Wednesday, October 25, 2006

Illness, Diagnosis, and Sanity

After reading Wheelchair Dancer's post the other day about her lack of diagnosis and the following posts and comments, I really got to thinking about how diagnosis of a chronic illness affects a person. I haven't really addressed my illness, struggles to get diagnosed or anything along those lines. Only recently have I really taken on "disability" as something that pertains to me.

From WD's posts, I see that in some people's minds you have to be "disabled enough" to count. I'm sure that I don't fall into that category. I look like a normal 20-something professional. I can walk and do the majority of the things I need to do--most of the time.

At the same time, But you Don't Look Sick has really made me feel more at home and at peace. There's something about facing a lifelong illness but still looking completely healthy and "normal" (whatever that means). Friends, family and spouses don't really understand what that's like.

I've been having problems with my joints, primarily my feet since I was about 8. I spent most of 3rd and 4th grade on crutches because of the pain. By high school, I had to give up my one love, classical ballet dancing, because my doctors told me that if I continued to dance, I would be unable to walk by the time I was in my 20s. In general, they didn't expect me to be able to walk by the time I was 25 (so far so good--only a few more months until I hit that milestone--granted, I walk like a little old lady some days, but I'm still doing better than the doctors expected). All those years, and no one ever even tested me for any cause to the pain or why I would be crippled.

I cried for weeks. I was devastated.

I asked why, and no one had an answer. I asked what was wrong and they said "Just some inflammation". Things got worse, and I changed doctors. Blood work followed, but still no answer. "You have a high ANA," they said.

What does that mean?

"You might have lupus or a connective tissue disease," they said.

So what do we do?
"Nothing, your symptoms aren't bad enough. You can have steroids if you're in pain."

More blood work. No more answers. "Nothing's wrong. You're an anomaly."

Then WHY DO I HURT? Why do my feet look like they're being twisted?

I finally got my diagnosis this year, at the age of 24. Psoriatic arthritis.

I never thought about how much a lack of diagnosis hurt me over the years. Growing up I was called "sickie", a hypochondriac, overreacting, attention seeking and many other awful things. When people asked what was wrong or why I was walking strangely or limping, I had no answer other than "it hurts". Over time, people don't believe that any more. Even my obviously swollen fingers, hands and feet weren't enough "proof" to anyone that I was not well. That I deserved to miss gym class. That I deserved their attention.

After some point, you begin to wonder if maybe it is all in your head. That's when diagnosis helps. Self-doubt is a horrible thing, and when you need all the energy you have just to make it through the day, it's the last thing you need.

1 comment:

Matt said...

AMEN! I couldn't have said it better. A diagnosis does help. I'm sorry to hear it took so long for you to get a diagnosis. I'm also sorry that you had to give up ballet. It is a beautiful art. Like you, I'm preparing to give up something I value. I'm currently a teacher for Deaf children. I use sign language all day at work. Well, it has quickly taken a toll on my PA joints. I've only been a teacher for 3 years and now I need to look for a different job because of the pain. It was a lot easier for me to tell my boss though, knowing for sure what was causing my joints to flare and hurt. I like your blog. I just discovered it today. I'll be sure to keep reading your posts.