How I Feel When You Tell Me I 'Don't Look Sick'

I have Ehlers-Danlos syndrome. My genes are messed up and my joints are unstable. Just walking causes pain, subluxations, dislocations and more pain.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

“But you don’t look sick,” they say.

I have myalgic encephalomyelitis. I’m so physically exhausted, I feel like crying every five minutes. My body feels like it was filled with concrete. I’m constantly depleted of spoons.

“But you don’t look sick,” they say.

I have chiari malformation. My brain is literally slipping into my spinal cord, bringing along with it photosensitivity, migraines, weakness and neck pain.

“But you don’t look sick,” they say.

I have dysautonomia. When I stand up, my whole world goes black and blue. I sway and clutch whatever is nearby so I don’t fall.

“But you don’t look sick,” they say.

I don’t look sick but I feel sick. When you see me after I’ve put concealer on the dark circles under my eyes, clothes over my scars and bruises, high-dose medicines to cover my symptoms and a happy smile over my pained face… I’ll agree that I don’t look sick, but I’m not going to lie: I hate it with a passion when someone tells me I don’t look sick.

“Why?” the healthy people chorus.

When you say I don’t look sick it makes me, a chronically ill person, feel like you don’t believe me. Maybe after you say it I’ll give a polite smile and a nod because I’m too nice (and probably too much of a pushover) to yell at you.

Thinkstock image via Ingram Publishing.