But…You Don’t LOOK Sick: Challenging Perceptions of Illness

“But… you don’t look sick,” someone says to me.

For the eight millionth time. Is it a compliment or an insult? I’m still not sure. So, I don’t look like I am sick — you say, but what does illness look like?

Take a minute. Think about what illness looks like. I’m not a leper. I’m not in a wheelchair. What does my illness look like? You're correct if you stopped and thought, well, it’s all internal.

“But you don’t LOOK sick.” Elle on a ‘good’ day.

Ninety percent of all illnesses are invisible. Some studies say it’s closer to ninety-six percent. Our bodies may look fine on the outside, but inside, there is a war being waged. That is important to understand.

I have, to date, in alphabetical order: Celiac sprue disease • Ehlers-Danlos syndrome type III hypermobility (EDS) • endometriosis • eosinophilic esophagitis (EoE) • gastroparesis • hypophosphatasia (HPP) • interstitial cystitis (IC) • irritable bowel syndrome (IBS w/constipation) • mast cell activation syndrome (MCAS) • osteopenia • ovarian cysts, chronic • postural orthostatic tachycardia syndrome (POTS) • Sjogren’s syndrome • small fiber neuropathy • thyroid disorder (hyper and hypo)

That’s straight-up copied from my medical record. I don’t like to display those things because they are what I am made of — not who I am.