Follow The Leader

Many years ago now, I was at an IBD conference with several other patients. It was the last day of the conference, and we were sitting in a room, chatting at white-clothed tables with our suitcases at our feet. At 16, I was the youngest in the group by a couple of years – the others were a mix of guys and girls: college-students, with boyfriends and jobs and so on. The moment that is so clear in my mind all of these years later was sitting next to one girl I admired so much and bursting into tears. Alarmed (she had only known me for 48 hours, it was alarming to start sobbing!), she asked me what was wrong. Through my tears and melodrama I blubbered, “I don’t want to go home! No one else understands me like you guys do!”

Even though it sounds silly and very over the top, to my younger self, it seemed like nothing had ever been more true. I suddenly had a family of older brothers and sisters who got it, who could coach me from the sidelines and pick me up as I tripped trying to figure out adolescence with a chronic illness. And interestingly, if you asked the group why they were involved, the answer was always the same – so the younger versions of themselves would have the support and encouragement.

And it’s true – knowing someone else like you could do it means so much, it’s the I-think-I-can to the I-KNOW-I-can attitude switch, which is priceless. For me, that was the moment when I was suddenly in charge of my life again, and since then I have been fortunate enough to be that support for other people. Having mentors and people to look up to, gave me hope when things felt small and constrained, and in a lot of ways it gave me the fuel to keep going.

I am still in touch with my IBD friends from that first conference. Many of them are engaged or married, working and successful, one girl and her husband even have an adorable little boy. Yes, they are still sick, they still struggle to find the balance between patient and person, but they are living and doing an incredible job at it. Their mentorship to me is something that I will never be able to adequately thank them for, so instead I hope that by aspiring to be like them I will make them proud.


5 thoughts on “Follow The Leader

  1. As a member of the ImproveCareNow Executive Committee, I have been watching the behind-the scenes development of the ImproveCareNow Spring 2013 Learning Session. By all accounts it is going to be dynamic and engaging event! I know that many of us are excited that patients and parents will have a prominent role throughout the weekend’s activities. The whole Network should be looking forward to hearing their ideas and insights, and to engaging them in our work in more meaningful ways.

    On the final day of the Learning Session a group of Patient Scholars will be discussing strategies for encouraging open communication with patients in order to create a dynamic and mutually beneficial partnership. They are also going to talk to us about the work they have done so far on the development of ICN interventions that are aimed at improving patient outcomes. This will be an exciting way to conclude, summarize and reflect on just how far we’ve come together. Don’t miss it!

    Howard Baron

  2. Jennie – Your story is very compelling. I sense this same tension in many of the adolescents I treat. Apart from a forum such as this I have no way to hook them up to someone who could help them along as you were helped and as you choose to help. I am hopeful that your transparency will find its way into the lives of many of the kids with IBD!
    John Grunow MD

  3. Jennie – Jill and I presented today at a meeting about patient engagement. The work that you all are doing is teaching us an enormous amount. We benefit enormously from your insights.

  4. Jenny – That is such a powerful story. I also like that you’ve identified that both the older and younger versions get something special out of this connection.

  5. Jennie- you make your ImproveCareNow colleagues (and you are our colleague!) proud every day! You are helping us learn how to help patients become co-designers of our improvement work and challenging us to put patient first. Please keep teaching us how to do this well!


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