The Arthritis F-Words: Frustration, Fragility, And More
Glossaries and dictionaries are having a cultural moment, so it seems like the perfect time to review some F-words. Just like stubbing my toe or catching my thumb with the veggie peeler, arthritis can still catch me by surprise with anger, frustration, and sadness.
Sorry to disappoint, but this isn't going to be a profanity-laden screed against the injustice of this diabolical chronic illness. Maybe we can agree that swearing is implied in most conversations about living with spondyloarthritis and raise a glass in a reverse toast at our next conference?
Arthritis and I have been together for 19 years. That's the "Jade" anniversary, according to Hallmark. I had no idea! Part of me feels like it's time to be used to it, but that's nonsense. We know each other by now, up to a point, but Arthr and I continue to change with aging, disease progression, and whatever's happening in my life. He doesn't have a life. I decided that on my own, he just doesn't get to have one.
Pain, stiffness, and fatigue are always waiting to pop up to stop me trying to just live my life, but sometimes I make plans or set expectations. I know, it's an invitation to frustration with those tigers waiting to pounce out of the tall grass, but my life is happening, and plans and expectations are part of doing that.
Spondyloarthritis often hits during especially fragile times of life. That's young adulthood, middle age, or childhood. Young adulthood is a terrible time to develop a strange disease that nobody's ever heard of, but everybody knows what you should do about it. Patients are still highly vulnerable to the urge to please elders by entertaining their crackpot theories and pronouncements, and often lacking in resources to assert the autonomy needed to thrive. Arthritis can cause middle-aged patients to struggle to solidify the finances, relationships, and identities crucial to living out the rest of their lives.
Dictionaries refer to phantoms in terms of apparitions, specters, or illusions. Sometimes my life with arthritis feels haunted. I can still see all the things from my life before, but can't usually touch them. Going to grad school, having a family, or just doing something big and impressive aren't happening. That's why I've got to be careful with social media and you'll NEVER see me at reunions. That's where the (successful) control group is always on display. I get that some people are overselling or literally lying, but some of them aren't. And it's too much to come face to face with the other versions of myself. Yikes!
I'm not the only one that's been called dramatic, emotional, or a faker for expressing the disruptive impact of arthritis on my life. It's a hurtful attack on my character, no matter the motivation. This invalidation was my biggest motivation for entering advocacy and activism. The idea of a new batch of twenty-somethings sent out into the world without adequate support was intolerable.
What are your f-words?
Do you use the word disability to describe your AS?