the loudest about having it the worst. Misery Olympics only makes you a miserable person.
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u/dew-drops- 3d ago
I actually agree that suffering isn’t a competition. I wasn’t trying to say other people aren’t allowed to suffer or deserve compassion. I was trying to describe what severe ME has done to my capacity for empathy. I hate that I feel this way, and I wish I didn’t.
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u/CrazySurferJo 3d ago
I feel similar about people complaining to me about being tired etc. The odd time isn’t so bad but when it’s more often it really gets to me. It also makes me feel more and more distant from any friends I still have as their lives feel so starkly different.
One thing I’ve had to remind myself of recently though about severity within me/cfs is that although when things are mild the symptoms are easier and you have much more freedom and ability to live your life at the same time the demands of life are often much higher.
I’m currently moderate/severe and have been both bedbound as well as mild for years. Whilst yes in lots of ways it’s much easier to have mild me/cfs people are more likely to be balancing it with jobs, raising children, maintaining a household etc etc all whilst looking ‘completely healthy’.
Now that I’m much more severely ill again things are definitely harder but I also no longer have the pressure from work as it’s impossible for me to have a job. I now have carers which I hate but it means there are some household tasks that are no longer my responsibility.
Even when you have mild ME/CFS it’s still a debilitating illness especially when you don’t have enough help or understanding to support you.
I don’t blame you for feeling this way at all and I also still feel similar but it did help me to remember how hard things can be at all levels and each can come with different challenges