Hi, I’m Isabelle

When I was first diagnosed with Crohn’s at age 15, I had absolutely no idea what that meant. For the first three months after my diagnosis I thought the medicine I was taking would just make it go away. I can still remember the day I asked how much longer I would have to take the medicine. My doctor looked surprised and then told me most likely for the rest of my life. After that I still lived in ignorance, thinking that taking the medicine forever would keep me totally healthy. It took months of intense illness to rid me of that notion. That’s when I fell into a deep depression. Everything seemed out of control and scary, and all I knew was that the rest of my life was going to be filled with this pain.Isabelle Linguiti

Of course I was incredibly angry about having the disease, but what made me even angrier was that nobody ever explained to me how IBD is not curable but it can be manageable. Nobody ever told me that while I will have it for the rest of my life I wouldn’t necessarily be in this much pain or this debilitated for all of it. Nobody ever invited me to give input into my own care.

I am not someone who takes well to being left in the dark so I starting spending all of my time stuck in bed researching and learning everything there was to know about IBD and its treatments. I read every study I could find and started bringing my ideas to my doctors. It was so frustrating because at every turn it felt like we were in uncharted territory and they didn’t know what to do but they still weren’t turning to me for help figuring it out. My opinions about what course of treatment I should take continued to form and in time I became more assertive.

I pressed my doctors to allow me to get a g-tube placed, something they don’t generally use in Crohn’s patients. It was the right choice for me. Despite resistance or at least hesitance on the part of my doctors, it ended up preserving my health during many periods of acute illness. There are other examples but I just share the g-tube as an example of why the knowledge and feelings of a patient are so important to consider in the decision-making process. I knew what my body needed and I was right.

Obviously I’m not a doctor and I should not be unilaterally deciding on the care plan, but I know that if I had not been advocating for what I felt was right for me in my unique situation, I would not be anywhere near as healthy as I am now. Now I feel like I have a really great team-based approach with my doctors. I want everyone to have that and I don’t want anyone to have to fight as hard as I had to in order to make that happen. I don’t blame my doctors for their resistance. I think they’re great and I believe they really respect me but including a patient’s perspective in decision-making is simply not the way things are done – especially in pediatrics. In my opinion having informed patients and a collaborative relationship between patient and doctor is the best, and frankly the only road, to optimum health.

The Moment, Continued

I’ve spent two weeks now at Cincinnati Children’s Hospital, partnering with ImproveCareNow colleagues here in developing opportunities for patient engagement. Yesterday, fellow PAC member Alex invited me to be present at an orientation for newly diagnosed IBD patients and their families. As I sat at the “staff” table, I was hit by a quiet wave of shock. It’s been over six years since my diagnosis. Over six years. One moment, I looked at a girl of about fourteen in the audience and saw my younger self in her. At the same time, I know I’ve changed in meaningful and (then) unimaginable ways since my diagnosis.

I had the unique chance to imagine myself as a new patient all over again and reflect on the ways in which I have developed. I have been a patient since April 22, 2008. Sometime between then and now I became a patient advocate, like all of my colleagues on the PAC. The transition is not at all necessary to live a successful life with IBD, not always anticipated, and can happen at different times for different people. I’ve rarely stopped to reflect on how, when, and why I transitioned into an advocacy role.

I’ve written before about patient advocacy, but to follow-up on Jennie’s recent reflections on her transition from patient to patient advocate, I’d like to share what the PAC has put together describing some of the differences between a patient and a patient advocate. We did our best to collect a diverse range of opinions, but we would love to hear your thoughts, too! We’ll be reading and responding to comments, so please take a moment to share your perspective. What do you think?

PAC_Patient Advocates and Patients (revised)

The Moment

Jennie at the Finish LineI 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.

Jennie