Chronic illness is different from illness that gets cured and illness from which you die. It never, ever, ever goes away. It may go into remission, but it’s always there, like a sleeping dragon inside you, ready to flare at will and take over your life.
I first got sick when I was 19 years old. I couldn’t keep any food down. I lost 80 pounds in three months. I was living in an apartment on Long Island and commuting to college at the time. I remember sitting in bumper-to-bumper traffic, pulling over to vomit, and then getting back on the road to get to school. There were days when I couldn’t keep a glass of water down.
I had been a little bit of a rebellious teenager, so when the family doctor couldn’t figure out what was wrong, he said it was psychiatric. My parents sent me to a psychiatrist three times a week. And he wasn’t a good psychiatrist at all; he was one of those statues who never responded to anything I said, or even handed me a box of tissues when I cried.
Then, one day I woke up and my right ankle was bright red and the size of a football and I couldn’t walk on it at all. Then I got these hot, red bumps all over my legs that hurt a lot. When the family doctor couldn’t figure out what it was, my mom took me to a dermatologist. He’s the one who diagnosed me with Crohn’s disease.
I then had all the tests and my diagnosis was confirmed. Even then, though, I had no idea what this would mean for my life. The gastroenterologist gave me some pills and sent me on my way.
Twelve years of steroids, eight surgeries, and countless hospitalizations later, I now know better than I ever wanted to what it’s like to live with chronic illness.
Rather than moan over it, though, I’ll offer a tidbit of advice. I think everyone with a chronic illness should have a cat, a computer, and a book to write. Really. My cat Emily has been with me through thick and thin. She is the closest thing I have to a caregiver. With her, I’m never alone.
And a computer – what would I do without the internet? It’s my social life. It’s my professional life. It’s my gateway to the world, allowing me to participate actively in life even when I can’t leave the house.
And the book? Well, I’ve written two. These days, I write shorter pieces like this, and like my blog. But it’s a way of having a voice. And that matters.