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.
At the age of 24, I had once again lost control of my body. My Crohn’s was in a full-force attack and resulted in me having multiple surgeries. I’m now living with a permanent ileostomy bag. At first, I resisted it with an iron fist, viewing it as my opportunity to stick up for myself and say "no." I tried every diet in the world, I tried every natural path – just to prove that that I could heal myself, that I had the power, that I was the one who could call the shots on my body. But, I eventually had to succumb.
I’ve made it my life’s mission to not allow this ileostomy bag to drag me down. Yes, if I had had it my way, I wouldn’t have had the surgery or the bag. But instead of putting this in the same category as the other times I lost my power, I’ve chosen to shift my perception. My power now resides in my ostomy bag. I am healthy, I can live fully, I've learned so much about who I am and what I want, I know what I deserve, and I’m truly committed to being the light for others.
Today, I can truthfully tell you that I don’t regret anything. I’m grateful for every obstacle and for every hurt because it has brought me to the woman that I am today. And I love her. But still, my story needs to be heard – and I beg for this conversation to be opened up in the pediatric medical community.
There needs to be some sort of initiative taken to teach children that they are involved in their care – even if it’s just a simple question before an intrusive exam. It seems simple, but I truly believe that this can help build up a sick child’s ability to stand up for him or herself as they grow into adulthood. I stand in solidarity with all children and adult children of chronic disease and ask for this idea to be examined. Please give us our power and dignity so that we may grow up to be confident adults and able to stand up for ourselves.
Dana Gatziolis is a health coach, country singer/songwriter, author, and ostomy advocate. She loves helping women (and men) to fall in love with their bodies and their lives, one step at a time. She's got a knack for hitting fear out of the park and living life out loud. She blogs at danagatziolis.com and is also on Twitter.
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