Just thinking about the common experience of late diagnosed disabled people of āthe normal amount of pain is noneā and how weāre just supposed to know that despite *some* level of pain being OUR normal for our entire lives, even if itās usually not super bad itās just always there.
Thinking about how, when I told my mother this, she asked me āSo whatās hurt?ā Which is very different than āwhat hurts?ā
I looked at her, confused. āNothing is hurt. I just hurt.ā
And she says āBut where do you hurt?ā
āWell, right now itās my stomach and my ankles-ā
She cuts me off. āSo you twisted your ankle?ā
āNo,ā I say. āMy ankles just hurt. Iāve been walking today.ā
Now itās her turn to look confused. āJust walking doesnāt make your ankles hurt. You must have sprained them or something.ā
But I shake my head. āNope. This just happens on days when I walk more than a little bit. My ankles hurt first, then my knees by lunch time. And if I donāt take a nap and stay on my feet all day, my hips will be hurting too.ā
āOh.ā
Joint pain is my normal. Sometimes, if I barely walk all day, the ache in my ankles is barely noticeable and doesnāt affect my functioning because Iām used to it. If I do what most able-bodied people would consider to be a ānormalā amount of walking, almost all of my joints will hurt by supper. If I have to wash dishes or run any errands, Iāll hurt so bad I canāt walk for the rest of the day.
Then thereās the chronic migraine attacks. I used to have them multiple times a week as a child, and no matter how I explained myself, nobody ever understood that they werenāt just headaches. I experienced those too, and frequently, but they were not the same. Thankfully, at the age of eleven, I found an article explaining migraine triggers. I was able to identify a few of my own triggers, and the frequency of my migraine attacks reduced to maybe a couple a month. For a few years I was basically on cloud nine, Iād never experienced such a lack of pain before and it was so freeing. Unfortunately, migraine is a progressive condition, so the attacks have gotten more frequent over the years.
And then thereās the ārandomā pains. Some mornings I wake up and my stomach hurts. Or my chest. Or my back. These are just things I have to live with, because my bodyās connective tissue is⦠well, for lack of a better word, faulty. And I never knew that other people didnāt experience this, because how could I? We never talked about it. Sometimes Iād hear people complain about back aches and just assume they were like mine. Of course, I knew that injuring yourself could cause muscle aches, obviously. But I just assumed that *most* of the time, other peoples bodies hurt like mine did. I didnāt realize that humans arenāt supposed to ājust hurtā without a connected incident.
And when I try to explain this to able bodied people, their response is always the same. āWell, everyoneās back hurts sometimes.ā āEverybody gets headaches sometimes.ā āYouāre not special just because youāre too lazy to walk. I still go to work when I donāt feel good.ā And no matter how many times I try to say that No, you donāt get it, I *always* hurt, they still brush me off and dismiss me.










