When I tell people I have an autoimmune illness, the reactions range from revulsion (some people are totally freaked out by it and believe it’s contagious) and overcompensation (too much sympathy and attempts to absolve me of responsibility). I don’t blame them, because it’s hard to get it right. But both responses rob us, Spoonies, of autonomy. And autonomy is part of our self-care — something often forgetten when we only focus on the emergencies rather than quality of life.
Ultimately, living with autoimmunity is like any life-threatening disease, in that it’s a lesson in human futility — a futility that we humans avoid confronting if we can possibly help it. It is what remains of the self when all predictability, control, and hope is removed. We live in the present, taking one moment at a time, and find joy in the corners of our existence. I believe this to be the actual truth of life when all illusion has been stripped away. And, knowing this, I laugh defiantly, wake up in a very painful body, and begin another unknowable day.