I've been a performer -- dancing, acting -- for as long as I can remember. I was in my first stage show was when I was 11. So it's not that hard to understand how a diagnosis of rheumatoid arthritis when I was in my late 30s sparked a huge change in my life.
When I look back at it now, there were probably earlier signs of this disease that I simply would not have recognized as RA. I noticed one day in the spring about six years ago that my elbow was really tender and quite swollen. My doctor looked at it and said it was tennis elbow. I got a brace, wore that for a few weeks and it sort of settled down. A few weeks later my other elbow blew up, so I slapped a brace on that one. That same year, in the fall, I woke up feeling like I had the flu. My joints were sore and swollen. When it didn't get any better I went to see my GP and right away he referred me to a rheumatologist. I was lucky. I know a lot of people who have been misdiagnosed for years before seeing a rheumatologist and finally realizing what it is they're up against.
I had heard about RA, and I thought I knew a little bit about it -- but I certainly did not know about the variety of treatments available. And I remember coming to a realization, pretty quickly. "Wow, there's a good chance that I'll be on medication for the rest of my life." It sort of made me wonder how much my life was going to change, in fundamental ways. Would I be able to keep going to dance classes two or three times a week? Eventually I did have to stop dancing, because it was too painful on my joints.
This was frustrating, because I was used to such an active life. Suddenly I had to slow down, which was always a big thing for me. I didn't want to go slow, ever. But I had to deal with the reality of where I was. I took about four years away from theater. I just didn't think I had it in me to do rehearsals and performances, which take so much energy. I stopped acting while I tried to figure out ways to manage my condition, trying different medications, going to physical therapy, occupational therapy. Over time I found that I could still be active, I just had to learn to do it in a different way where I wasn't putting so much pressure on my joints. Swimming instead of biking, for example. And now my partner and I are doing ballroom dancing once a week. It's not quite as strenuous as salsa, which we did before. I've always loved being in the dance studio, and going back even just once a week was a little bit like coming back home.
You have to be so patient learning to live with a chronic condition. One of the biggest things I discovered was that if I couldn't dance or perform on stage the way I had before, I simply had to find another creative outlet. So I started writing. I've been doing that my whole life, but I never really focused on it until I got this disease. You know, there may be things that can't do again, or things that you might not be able to do very well again, but that doesn't mean there aren't other things that you can do. You have to find different paths to the things you enjoy. It can be frustrating, but if you take one step at a time you can get there. I’ve been able to return to the stage in a limited capacity and that leaves me feeling accomplished.
Attitude is huge. You can't just focus on the illness. Focus on things outside of the illness, like your family and friends. Pay attention to what is good in your life. You'd be surprised, but by focusing on those things you can cause the disease to sometimes recede a bit. And when you're having a bad day, or a bad flare, if you're able to give yourself permission to check out for a while, then try and do that. Tell yourself, "I'm going to stay home under a blanket today and read that book that's been sitting on my shelf for two months." It's just as true for people with chronic conditions as it for everyone else: you can't be there for other people if you haven't looked after yourself.