I Told a Man About My Disability. He Responded, 'But You're Beautiful!'

Last Friday, I attended a die-in at my Senator Roy Blunt’s Kansas City office. My headstone read “Beppy Huls, 1985-2017. Died of a treatable pre-existing condition.” I got to get up on the megaphone and tell my story, and that was exciting.

I stood with my friends, listening to other people’s stories about their health and what would happen to them if the AHCA were to pass. A confused-looking and obviously drunk man appeared in the crowd, seemingly out of nowhere. He looked around at the signs, and then at me. “Trumpcare kills? I thought that was Obamacare.” My friends and I explained to him what the ACA has done for people. He looked so surprised. “I’d never heard any of that before!” When I told him my own life could be at risk with the passing of this bill, he said something that perfectly underscores the dismissal of people with invisible disabilities:

“But you’re beautiful! What’s wrong with you?”


I blushed and said my disability was nearly invisible, but not quite, and showed him my VNS and the wire that goes up through my neck to my brain. “Without insurance,” I said, “it would have been $89,000.” His jaw dropped.

It’s people like this who we have to talk to – to, as they say, get them woke. I’m hoping I changed a mind today. Even if he’s not registered to vote, hopefully he’ll pass it on. Start dialogues whenever you can. Cite sources. You might be surprised at the things people just simply don’t know.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via monkeybusinessimages.

Find this story helpful? Share it with someone you care about.

Related to Chronic Illness

purple and pink watercolor of woman surrounded by butterflies

Falling Peacefully and Rising With Grace When Your Health Goes Downhill

So, I’m sitting here, on the edge of my military-precision hospital bed sheets, going into my official third day as an inmate, gazing out of the window into the courtyard and the glass-walled corridors opposite my four-patient bay. Ed Sheeran serenading through my earphones, I feel like I should be in some sad but cute [...]
watercolor painting of woman with colorful hair

How Chronic Illness Caused Me to Lose My Sense of Purpose

I have started and re-started this post three or four times. I have written and rewritten drafts in my head and let my fingertips graze the keyboard, daring myself to start typing. I have been unsure of how to approach the topic of losing my career. Of how to do justice to the crushing feeling [...]
Doctor meeting with patient in exam room

10 Things I Look for in a Doctor as a Patient With Chronic Illness

A good general practitioner (GP) is essential when you have multiple health problems. I’m so thankful for my GP because he is a fantastic doctor and knows me well enough to know that if I say I need to be squeezed in to see him, it is urgent. He believes me. He trusts me. I [...]
two friends arguing with each other

5 Reasons Unsolicited Medical Advice Hurts More Than It Helps

Look, I get it. You see someone hurting and you want to help them. Maybe you were sick once but because you tried x-supplement or y-exercise and you now feel better – and that’s great. I’m happy for you, really, I am. And I appreciate the sentiment of wanting to help me to feel better. [...]