Nobody would argue that we need more rheumatoid arthritis awareness. I admit that I didn’t know much at all about RA until I was being diagnosed with it. Why should anybody know much about RA until it touches someone in your life, family, friends, or public figure? No real reason unless we’re in medicine.
If you read forums or blogs discussing RA, you will certainly have come across posts which focus on “what not to say”." to patients, or which focus on what bugs us, as a community, the most when others might say it during a social interaction. I read these posts and can sympathize with those who are frustrated, but honestly I have not encountered the same level of annoyance or anger which is often expressed.
Here are a couple hypothetical scenarios to contemplate:
You and a friend are in your early 20’s. You’ve met for coffee and are chitchatting about life - boys, jobs, heatlh.
You: Ya know, sometimes life just sucks. I was just diagnosed with arthritis, rheumatoid arthritis. Everything seems to hurt, a lot, and I just hope it gets better.
Friend: Are you sure? Don’t old people get arthritis. Maybe it’s just that disease they talk about in those commercials in TV. Maybe you have fibromyalgia. You could take whatever-that-is for the pain.
You: No, I’m sure. And not just old people get arthritis. You’re thinking of osteoarthritis which is definitely more common, and kinda an "old person’s" disease. At least that’s what it seems like. My arthritis is RA which anybody can get at any age.
Friend: Oh, that’s the disease that could make your piano playing crumble if you believe the commercials. Good thing you’re not a piano player.
You, chuckling: I guess that’s something. Hey, maybe I’ll start golfing like a pro since I’ll be taking the same drug as that famous guy even though he doesn’t have RA.
You are speaking with a friend who has known you for quite awhile but whom you haven’t seen in years. The conversation comes around to health.
Friend: So how’s your health doing? Seems my kids keep bringing home every cold and flu which travels through the school. Someone in our house is sick practically all the time.
You: Yeah, that sounds like a tough situation. I’ve been trying to avoid getting colds or the flu since I was diagnosed with rheumatoid arthritis last year. If I catch a cold, I won’t be able to take my medicine like I’m supposed to. Then my joints start to hurt really bad.
Friend: My grandmother has arthritis. She has joint pain almost all the time and she has had both her hips replaced.
[Your thoughts interrupt: Geez. She doesn’t have a clue. I can’t stand it when others just assume that I’ve got regular ‘arthritis.’ Lots of old people have arthritis but that’s nothing like what I have. This has got to be one of my pet peeves, osteoarthritis is nothing like RA]
Friend is still talking, while you were busy thinking: My grandmother developed RA when she was in her 30’s. She’s had it for over 40 years and she didn’t have access to the fancy drugs which are available now.
You, coming out of your private thoughts: Wait a minute. What did you just say? Did you say that your grandmother has lived with RA for 40 years? Wow. How’s she doing?
Friend: Her hands are gnarled looking and she moves around slowly because her feet and legs get really stiff, but she focuses much of her retirement on doing things she enjoys. She’s part of a book club where they choose books available on tape so she can listen to them rather than have to hold a book open. Her local pool is heated and she goes to an aqua exercise class twice a week. Basically she tries to stay as active as possible, but I wish that she had had access to the newer medications when she was young.
BTW, you look great. How do you feel?
You: I’ve got problems in my “”
[Conversation continues and you begin to feel the visceral annoyance fade away.
**Do either of these scenarios sound familiar to you? **
I’ve witnessed situations where people jump to conclusions without knowing exactly where others are coming from. You don’t always know what those around you know, or don’t know.
Be patient. Try not to take comments personally. If it seems appropriate, use the conversation to educate those around you.
Listen. Learn. Share. Educate.
What has been your experience? What type of comments have you received from those with whom you’ve shared your diagnosis? What was your response?** Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.**
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.