Part of what it's like to live with chronic pain and exhaustion:

[shiraphant]

I do intend to make a happy post soon (about My First Holiday omg omg), but for now, some Thoughts I Thought.

Here's part of a conversation I'm having with puzzled_anwen:

me: I did washing up this morning. I did ten minutes of washing up and in that time I developed a lot of pain in my mid-back, my shoulders hated me, I felt sick, my womb began to cramp and I felt as though someone had punched me in the stomach repeatedly
all those pains gradually went away when I sat down
soooooooooo
after about twelve years, I finally started to believe - really believe - that I am not lazy, I could not do more around the house "if I just wanted to do it enough", I genuinely do have something wrong with me
I am not faking just in order to get out of doing housework.
anwen: arr, I know what you mean
it'd be nice if you were *sigh*
me: I can't believe it's taken me this long to believe it and I am sure I will be doubting myself again soon
anwen: yup
I do all the time
anwen: esp when I was mostly quite well last year I was all 'oh god, maybe I wasn't really that bad' even though, you know, I WAS BEING POISONED BY MY TABLETS

Having fibro/other invisible or otherwise unverifiable illnesses (including mental illness, with which I also have daily fun in several forms) means, for many of us, daily self-doubt and guilt on top of the judging and unhelpful assumptions made about us by other people - friends, family, doctors, random strangers. (We won't even get into the frustration and depression which come from being unable to have normal bloody lives with jobs and socialising and hobbies). Our brains, like so many clueless people, tell us we're not really that ill. We're faking to get attention/avoid having to do any work. We've "embraced the sick role", whatever the shit that means. We hear it so much from others that we believe it ourselves, and we hurt ourselves, we make ourselves more ill, trying to behave as if all that were true, as if our illnesses were the convenient fictions that so many people seem to think they are, and as if we could just choose to behave like healthy, able-bodied people and we'd magically be better. Unfortunately it does not work. No amount of wanting it to be that way will make it that way, and I did not - we did not - choose to have our bodies fail in this way.

If you're one of the people who didn't need to be told this - thank you for not making our lives harder and more painful. Thank you for believing us, because it's fucking rare when anyone does.

Comments

[kankurette.livejournal.com]

Although I'm not as ill as you and Anwen, I get a bit of this myself. I wrote recently on my LJ about a trip to London to see my brother, and Mum and me were walking around on the Underground and OK, we didn't go too far, but I was feeling dizzy and sick and in a lot of pain and had to sit down. And Mum had a go at me and said, "You're always ill, you're never well, do you expect me to be surprised, blah blah blah" and I know she was tired and all, but it hurt. A lot. Because I genuinely was ill and walking around a lot and not having any sleep breaks does that to me, not to mention I didn't have a proper lunch. And then at the office Christmas party last year, one of my colleagues made a crack about me being lazy, and it upset me somewhat as I wonder at times if she really does think like this.
I know I've had depression for years and it makes me tired, but before the CFS started, I was working full-time and going clubbing and stuff. I can't do that now. It's pretty fucking obvious there is SOMETHING WRONG.
I've never believed people with 'invisible illnesses' are faking it as one of my best friends has ME and I remember just how ill she was and all the shit she had to go through, but having CFS myself has really brought it home to me.

[redshira.livejournal.com]

Oh my god, please rest rest rest, never push yourself; you have CFS as a post-viral thing, yes? It makes me so angry that so many people are essentially pushed into permanent disability by the judgemental attitudes of people around them when if they'd just been allowed to get the rest they needed they might have been ok - or at least less ill on a long-term basis. I'm sorry your mum of all people is being unhelpful - do you think it would help to show her this?

[kankurette.livejournal.com]

Yeah, it is. There's not an official diagnosis yet but the doctor reckons I do have CFS, and I was not like this before the flu.
Mum is being a bit more OK now but I'm still cautious talking about it with her. I admit I'm absolutely fucking dreading the week my co-worker is off, because I have to cover for her, but if I'm lucky I might get to leave early. There are only so many hours I can do before my body gives up on me.