What It’s Like Living with Lupus
An “invisible illness” that changes everything
If you saw me now, you wouldn’t think I was ill. I don’t look ill. I have an “invisible illness” called 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.
Lupus is an autoimmune disease, which means that your own immune system attacks your body — potentially every bit of it — causing widespread inflammation. It can affect your joints, muscles, skin, and internal organs. Before medical treatment was available, lupus was often fatal within five years of diagnosis. My aunt died of it, and I was ill for some years before being formally diagnosed in March 2017.
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…
