Did you know February 28 was Rare Disease Day? I assume you did, because you read my awesome post on The Mighty.
Last year, Rare Disease Day was like my coming out as a chronically ill, disabled person. I announced to my friends and family, “I’ve been sick my whole life; I just didn’t know it!” They were suspicious and confused. A few responded, “But you look good!” And I was like, “That picture is 15 months old and since then I’ve gained 40 pounds from prednisone.” Then I posted an updated picture and some people unfriended me, because rashes aren’t cute.
This year, Rare Disease Day was a milestone. I celebrated by eating a cheeseburger, because I was hungry and beef can be rare too. Except I requested mine be well-done, because my life is exciting enough without E. coli.
I’m sorry if you are vegetarian or vegan and this offends you. I’m just trying to survive. I cannot eat one piece of lettuce without suffering 12 hours of knife-like abdominal pain. My soy intolerance also severely limits my animal-friendly options. But yes, I can digest a cheeseburger (fresh and grass-fed, of course). It’s kind of like being allergic to the smell of soap, but not body odor?
I’m not complaining. Rare disease has taught me to appreciate that I can eat food, however limited. So I savor cheeseburgers. Sometimes on a weekly basis. It’s okay; I’m not on prednisone anymore.