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What It's Like Getting Sick When You Live With Autoimmune Disease


This week it happened. I wash my hands with surgical scrub, I drink tea with tulsi in it every morning, I do all I can to try to stay away from ill people and germ incubators. It’s also hard to tell when I am coming down with something, since wide temperature swings, body aches, fatigue and digestive issues are typical for me. Heck, my baseline state of being involves flu-like symptoms. But being human and having to be out in the part of the world that requires pants and shoes means that I inevitably will catch something. A bug.

And this was no sweet-faced, rosy-cheeked ladybug waving friendly antennae, mind you. This was a slimy, ghost-white thing that slithered up into my sinuses and oozed into my lungs, filling the top third of my body with its gook, pressurizing my head and ringing my ears like church bells. My hot/cold/fussy/achy body.

It’s still taking its sweet time to move along, swinging by to “just pick up a few things” multiple times a day but not taking much with it. My cat crawls on my belly to soothe me (and steal my body heat), then stares wide-eyed in betrayal as she bounces up and down with every cough, a boat on a storm-tossed sea of blanket.

Sometimes being sick with something acute like a cold brings a little relief to my autoimmune self. It’s like my ramped-up immune system finally gets to channel its energy in a productive way for once instead of taking it out on me. My immune system is a hyper child who does amazing things when in gymnastics or track, but tears up the house most of the time outside of practice and competitions. For me, being sick with a cold or flu is that brief moment of reprieve when the house is quiet and still, before practice is over and the chaos returns.

And, oh, does it return! There must be ginseng cupcakes covered in jellybeans and sprinkled with instant coffee powder served after those practices, because once the acute illness passes, my immune system does not wanna stop. So it’s usually about a week of being acutely ill, soon followed by a flare of one or more of my diseases. A one-two punch that leaves me scrambling in week three to try to catch up on everything that fell by the wayside. (I haven’t found solid research to back up the idea that an acute illness will then flare up a chronic autoimmune illness like my psoriatic arthritispsoriasis or Hashimoto’s, by the way. This is just the pattern I’ve noticed with myself. Though there isn’t much research out there on us autoimmune folks in general, so one day someone might find that it’s true.)

My immune system doubling down on me means that I have to double up on the self-care stuff. Not easy, I know. I make myself lie around staring at TV or flipping through magazines even when I start feeling a little antsy. Carry around water or tea at all times to keep the fluids going. Eat off paper plates or takeout containers (and say a little prayer for forgiveness from the earth as I do). Let things pile up, trying to keep a list so I’ll remember what they were once I’m feeling better. When I get the urge to jump up and take care of something, I add it to the list instead. For me, healing often includes lots and lots of solitude. It’s different for everyone, though. Each body, each person and each illness has their own preferences and needs, especially when ill. Honor that in yourself and in others.

Getty Image by MichikoDesign

This story originally appeared on SpoonieHeart.