File 0058: Chronic Illness, the Invisible Monster: RD
February 2nd is Rheumatic Disease (previously known as Rheumatoid Arthritis) awareness day, a disorder very close to the hearts of our hosts, particularly Courtney. In this episode, Courtney tells the story of how she got her diagnosis and the struggles and victories she's encountered when trying to get treatment and support for her disorder.
To learn more about RD please visit: https://www.arthritis.org/diseases/rheumatoid-arthritis
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I'm going to start by asking you all to stick with me on this. It's going to seem disjointed and convoluted and like it doesn't have anything to do with today's topic, but I promise we'll get there together.
This started 12 years ago, when I was 21. I worked nights, and on my way home one Alaskan summer night, I was hit by a drunk driver. I survived ( obviously) with no obvious damage, but I had been concussed, was in shock, and my car was totaled. The trooper who arrived on scene had thought I was DOA.
It took me a month to get my life sort-of back to normal (replace my car, shake off the anxiety of driving again, learn to ask my parents for help with things), and by then the State Fair was up and running and my work asked me to work days and help run our company booth.
I was spending a lot of time standing on concrete floors instead of sitting at my comfy desk, and after the first few days I started to notice pain in my hips. The pain got so bad that I could barely walk, and had to get to work 10 minutes early just to make it inside.
I kept telling myself it was just from the floors of the fair grounds and because I had worn cheap shoes. Eventually the pain went away, and I was back to normal. Until it started to show up in my hands. A feeling like shards of glass had replaced my bones and joints any time I touched something, bent my fingers, tried to turn the keys in the ignition.
I pushed it off again, convinced it was just from overwork at the computer. Until I had dinner with my parents that December and when we went to say grace and my brother grabbed my hand enthusiastically and I felt like I had broken every bone and burst into tears. My parents asked what's wrong and I said "I've been working on computers and gaming too much, it's over use, maybe carpal tunnel". My mom looked me in the eyes and said "you know it's not".
She was right. I got the diagnosis that next month; just like my mom, I had rheumatoid arthritis. Just like my mom, I would be dependent on medications for the rest of my life. Just like my mom, I would have to plan my entire life around my medication schedule, my doctor appointments, blood draws, and an unpredictable, nasty chronic condition. I had just turned 22.
Courtney's favorite disability advocates
- Tinu - @tinu
- Dawn M Gibson - @DawnMGibson
- Chronic Pain - @chronicpaintv
- Disabled_Eliza - @disabledeliza
- Imani Barbarin - @Imani_Barbarin