February 2nd is Rheumatoid Awareness Day. Every one of us who have rheumatoid arthritis (R.A.) faces a different struggle. But we surely have some common concerns. My own experiences show me this disease seems to be highly misunderstood. So the question at hand is what would R.A. awareness mean to me?
It could mean the freedom to say “I hurt” or “I’m exhausted” without judgement or condescending comments. There are days when I hurt with every step and I just keep walking – until I no longer can. At that point, I have no choice. I must slow down or sit down, if possible. When someone says “Aren’t you feeling better yet?” or “Why don’t you take something for that? I saw something on TV that might help.”, I want to run and hide. That is, if I could still run.
It could mean the freedom to say “No”. Some days I’m too tired or I hurt too much to take on that extra project – or go to the movies with friends. I need people to understand I’m not depressed or antisocial. But I am budgeting my energy so I have enough to get up, get dressed, and go to work.
At times like this I’ve found it insufficient to say “I have Rheumatoid Arthritis”. The first time I disclosed that to an acquaintance, she told me her grandmother has that. Further conversation revealed (anyone with R.A. has already heard this one!) her grandmother had osteoarthritis. I am not minimizing the pain and complications that accompany osteoarthritis. But this disease hasn’t attacked my body because I’m old. And it’s not just my joints that are affected. It’s systemic and effects my entire body.
R.A didn’t sneak up on me slowly. It hit me like a bolt of lightning. One day I thought I was fine and the next day I woke with raging pain in my joints, accompanied by redness and swelling. And that was the morning that changed my life.
So what is it that I want others to be aware of? That this disease is unpredictable and different in each of us. That sometimes I hurt, but I want to keep going. Sometimes I’m exhausted and I can’t keep going. I’m not lazy and I’m not exaggerating the pain. I don’t want anyone to feel sorry for me. But I do want them to understand that this is an autoimmune disease which includes joint paint. There is much more to deal with than just painful and stiff joints.
Rheumatoid Arthritis awareness would mean that if anyone wants to know how R.A. affects me, they ask me. Please don’t get your information from TV commercials.
If you know someone who has R.A., find out more about it from informed sources at rheum4us.org.