Great Expectations

Patient Expert

Be kind to yourself, we say. Work within your limits, we say. Accommodate your illness. Don't push yourself too hard. Sometimes, it sounds as if now that you have rheumatoid arthritis, it comes first no matter what. If managing pain means doing less, does that mean you have to give up on your dreams?

I've been thinking a lot about dreams lately. That is, when I wasn't up to my ears in work putting together my first exhibit of photographs - I'd thought of it in my wildest dreams, but didn't really believe it would happen.

When I was 16 and about to be discharged from the hospital after a two-year stay, the doctors had a serious talk with my parents about me maybe quitting school, living in a group home instead of with my family, working in something non-challenging, if working at all. Because of the disease, y'know. My parents refused, I went home and joined my friends in school halfway through the year, but it was at home that I had the real education in how to pursue my dreams. My parents gave me many gifts, but two in particular made all the difference to a girl with RA.

I came home using an electric wheelchair and it was obvious I would not have a career that involved using my body. "You'll have to use your brain," my parents said, telling me I was just the same as everyone else and then lovingly kicked me in the arse and expected me to make the most of what I had. The question was never what grade I got, but whether I did my best. When I got a D in math - because saying that my math skills are not very strong is like saying that Death Valley in July is just a little toasty -- we celebrated like it was an A. And those two things, having expectations and being taught to do my best, set the tone for my life and are the reason I've accomplished anything at all.

There are days where doing your best means you get dressed instead of staying in bed and sometimes those days blend into each other, becoming a blur of weeks and months and it's only when you come out the other side, that you realize your disease just chewed up another big chunk of your life. But what is important is that during that time in hell you got dressed when you could, you laughed despite it all and now that you are better, you pick up where you left off.

RA delays things. It can derail you from your goal and there are times when you despair of ever making progress, ever fulfilling your dream when you get caught up in "normal" timelines, thinking that you have to follow the trajectory of other people who are perfectly healthy. And when you can't because you have to do things more slowly and take frequent breaks, it's easy to lose focus and start blaming your disease for stalling you out yet again. But where is it written that you have to work on any particular schedule at all? When it comes to dreams, pursuing them is what matters, not how you go about it, so you are free to create your own path, carve out a different way to make a dream happen. You may not become a trapeze artist, but you can find another way to work in the circus.

It's not always easy, this chasing of dreams and this is where having RA can actually work for you. Living with this disease is hard, but you keep going anyway because, as my father used to say, the alternative sucks. And because you keep going, because the only way to live with RA is to become as stubborn as a goat and refuse to stay down, resilience, the skill of how to keep going becomes ingrained within you. You learn to withstand long periods of having to put your dream on hold while you deal with your body and its nonsense and during those times of flares and pain, you hone a single-minded focus by getting through each day and when it is over and you get your life back, you use that focus to pick up your dream and work on it some more.

Do your best. Dream. Expect great things of life.

You can read of Lene's writing on The Seated View.