on July 14th, 2015 1 Comment
We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient with Crohn’s disease.
As a child who was diagnosed with Crohn’s disease at the age of nine, I learned to give my power over to my doctors and parents. I never questioned the constant prodding, the pain that I had to endure from different tests and exams, the dozen pills that I swallowed down each day, because after all, I was to trust doctors and adults. They knew what was best for me. They knew what was best for my body. And of course, this is true – but only to an extent. Please hear me out.
In no way am I undermining the miraculous work that medical professionals do each and every day. I am beyond grateful for the way that my disease was handled, I was given a fairly normal childhood because of the way my medical team was able to manage my disease. And on top of that, I have the most incredible parents who handled my disease beautifully; they allowed me to feel supported, loved and taken care of. Honestly, I just had to show up for doctor appointments, swallow pills, and be a kid. I left the details up to the adults.
But then I started growing up. High school, boys, and school dances became my new normal. I lost my power at the age of 17 when I was date raped. Although I attempted to say “no” and stick up for myself, I ultimately didn’t know how to confidently do this. I didn’t know how to command respect because I was so used to never being asked to say “yes.” Unfortunately, this situation snowballed into another date rape and ultimately a suicide attempt. I truly felt detached from my body. It wasn’t mine. I didn’t know how to handle it. I despised it. It was the source of so much pain. And so, I wanted to leave it.
I never connected my inability to stick up for myself with being a child of chronic disease until the last couple of years. As I reflect back, the correlation is so clear. I never was taught to question what my doctors did to my body. I cannot recall being asked if it was “okay” to be examined or to be touched. If I was in a doctor’s office, it was just assumed and expected. To be clear: There was absolutely never anything inappropriate that happened to me in my doctors’ care. I think the only reason that the perceived lack of power on my side affected me is because I was a child, and I didn’t have the capability to differentiate the way I handled my body in the care of a doctor versus the hands of a teenage boy.