It can’t be helped, but I’ve done a lot of failing expectations in my life with rheumatoid arthritis. While I’ve worked hard to make a good life for myself and am proud of that, it’s the ways in which my body has failed that weigh on me at times.
Reflecting on failure during childhood
I think about the drugs that I took as a child that didn’t work. But then (and even somewhat now) I don’t think of it as old drugs that were discarded because they didn’t help enough RA patients. Instead, I think of my body as failing to respond to treatment — like it was my fault instead of the drug.
As a kid, I remember that I wanted so much to get better. I’d wish on the stars out my window at night that the medicine would work, that my exercises would help, that the RA would go away. I was trying to will my body to be something else. It wasn’t just about me. I wanted to be better for my family too, so that I wouldn’t drag them down with my illness. I felt like I was failing them, but I was powerless to change my circumstances.
Failure to respond to current treatment
Now I am again struggling with a failed medication as an adult and it is making me reflect on the many treatments over the years that didn’t work or petered out. Some drugs I’m not sure ever worked, but it was what was offered at the time. Others seemed to work, then stopped. Still others I thought worked until I got my blood test results and realized it was just the hopefulness in my head.
I have this joke that my RA has glimpsed a drug and just laughs at it with a sneer. “Hah!” it says. “That drug isn’t gonna cut it!”
Feelings of failure with exercise
While I know that exercise and physical activity is important for staving off damage from RA, I also know that it hasn’t been hugely helpful in improving my condition. Over the years I’ve slowly gained more damage and lost function. I do my exercise because it helps me to feel better, but it hasn’t stopped (or even slowed) my disease. It often feels like another failure. My mind asks: what if I had exercised more or better? Would I still have RA?
These feelings of failure are from the evil RA troll that lives in my brain and whispers in my ear. It’s the creature that doesn’t recognize that I did all I could, but that I just have a really difficult disease. It places blame on me even though I clearly have a severe illness that cannot be easily stopped.
Living my life against all odds
So while I feel the dread of failing expectations, I really haven’t. If you turn the story over, I can see how well I have done despite extremely challenging circumstances. I achieved my childhood goal of going to college, finding a job, and living independently. I’ve traveled and lived. I had the great fortune of meeting and marrying my husband.
From this perspective, I can realize that I’ve actually upended all expectations—not failed them. I have a fulfilling life with people I care about, a home I love, and a job that I enjoy despite a severe chronic illness and disabilities. I haven’t “failed RA.” Instead, I’ve made a life to be proud of with the added difficulties that come with fighting an illness, managing the damage, and coping with unruly side effects.
People who don’t know me may pity me or feel sorry for me. They may think my life is small and limited by the RA. But their expectations are low and their imaginations limited. I am proud to have failed their expectations.
On average, how many times per month do you (or your caretaker) go to the pharmacy?
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