My Rare Disease: recent publications

What a Visit With My Rare Disease Doctor Taught Me About Bodily Autonomy

I remember the first time a doctor asked if he could touch me.

I was at my first appointment with my geneticist (another specialist we added to the lengthy list of doctors I have seen in an attempt to diagnose the rare disease that had been and continues to slowly and methodically try to end my life). We began the physical exam. He had me hop on the table, looked me square in the eye and said “Megan… can I touch your toes?”

My jaw dropped to the floor in shock to his  question as I nodded my head yes. He smiled and carefully examined my toes. Then right after he asked me “Megan, can I touch your stomach?”

And once shock invaded my entire system. But finally able to string a sentence together questioned him.

“I have a choice?! I’m sorry I

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