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 seem like I’m total shock right now. But no one has asked if they could touch me before. I didn’t know I had a choice.”

I could see tears brim his kind brown eyes as he responded, “Megan, your body may not work like it’s suppose to, but it’s your body. You have a choice, you always have a choice.”

Three years have past since that appointment, but I don’t think I will ever forget that life-changing response. Because chronic illness can make you lose all sense of bodily autonomy. Because you get sick, and all of a sudden your body isn’t your own. In my life, it has felt like every single person is making decisions for my body, but me. That I’m constantly medicated, examined, biopsied, scanned, poked, prodded. And I don’t have a say in any of it.

Sometimes it literally feels like what little humanity I feel like I have left is removed the second I sit on the cold plastic chairs on an exam room, or put on an infamous blue hospital gown.

But then that amazing doctor’s voice will ring through my ears and remind me “Your body may not work right, but it’s your body. You have a choice,  you always have a choice.”

Making me drop the expectation of having to be the perfect, compliant patient. And reminding me I have the right to say “no”  to treatments, scans, referrals, exams or anything I don’t feel comfortable with. I have the right to say “stop it, that hurts, I’m done or I’m not comfortable with that.”

I have the right to question and even disagree with doctors. Even though they have oodles of time in medical school, I have almost 26 years of living with my disease. And their training doesn’t make my experience living with my disease any less valid.

I have the right to be loud, bold, and demand the care I need. My body may feel like it’s in the hands of some very terrifying life-threatening diseases, and a handful of very intelligent people with white coats who I pay to help keep me alive. But at the end of the day it’s my life and my body, and my doctors get to leave my disease with my patient file. I’m the one who has to live with my conditions, treatments and the result of them all. And I’m so grateful for that amazing doctor who through his actions and words taught me “It’s my body, and I always have a choice.”

And I want to remind each and every one of you the exact same thing. Especially when it comes to your body and your healthcare: You have a choice. You Always have a choice.