I’ve never been one to crave optimism. I didn’t immerse myself in the triumph-over-adversity messaging of the Chicken Soup for the Soul series as an adolescent, nor do I typically share affirmations or cat video pick-me-ups on social media. I’m more inclined to the analytic wisdom of bell hooks, George Orwell, or James Baldwin than to the spiritual aphorisms of the Dalai Lama or Deepak Chopra. Whether I saw the glass as half empty or half full never much mattered to me: the glass has what it has.
So when I was diagnosed with a fairly difficult-to-treat disease called idiopathic angioedema and chronic urticaria (a fancy way of saying we don’t know why you swell and hey, enjoy the 24/7 hives) six months ago, I wasn’t quite sure how to cope. My body is essentially in a constant state of allergy and releases large amounts of histamine into the bloodstream, causing painful tissue swelling and itchy, tortuous hives.
Angioedema quickly dominated every aspect of my life, until I couldn’t talk or think about much else. I needed help. Positive thinking was a great start, but alone, it was no match for the symptoms of this somewhat rare disease.
As it turned out, optimism for me came entirely in the form of something doctors would prefer you avoid when it comes to disease: the internet.
I first experienced the symptoms of this frustrating condition shortly before graduating from my master’s program. I awoke one morning with a thick, swollen tongue, half-shut eyes, and red welts the size of half-dollars across my body. Throughout that day, my feet went through progressively increasing stages of knotting and burning, as if I had sewn golf balls underneath my skin. By the time I finally made it to an urgent care that same afternoon, I was covered in hives and couldn’t walk.
Over the course of the next few months, I saw nearly ten doctors and at one time was taking about 20 pills a day, including nutritional supplements to mitigate the damage that the medications were doing to my liver and kidneys. I still have days when walking is painful or I can’t type because my fingers are too inflamed. Twice, I’ve had to remove my wedding ring using butter because my fingers had swollen and begun to turn blue overnight.