Patient Stories

For Some Patients, Writing is Engagement

People write for different reasons: to examine experience, sharpen thinking, share lessons learned, advocate for others, and inspire action. In all cases, writing engages us in reflection and offers a way to engage with others.

Health care social networks, like Inspire and Mayo Clinic Connect, encourage patients and caregivers to use writing and other media to engage by reflecting on their experiences and sharing their stories.

As part of its efforts to showcase patients’ perspectives, Inspire collaborated with Mayo Clinic on “Experts by Experience,”a series of first-person online essays about living with serious medical conditions. The essays, which inform readers about the authentic experience of health and illness, appear online on the Mayo Clinic Social Media Network (MCSMN) blog, and are shared across many online channels.

The range of voices and stories in the series demonstrates that patient engagement is as varied as the human experience. Patients engage with their medical conditions by becoming educated and seeking care that is effective and compassionate. Others seek respect and understanding as they engage with a world of strangers who fear and judge things they don’t understand. Some authors engage by turning bad experiences into lessons about treating others notas they have been treated but caringly, understanding that cruelty may be a defense against pain. Others engage with serious disease by accepting it as a companion through days that may be affected but not defined by illness. And others devote themselves to advocating for other patients and families.

Using language to connect

Experts by Experienceauthors participate in a broad community of people who use language to reflect and engage with readers about the intersections of health with all aspects of their lives. Beyond immediate interactions between patients and their clinicians and health care organizations, patient engagement includes being aware of the effects of illness and the choices we all make about how to work with what we have. Engagement begins with having an active attitude about our experience of the world. Writing is engagement; it’s one way to navigate the world purposefully whether saddled with illness or not.

This kind of writing has the capacity to improve health care in many ways as well as the lives of authors and readers. Introducing the Experts by Experienceseries, MCSMN’s director, Lee Aase comments:

Everyone has a story to tell. It has been well-established that telling one’s narrative helps build hope and connections.

Introducing a collection of similar essays, psychiatrist William DeJong refers to the authors as describing “the extreme human experience” of living with illness. While it is true many of the essays tell the stories of people living with major, sometimes life-threatening challenges, their extraordinary experiences offer lessons that apply to everyday life and can lift the spirits of us all.

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EngagingPatients has had the privilege of offering stories told by people who are part of the Inspire network, including:

Renata Louwers, Patient and Caregivers Engage Without Calling It “Patient Engagement”

Lilly Stairs, Engage Patients as Consumers, the AirBnB Way

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Susan Carr Susan Carr is a medical editor and writer specializing in patient safety and engagement. In addition to curating the EngagingPatients blog, she produces publications for the Betsy Lehman Center in Boston and the Society to Improve Diagnosis in Medicine. Susan lives and works in Lunenburg, Massachusetts.

Susan Carr has 25 post(s) at EngagingPatients.org

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1 Comment

  • Sally James says:

    I very much agree with this. In my work in health literacy, some scholars say that “speaking” with others about a diagnosis actually cements the concepts in the patient’s mind. Conversation is perhaps an essential part of learning.

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