Invisible illness can be isolating in more ways than one. Not only does the nature of our pain mean spending a great deal of time cooped up, but even when we go out in the world our symptoms cannot be seen, and therefore often go unacknowledged by even the most compassionate people in our communities.
The “spoonie selfie challenge” was born out of a desire to see experiences that reflect my own; I wanted to have evidence that there are many others out there who are feeling tired, weak, and sore, and know that our make-upless, tear-streaked, puffy faces deserve to be seen just as much as the perfectly posed selfies of the healthy and robust.
This project does not exactly “make invisible illness visible,” but it at least provides us with some visual evidence that we are not alone, and that housebound pyjama and ice-pack wearing days happen, and that’s okay.
I will continue to post your submissions as the roll in. Send your “spoonie selfie” and description to firstname.lastname@example.org.
Hi! I’m Brittany from Tennessee. I have Ehlers Danlos Syndrome, Myasthenia Gravis, Dysautonomia, and Celiac Disease. At the time I took this picture, my MG had wiped me out– big time! When my face gets droopy, I get a migraine, and migraines are always bad news. Luckily medication, ice packs, and a warm cup of tea can usually set me straight. If nothing else works, I have to take a nap in a dark silent room.
Brittany writes about chronic life and all kinds of other things at asouthernceliac.com.
This is my ice pack head wrap, one of many tools in my migraine toolkit. Ice helps numb the area where I feel the most pain. This was taken last week during an ongoing migraine that’s been lingering now for four weeks.
Jaime M. Sanders writes about living with chronic illness at themigrainedivablogspot.com.
My RA pain runs the gamut from dull aching to feeling like someone’s flexing a table knife between my joints, over and over. Sometimes it’s disabling, but for the most part it’s not. It’s just always there. Coping? I do as much as I can, try my best to stay cheerful and look for life’s gifts every day, and be gentle with myself. What else can we do?
Leslie Vandever writes about living with rheumatoid disease at rheumablog.wordpress.com.