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.

This guy wants to run for president...

Sam Brownback, a Republican Senator from Kansas, has his eye on the Presidency according to news reports. He is a conservative Christian right-wing politician who has appeared in churches and been "anoint[ed]... as the Christian right's next candidate for president".

According to the Rolling Stone article:

He is running for president because murder is always on his mind: the abortion of what he considers fetal citizens. He speaks often and admiringly of John Brown, the abolitionist who massacred five pro-slavery settlers just north of the farm where Brownback grew up. Brown wanted to free the slaves; Brownback wants to free fetuses.

I find it odd that "murder is always on his mind", but he admires a murderer and speaks often of the man. In the Christian belief system, murder is a sin. Abortion is killing a baby; therefore it is sin, regardless of the mother's situation (rape, incest, furthering the pregnancy may harm the mother's health, etc). Yet, somehow the man's moral compass allows him to think that John Brown's actions were justified because they had a political purpose. This begs the question: What does he think of abortion clinic bombers?

Aside from his wonky political beliefs, I find his choice of idol very disturbing.

One and a half weeks to go...

A week from Friday will be my last day at my current, horrific government job.

While government jobs offer incredible job security, there is no driving force to encourage people to do a good job (or even DO their job) for that matter. Eventually, the fact that my ultimate boss, the President of the United States, stands for things like torture, have taken their toll. Working in the government (civil service) is not for everyone. It is definitely not for someone with a strong political sense, especially if those sensibilities go against much of what the current administration is doing.

When congress gave the President more power to spy on Americans (yes, only under certain situations that should have been covered under FISA), make it okay to torture prisoners, and whatever other evil things are going on that we don't know about, I really lost any and all desire to continue working in that hellhole.

Thankfully, that day will come soon.

The private sector is not perfect, but at least the most evil things most corporations do involve swindling money--not torturing people.