"Oh, wow, you're gluten free? And paleo?"
"Kind of. I mean, I try to be."
"Why do you torture yourself?"
"Well... I mean, I have this autoimmune condition. My rheumatologist hasn't really given me an official diagnosis. I mean, yeah. A doctor a few years ago thought I had Behcet's Syndrome, but it's really only found in Middle Eastern men..."
These are the kind of conversations I end up having with other humans about my autoimmune problems. It usually starts with an observation about what I eat (or don't eat). Then I'm forced to talk about my vague experience battling an autoimmune disease. People usually ask me if restricting my eating actually makes a difference, or if I fart a lot when I cheat and eat a donut. Some humans have the audacity to ask if I actually just do it to control my weight. The answer to that is "NO!!!!" if you were wondering. I would probably enjoy my dietary restrictions more if they did result in me looking like a supermodel.
The other day I went to see my rheumatologist for a routine visit. He has lived in the Bay Area for decades but still has a hint of a Brooklyn accent. A few years ago, when I moved to Santa Cruz, I was forced to seek him out when I experienced an outbreak of skin lesions on my left shin, because that's the kind of thing that happens to me. The medication I take had successfully eliminated this symptom from my daily life. Then, one day in May, about five of them cropped up, forcing me out of lesion remission.
My rheumatologist looked at my blood panel results, which were stable. He did the usual routine checkup things. He commented on the fact that my gums looked healthy. Yep, I have annoying gum inflammation too. Then he said, "you appear to be stable. Let's see how things go over the next year. Maybe we can get you off medication. Who knows. Maybe you don't even have an autoimmune condition."
"Who knows. Maybe you don't even have an autoimmune condition."
Such has been my life with an autoimmune condition. When I was fourteen, joint flare-ups began that led doctors to believe I had Juvenile Arthritis. Only a few months later this symptom disappeared, only to reappear during my junior year of college for a few painful weeks. When I was fourteen the skin lesions began to appear. Doctors would put me on different doses of medications that would alleviate the lesions for awhile and allow my legs and arms to heal. Going off of gluten in 2009 made these spots almost disappear entirely, and then going on a low dosage of a medication called Dapsone eradicated them. Until the left shin outbreak, that is.
There are countless other weird symptoms and experiences that have happened to me over the last fifteen years. Do I believe I have an autoimmune disease/condition? Yes. Does it keep me from doing some things? Yep. I didn't even try to apply for the PeaceCorps, because when I emailed them with a description of my health problems and asked if I could work for them I received a prompt "no." Additionally, I am not allowed to give blood anymore because of the medications I take, but I'm not that sad about it.
I do not regret this circumstance, but only that I have occasionally allowed it to direct the course of my life. At the same time, we all have something that can direct the course of our lives if we let it, right?