For Fibromyalgia Awareness Day.
"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."
(via redshira, from a post here.)
In all the work I've done in all the years I've been ill, re-assessing my own standards for myself is one I still struggle with every day. I've come a long way in accepting my new normal, and adapting to living "in spite of my illness" instead of being sad or angry about not being able to live "how I used to," but it's not a static, or even a binary state.
New quirks in my illness (or annoying little brain weasels) pop up or reappear, and I need to deal with them, suss out new coping mechanisms. I'm constantly questioning, re-assessing, and subtly re-shaping each nuanced bit to make it fit into something that works for me in the here and now, not the me from five years ago, three years ago, or even 12 months ago.
I'd like to say I never have moments where I go, "damnit, it's just not fair!" but that wouldn't be realistic or true. It's moreso a matter of letting those moments happen, examining them, and saying "Unfortunately, no. It's not. So where to from here?" and moving forward.
"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."
(via redshira, from a post here.)
In all the work I've done in all the years I've been ill, re-assessing my own standards for myself is one I still struggle with every day. I've come a long way in accepting my new normal, and adapting to living "in spite of my illness" instead of being sad or angry about not being able to live "how I used to," but it's not a static, or even a binary state.
New quirks in my illness (or annoying little brain weasels) pop up or reappear, and I need to deal with them, suss out new coping mechanisms. I'm constantly questioning, re-assessing, and subtly re-shaping each nuanced bit to make it fit into something that works for me in the here and now, not the me from five years ago, three years ago, or even 12 months ago.
I'd like to say I never have moments where I go, "damnit, it's just not fair!" but that wouldn't be realistic or true. It's moreso a matter of letting those moments happen, examining them, and saying "Unfortunately, no. It's not. So where to from here?" and moving forward.