I can very clearly recall the moment I realized I was a patient. There had been hints, of course: my Crohn’s diagnosis, lining up pill bottles on the counter, and my parents memorizing the GI nurse’s number. But I had obstinately protested, believing – if nothing else – that I wasn’t sick, I couldn’t possibly have a chronic illness, this was all just temporary. But after a few weeks, when the fall started to freeze into winter, the stark realization that the illness wasn’t going anywhere began to settle in. And then, during an appointment, my GI gently nudged a piece of paper towards me with the name and email address of “another girl like me,” meaning another pediatric patient. Finally it hit me square between the eyes – I had a chronic illness, I was going to be a patient forever, there were others “like me.”
It felt like getting out of a pool and putting on layers of clothes without drying off – I was wholly uncomfortable and couldn’t shake the feeling that something was wrong. There’s a concept in social psychology that says sometimes we feel a kind of transparency with those around us, which is to say that we feel others ‘just know’ things. For example, if you are walking around with $500 in your pocket, you have this sense that others ‘just know’ you have money on you and probably guard your pockets a little more. In my case, I had this unsettling feeling that people ‘just knew’ I had Crohn’s by merely looking at me.
The problem was that I didn’t want to be that person. I wanted to be the girl who danced ballet and was a big sister and was learning to scrapbook. Being called a patient was a misnomer, and I thought the assumed identity swallowed me whole.
But then there was another moment.
After slowly acclimating to the world of IBD awareness and fundraising via my parents and our family’s participation in a handful of local events, I was invited to speak to a group of sponsors. I was 15 at the time, and my Mom picked me up at lunchtime from school to take me to where I would be speaking. Admittedly, I was nervous and kept unfolding and folding my speech.
The room was full of important businessmen and women, all formal in their suits and shiny black shoes, and there I was, just a 15 year-old in a room full of adults. One of the fancy businessmen gave an introduction about me, and called me up to the podium. I unfolded my speech and began to talk.
As I started my speech, I noticed everyone was paying particular attention, their heads tilted to the side, their hands still on the tables. They were paying attention to me. Suddenly, I was an advocate. Not because I was speaking to a group of sponsors, but because I understood the power and gravity of my story and how to include others in my pursuit for better care and compassion for those living with IBD. I was no longer “just a 15 year-old in a room full of adults,” I was an advocate, and that transcended age. Despite their 30 plus years on me age-wise, I was teaching them something about what it meant to live with a chronic illness.
I am no longer worried about others ‘just knowing’ that I have Crohn’s. I am empowered and impassioned by my experiences as a patient advocate, and seek out opportunities to educate others. Being a patient advocate has transitioned the ownership of my disease from my doctors and parents to myself, which came with the realization that I – like everyone else – cannot simply be one thing.
Now, instead of feeling embarrassment and discomfort at the idea of being associated with others with my illness, I feel a sense of honor and gratitude towards other patient advocates who have chosen to use their pill bottles as soap boxes in sharing stories to effect change.
Because as the saying goes, lots of little voices together create a very loud chorus.