A day filled with misconceptions about Rheumatoid Arthritis / Disease
I wrote this post weeks ago when it had just happened. I imagined responses that to misconceptions about rheumatoid arthritis are usually held back in polite conversation. Am I the only one who does that? What if it were a game show…
It was a day filled with misconceptions about RA, and it really bothered me; but I didn’t figure out why until this morning. I hate being misunderstood and when it’s about RA, it bothers me more because I feel like I’m judged as a failure, a bad mother, an un-giving person, lazy, or dishonest. Just once, it can make me feel like I got kicked in the gut. Yesterday, I had that experience repeatedly.
Katie Beth and I were discussing a brief encounter with a doctor and we started laughing about how great it could be if I could put the truth of all of this into the book called it Is That Your Final Answer? Then we started laughing about how some game show lines fit life with RA. Laughing always helps.
But the day was much longer, and in the evening, I was finally at home in bed with a sheet over my head, in too much emotional pain to write and too much physical pain to do anything else.
Do you ever have these encounters where you know someone completely misunderstands? Do you just let it go unanswered, for whatever reason? I’m trying to come up with answers I could have used that day – unspoken answers to misconceptions?
Vignette 1: Is that your final answer?
Nurse: “My best friend has RA, but she doesn’t take any of these medicines.”
Me: “Does it disable her? That helps people decide. I mean when I went on the drugs, I couldn’t put my arms up at all to -”
Nurse: “She has no choice. She is a single mom. She works and does everything for him in spite of RA because she puts him first. He’s in high school, but she wants him to have everything… (5 minutes more)”
Answer UNSPOKEN: “People with RA really do get to a point when they can’t do some things. We still put our children first. It’s not our choice to have a disability either.”
Vignette 2: You are the weakest link
Doc: “Twenty percent of women with inflammatory arthritis actually have a chronic pain syndrome instead of active disease. It’s just pain, right?”
Me: “No, my joints are also stiff, swollen, grinding, weaken –”
Doc: “But how much do you exercise?”
Me: “Well I do as much as I can, but I can’t do a lot of things now. I used to lift 50lb. bags, but my joints-”
Doc: “How do you sleep?”
Me: “Like a rock.”
Doc: “But you don’t feel rested, right?”
Me: “No, morning is the best time of my day.”
Doc: “Have you tried Tramadol or Cymbalta?”
UNSPOKEN Answer: “I have a fever every day. I have a fever right now in this cold office for 3½ hours. But you aren’t taking my temperature. You haven’t ever examined my joints or read my chart. You seem to have a preconceived notion that you’re trying to fit me into. Apparently you can’t fathom this, but I have actually tried to do all of the things I say I can’t do. I didn’t just lie there and say ‘I can’t.’ I found out that I can’t because I tried, and I can’t. Perhaps the reason is that RA can inflame tendons and cause sudden weakness, stiffness, or instability. Whatever the reason is, I’ve gotten letters from hundreds of patients who experience the same things as me. And even if I were the only one, it’s still true.”
Vignette 3: Let’s make a deal!
Identity withheld: “She has RA too. She can put up the tents and sleep on the ground. And still do everything.”
Me: “I don’t know anything about her or if medicine helps her-”
IW: “Her daughter has it too and she’s ok.”
UNSPOKEN answer: “Let’s make a deal. I won’t assume you’re being insensitive if you don’t assume I’m being lazy.”
Deal or No Deal
Seriously, like most people with RA, I’d like someone to offer me a deal. Don’t most of us take whatever’s behind Door Number 3 or Curtain Number 2 (like medicines we’ve never tried before!) because even though it’s unknown, it must be better than what we have? If we wait hours every month at the pharmacy or medical appointments, when they call our name, it feels like an announcer on The Price is Right saying, “Kelly Young, Come on down!” Personally, I’d buy a vowel or a lifeline or anything that could possibly help me figure out this puzzle…
I’m ready to say, “I’ll take ‘SOLUTIONS’ for 1000, Alex”
How can someone judge whether I’m truly weak or just lazy from across a room? Or if they know nothing about my life? If I say I’m trying my hardest, how does anyone know that I’m not? Is living life with RA a sentence to living life doubted? I truly hope not, but I’ve been accused on both sides with occasional comments that hint: “Do you expect us to believe you’re really sick and still blog?” to others who insist: “If you were willing to try, you could exercise and feel better.”
I don’t know; I’m just doing my best and assuming the same of everyone else with RA. We really need someone to give us the benefit of the doubt.
How about you? Any UNSPOKEN ANSWERS to misconceptions?