I dislike ableism. It bothers me how subversive it is, and I seriously dislike how people around you can say things that are ableist and they don’t get how ableist that statement is. It’s awful. What bothers me the most is how insensitive statements over the years can build up and lead to internalized ableism.
I’ve always struggled with internalized ableism. After years and years of people telling me I’m faking, I’m “too young”, or that I “look fine”/”don’t look sick”, and other ableist statements, it’s done a number on me. I recognize it in myself and I try not to do it to myself but it happens. I can tell others all day that they need to take care of themselves, ignore ignorant statements, but can I do it for myself?
I question myself and wonder if I’m really sick. I was able to go the store one day this week, but today I have a headache and my tender points are bothering me. In moments like these, I’ll admit that I am sick. Yet for some reason, my thoughts race that I’m “healthy” when I’m feeling okay as if the good days negate the bad. Internalized ableism strikes and strikes hard. It’ll manifest itself in me trying to prove how not sick I am to people who don’t know I’m sick (and sometimes even to people who know I’m sick). So what do I do about it? Well, I try my hardest to tell it to go away.
It’s hard. It’s really hard. Lately, I’ve been looking into filing for Medicaid, disability, and disability student loan forgiveness since these are all things I’m presently hoping to obtain to make my future with these illnesses a little more manageable. My mind decided it would be a good time to ask me “Are you really sick? Are you really disabled?” I finally countered my brain with, “Yes, I really am sick and disabled”. I’m constantly having to tell this to myself, and it’s terrible. People’s comments shouldn’t have impacted me this way.
Both lupus and fibromyalgia are real and they aren’t curable. There are ableist notions that diet, exercise, and other things can cure it, but I’ve tried everything and it’s not changed the fact that it can’t be cured. Working full-time isn’t possible, and when I worked part time I only did max 12 hours a week and that was often hard. (See even here I’m explaining my ability to work a little as if that proves I’m “not sick”). Plus some symptoms I’ve experienced and my hypermobility, things are pointing toward the possibility of me also having Ehlers Danlos Syndrome. If that’s the case, that is also real and not curable. I have to fight my own mind with the facts and tell my brain to leave me alone.
I am sick.
The internalized ableism has made it awful for me to take care of my health. Thanks to this, I’m always overdoing it trying to prove how “healthy” I am. Even when I’m in pain, I avoid parking in handicap spots despite having a placard, because I’m concerned about judgment because I “don’t look sick” and obviously I must be “faking”. I don’t admit my reality to myself. But that’s slowly changing. Towards the end of last year, but mostly into this year, I’ve drawn a line. If I’m not feeling up for something, if I’m in pain, if I’m exhausted, I’ve said ‘no’ to hanging with friends to doing things.
One example is when my friend was going to pick me up, and we were going to check out a store we like that’s headed out of business. She ended up running about an hour late waiting for her family, and I ended up not going. Why? While I was waiting, fibro made me feel as though my battery had run out. I apologized, and she was understanding, and I felt better for it. I didn’t end up pushing myself, and I think I was able to get past the flare faster.
I’m still working on this, but I have to ask: How do you deal with internalized ableism?