11:30 - 11:35 amSaturday, September 17
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A partnership focused on what we have rather than what we need
Upper Lobby
A partnership focused on what we have rather than what we need
Medicine X ePatient Scholar
“The terror of sickness and old age is not merely the terror of the losses one is forced to endure, but also the terror of isolation. As people become aware of the finitude of their life, they do not... Read more

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“The terror of sickness and old age is not merely the terror of the losses one is forced to endure, but also the terror of isolation. As people become aware of the finitude of their life, they do not ask for much; they do not seek more riches; they do not seek more power; they only ask to be permitted, in as much as possible, to keep shaping the story of their life in the world. To make choices and sustain connections to others according to their own priorities.”

“According to our own priorities…”

This entire quote, and this piece of it specifically, from the book Being Mortal by Dr Atul Gawande, sum up the fundamental goal of being a patient with a chronic illness. This abstract will serve to highlight the value of and opportunity for allowing people living with chronic illness to shape the stories of our lives according to our own priorities.

Having never lived with a chronic illness prior to our son joining our family 6 years ago, we are making up our future out of our very imagination, both him and also me as his primary caregiver. We don’t know what you’re suppose to do and how you’re suppose to act, but we do know that we do not fit into the box that we are being forced into by textbooks and organizations and insurance companies. While we need to realize that there is some control that he/we must relinquish due to the simple nature of cystic fibrosis, the power struggle for leadership and ownership of our disease management is simply not productive or sustainable. Partnership is necessary.

In a fascinating TED talk by Angela Blanchard, she highlights how we, as a society, as people wanting to help, are trained to look at the problems – the lacks, gaps, needs, wants – the broken stuff. She suggests that perhaps instead of looking at all that people don’t have, we should start to look at what they do. If I can apply what Angela Blanchard says about society to healthcare, I think she is exactly right. I believe the answer lies in our ability as a team – patient and clinician, parent and child – to share what we have, and build what we can, to find what we need. What if we can’t see the solution by just looking at the problem. It is about partnership, but a different kind. A partnership focused on what we each have.

All stories matter. We patients and caregivers want to tell you what we can do and what we do know and that’s the first step on my path to a new story. This gives us hope, meaning, a sense of belonging. I think about the longstanding impact of improved partnership, and how that might contribute to successful transitions, adherence, sustainability, wellness. When chronic illness shows up in our lives and takes away some of our freedom, we truly are left trying to create a life out of only our imagination.

Erin Moore's work in the cystic fibrosis community began when her son was born in 2010. Her initial involvement was in fundraising and then she began working at the State Advocacy Chair for the Ohio Chapter of the Cystic Fibrosis Foundation. In 2012, Erin started working with Cincinnati Children's Hospital in their Pulmonary Department on quality improvement work, bringing all stakeholders to the table in designing systems and tools to better meet the needs of patients, clinicians and researchers to improve health and care in the cystic fibrosis community. Erin is a member of the Committee for Patient Engagement at the Cystic Fibrosis Foundation and works on the Committee for Patient & Clinician Engagement on the New York CDRN. She also leads the patient engagement work for the development of a Collaborative Chronic Care Network (C3N) for Cystic Fibrosis. 

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