We Are More Than Just RA, We Are People With Lives
Guess what? Chronically ill and disabled people have lives.
Gasp! It’s true! We drink milk and we date, and we stub our toes at night and curse the very universe we live in. I know it’s easy to forget when you see articles here about the symptoms we battle, the ordeals we go through, and the stress we endure, but people who suffer from rheumatoid arthritis (RA) and other diseases have lives outside their illnesses. In fact, some would say the reason why RA and other debilitating chronic illnesses are so stressful is because it keeps us from those lives so often.
A scathing review of my autobiography
You might be wondering why I would bring this up on a website that is mainly dedicated to helping others cope with their RA, making them feel less alone, and educating everyone about what RA and other similar illnesses do to a person. Well, I’ll tell you – it’s because someone took time out of their day to email me an unsolicited review of my autobiography about my life with RA, and it was fairly scathing. Let me share a little bit with you:
“If you took the time you spent talking about dating and finding a partner and used it to talk about your illness more and list symptoms, etc., it would have been better.”
“I got sick of reading about your libido [in an autobiography about my life] and just wanted you to list potential side effects and dangers of living with rheumatoid arthritis.”
“If I wanted to read a story about someone’s life, I would have gotten a more interesting one – I bought this book to learn about rheumatoid arthritis only.” [Again, this is an autobiography, which is clearly stated on the book jacket.]
These are just several excerpts from the masterpiece of a review this individual took upon themselves to email me, and I think it highlights a widespread problem in the RA and disability world.
We have to fight to be seen as whole humans
People look at us and think we are simply our diagnoses and nothing else, and not only is that extremely insulting, but it’s also disappointing – people who suffer with RA and other chronic illnesses are some of the most interesting and empathetic people you will ever meet. I know because I talk to tons of them.
Assuming people are simply the sum of their illnesses is nothing new; it’s been going on for years, and having a so-called “invisible illness” like rheumatoid arthritis only complicates the issue.
Depending on the day, you either have to explain why you are parking in the handicapped spot to a stranger or worry that you won’t be able to park in the spot when you really need it, but I digress – people with chronic illnesses like RA and other disabilities have to fight daily to be seen as whole humans and fully autonomous individuals with their own agency (surely not!), and sometimes we lose that battle.
All anyone sees when they look at us is our illness
It can be something as simple as talking to someone in a wheelchair’s abled-bodied partner instead of the person with RA themselves, but even little things like that reinforce the stereotype that people with chronic illness and disability don’t have lives outside of their diagnosis.
Ironically, it’s one of the reasons I included so many normal, everyday details in my autobiography – to show people that we aren’t so different after all, and we experience the same life stressors and mundane issues that any able-bodied person might. We have hobbies, we like to go out to eat, and we are looking for someone to share this absurd journey we call “life” with. All things that anyone who doesn’t have rheumatoid arthritis or another disability would experience – but for some reason, all that anyone sees when they look at us is our illness.
Harmful assumptions about experiences with RA
Yes, I’ve heard all the excuses. “Well, you are always talking about your RA, so I just assumed it’s all you care about.” “You are always using your RA as an excuse for not coming, so I just assumed it’s always front and center in your life.” “You always say your RA keeps you from being in a relationship, so I just assumed everything is about that.”
Hmmm, can you spot what all of those excuses have in common? Hint – it makes an ass out of “u” and me. Yeah, “assumed.” I don’t have to remind you what happens when you assume.
Yes, our RA or other chronic illnesses do unapologetically snake their way into every part of our lives, but that doesn’t mean we literally sit around all day and just talk about RA like Bubba in Forrest Gump and his preternatural obsession with shrimp dishes. RA psoriasis, RA swelling, fever with RA...
We are humans with lives outside of RA
My autobiography tells a story about my life with RA; it doesn’t tell the story of a prince in a far-off kingdom named Rheumatoid Arthritis, who came to life one day in a 9-year-old boy who liked to play Legos and catch crabs at his grandparents' and then took his life over completely.
We live lives despite our illnesses, and yes, sometimes and maybe even a lot of times, our RA makes that difficult, but that doesn’t mean we still don’t have lives outside of our diseases. We do, and we like to share the details just the same as any able-bodied person out there. Some of us even like to gossip! Not me, of course. (Have you heard about Susie?)
So, if I was to respond to my anonymous review emailer, I’d say if you want to read about the clinical side of rheumatoid arthritis, buy a medical textbook, but if you want to read about an actual human being’s life lived with RA, even despite RA, then my autobiography is a good place to start. Talk soon.
On average, how many times per month do you (or your caretaker) go to the pharmacy?
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