What It’s Like Living with Lupus


It’s hard to convey to people how I’m feeling and what the practical consequences are. Writing this is painful. I feel stalked by shame when I have to explain why I can’t go out in the evening because I’ll be overcome by fatigue, or why I can’t sit in the sun because I’m photosensitive and the sun makes my joints ache.

This afternoon, I’m contemplating the bruises on my legs, the latest manifestation of my malfunctioning immune system. In December 2017, I was diagnosed with antiphospholipid syndrome, a blood-clotting disorder that rapidly escalated the urgency of my previous lupus diagnosis. The bruises aren’t because of the disease, which just causes clots and strokes and whatnot. The bruises are about the anti-clotting medication.

They appear from nowhere. The other day, I was quietly writing and a huge welt came up on my thumb. I did nothing to provoke it, but there it appeared, red-brown and glowing.