I have Lupus. It's a chronic auto-immune disease with no known cause or cure. The most prevalent symptoms are pain, joint inflammation, fatigue and extreme sensitivity to the sun. There's a bunch of other delightful side effects: http://www.lupusny.org
I started feeling sick when I was 15 years old. I was diagnosed with Lupus when I was 22. That's seven years of doctors telling me it was growing pains, telling me I just needed a boyfriend, telling me I must be on drugs or in need of a shrink.
Seven years of negative blood tests and my veins collapsing from the needles. Seven years of struggling to breathe while one doctor after another told me it was all in my head. Seven years of spending most of my time indoors, barely graduating high school, and losing friends one by one because I never went out or returned phone calls.
In my last year of high school, I walked the six blocks home every day. One block was uphill, and there were days when walking up that little hill felt like a mountain.
I have been in pain every day of my life for 32 years. It's a cliche, but you get used to it. You make accommodations for the achy legs, the stiff neck, the headaches, the labored breathing.
There are days when I wish Lupus were more visible...if there were some way of letting people know I'm sick. I might get that seat on the train. For the most part, however, my illness is invisible. I don't walk with a limp, or use a cane or any other assistance. In fact, I walk very quickly. It's more painful to try to walk slowly. And during the day, the less time spent in the sun, the better.
Having an invisible disease leads a person to feel as if they're hiding something, which leads to its own problems. It's a very awkward thing to bring up in conversation. In my opinion, it's best left unsaid.
I invite all comments, questions, criticisms, etc. Are you living with an invisible illness? How do you deal with it? Let me know.
No comments:
Post a Comment