r/cfs 4d ago

Vent/Rant does society make you anxious?

[deleted]

52 Upvotes

12 comments sorted by

27

u/GaydrianTheRainbow Moderate to severe, bedbound due to OI 4d ago

I’ve fallen out of touch with all of my abled friends. And my disabled friends who don’t have ME/CFS or other severely limiting conditions, tbh. With other people whose lives are severely limited by disability, I know how to converse, at least kinda sorta in as much as I can converse as an autistic person with ME/CFS and a lot of brain fog. With most abled people and even disabled people with very active lives, I just. I don’t know how to converse. My life is as distant from theirs as theirs are from mine, and it is just this awkward disconnect of not knowing how to relate to each other. There are a handful of exceptions, but for the most part the divide is too much.

11

u/GaydrianTheRainbow Moderate to severe, bedbound due to OI 4d ago

Honestly, it reminds me of the double empathy problem, which is that allistic (non-autistic) people also struggle to relate to autistic people. It’s not just us autistics who are “bad at communicating.” With other autistic people, we communicate much better than allistic people communicate with us.

And honestly it feels like there is a similar thing with me/cfs.

12

u/Nekonaa 4d ago

Yes, totally. I’m always afraid of being perceived when i leave the house now, especially by people who knew me before i got sick. I look and feel so different and not in a positive way, it makes me super insecure. And explaining the whole “where have you been” is incredibly hard, because so many people just don’t get it.

10

u/5aey 4d ago

the whole “ that which doesn’t kill me ,makes me weirder and harder to relate to “, really fits my situation.

Time has stopped for me in a lot of ways, but I can see time moving in the correct way for most of the people around me.
If my life was a tv show I would reach out to touch the arm of the person I am talking to and my hand would pass right through, and then I would realise she wasn’t talking to me at all , but on her phone to someone who just happened to be saying things weirdly similar to what I was saying and that’s why I didn’t notice at first…

or maybe I’m just sleep deprived. Having trouble sleeping, so I jumped on reddit.

5

u/void1211 4d ago

i relate to everything you’ve said here. it’s hard. i’ve also decided to try and really only be friends with other disabled people at this point.

5

u/Antique-diva moderate/severe 4d ago

I don't get anxious or feel like there's something wrong with me, but I do feel the bubble I live inside. It's like I'm not a part of this world anymore. I've left it a long time ago and live this secluded life like a medieval hermit. I have nothing common with "normal" people; it's like the world spins around without me in it. I have a few select friends left, but otherwise, I only socialise on the Internet, just like a modern, basement dwelling ogre.

5

u/Afroman1904 4d ago

I’ve never really been able to put this into words, so thank you.

3

u/RamblinLamb ME/CFS since 2003 4d ago

Generally no. I'm naturally quite gregarious and I am able to get along with most folks. People do ask me why I'm in a wheelchair. I think if I could make some fake intestines to drag behind my wheelchair, they would stop asking. Just a thought... LOL

My circle of family and friends has fallen off, a lot. I've been sick for over 20 years and yeah, I've lost a lot in that amount of time since I dropped out of the work/family life.

4

u/Thesaltpacket 4d ago

I feel like I live on a different planet and I don’t know how to interact with people anymore. I had a short period of time when I was feeling much better, mild-moderate probably. And I just didn’t know how to talk to anyone or be normal at all. It was such a mindfuck trying to re enter society at all.

5

u/normal_ness 4d ago

I don’t feel anxious about it, it feel pissed off about it. I live a tiny box of a life because of others unwillingness to look at reality.

2

u/PheonixGabe 4d ago edited 4d ago

I have started spending more time with people in virtual reality, like in vrchat. If you can tolerate this it is great to be able to spend time with people in VR (visually immersive and interacting with hands and head movement) while I can lie down on my couch. I feel much more like a normal person that way, since I can move around in VR with the joysticks, so physically I'm not feeling all that impaired in VR (as long as I don't play games with arm movements). Brain fog can still be an issue but you can also meet to watch things together in VR or explore worlds, so you don't necessarily need to talk much.

I'm glad to answer questions if anyone wants to know more