I have loved words for as long as I can remember.
As a kid, I was always writing or reading, burying myself in the impact words can have on the imagination. As I grew older, I relished losing myself in books, pretending to be so very far away whenever my life seemed less than ideal. Now, I still love reading, and I make my living with words: writing them, editing them, using them to inform.
It took me a long time, though—perhaps longer than it should have—to turn my love of writing into a health-centred blog. It was scary to put myself out there, to admit to the whole wide Web that I have a chronic illness, that I am not normal, whatever that is.
My first health-related post was during Invisible Illness Week in 2009. At that time, my blog was more about my life in general than patient advocacy, and I didn’t anticipate writing much more about my challenges with psoriasis and psoriatic arthritis. I remember the horrible pit in my stomach—the way my tummy feels during that first big descent on a roller coaster after the long, slow climb—as I hit the publish button.
Slowly, I started adding more content about PsA, until it completely took over my blog. Why did that happen? A couple of reasons: At that point, not a whole lot of people in my life knew about my health difficulties, and few of them really understood exactly what I was going through. Posting online was a way for me to connect with people like me. It also served as an outlet, as a way to release the sometimes ugly emotions that are one of the worst side effects of autoimmune disease—worse even than moon face (aka fat face).
Now, my motives still incorporate the desire for empathy and the need for a release, but there’s something more. I wanted to educate people as to what it’s like to be trapped in an 80-year-old’s body, what it’s like to have a chronic illness. I love being able to help people, to connect with people and to reach more people than I otherwise would be able to. I love being a patient blogger, a health advocate, a voice standing up and saying, “Yes, I have arthritis. No, I’m not 80 years old. And no, it doesn’t ruin or run my life.”