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Riva Greenberg

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The Power of Patient-Expert Books

Posted: 01/04/2013 2:15 pm

When the proposal for my second book was being shopped around in 2008, my book agent heard again and again from publishers, "We need a doctor's name on the cover!" As if a book about an illness, and treating it, is only credible if a credentialed health care professional wrote it.

Today, more and more books are being written by patients -- well-educated, informed patients who manage their illness successfully and have experience, practical knowledge and insights to share with other patients.

As the new year incites a rush to become a "new, better and healthier you," we often do so learning from our peers. When it comes to illness-warranted behavior changes, as like seeks like, it's often easier to make changes learned from fellow patients with whom you share the experience of a disease. Like support groups and mentor programs, this is fertile soil for positive behavior change. So, I applaud the rise of patient-authors.

Patient-authors also narrate the experience of illness. That is why I hope health care professionals (HCPs) are also reading books written by patients. A book like No-Sugar Added Poetry, for example, can give HCPs immediate access to some of the emotional landscape of living with diabetes.

There is, in my mind, no easier or quicker way to tap into the experience of illness -- what patients grapple with, how they feel, and the practical things that must be managed every day -- than by reading a patient-written book.

When clinicians do, I believe they will become more mindful and compassionate and the relationship with their patients more trusting. And that can lead to better outcomes for both.

On the diabetes front, I read two new patient-written books late last year, including Amy Mercer's second book, The Smart Woman's Guide to Eating Right with Diabetes. It's a collective of wisdom and tips from several smart women with diabetes, including its author, sharing how they manage their blood sugar and carbs while still eating things they love. Her previous book is The Smart Woman's Guide to Diabetes.

I also read Ginger Vieira's second book, Emotional Eating with Diabetes. Her first was Your Diabetes Science Experiment. As a wellness and diabetes coach, Vieira guides readers to develop a healthier relationship with food, and the book comes with worksheets and coaching questions. "When you live with diabetes," says Vieira, "every meal can feel like work and often comes with guilt or shame over any imperfect choices. Unless you live with this disease yourself, it's impossible to know the day-to-day emotional weight food carries living with diabetes."

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My own third and just-released book, Diabetes Dos & How-Tos, is what you don't get from 12-minute visits with your doctor, yet need: a simple, clear, easy-to-follow and practical guide of the small, yet powerful steps to achieve your optimal diabetes health. The book covers managing food, medicine, fitness and staying positive. I felt compelled to write this book after traveling the country and seeing how many patients are confused and overwhelmed by their diabetes, and as a consequence they suffer complications needlessly. Diabetes Dos & How-Tos is also useful for health care providers to more fully engage and involve patients in their care and guide them through their own chosen, doable actions.

Earlier last year, I read Chuck Eichten's The Book of Better, a treatise that we'll never get it perfect, but we can get it better; Lynn Crowe's The Diabetes Manifesto, that shared her personal struggle; and an anthology of patient stories in Beverly Adler's My Sweet Life: Successful Women with Diabetes. Her follow up, My Sweet Life: Successful Men With Diabetes, is on my to-read pile.

The power of books written by patients is that you get the inside view of living with illness and practical, real-world guidance on what works. The power of books written by patients who are also medical professionals offers something again -- medical expertise with empathy. On my bookshelves are the works of certified diabetes educator/patient/authors Gary Scheiner, Sheri Colberg, Wil Dubois and Joy Pape.

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Matthew Lore, the editor who bought my second book that turned into 50 Diabetes Myths That Can Ruin Your Life, in 2001 published the first of two books in a series written by people he identified on the cover as "patient-experts." One of those books was Gretchen Becker's A Patient-Expert Walks You Through Everything You Need to Learn and Do: The First Year Type 2 Diabetes. It's still one of the best-selling diabetes books, as is patient-expert Jenny Ruhl's Blood Sugar 101: What They Don't Tell You About Diabetes.

Lore told me through an email:

"I gleaned from message boards early on that patients wanted to communicate with each other, and that well-informed patients, with a gift for communicating what they had discovered about their condition, were a legitimate source of credible and meaningful information that could benefit others with the same or a similar condition."

Lore was right. I find it confirmed every time I read a patient-expert book also outside of diabetes: Richard Cohen's Blindsided, about his multiple sclerosis and cancer; Cohen's and Jill Sklar's books that chronicle several patient experiences, Strong at the Broken Places and The Five Gifts of Illness, respectively; Jill Bolte Taylor's My Stroke of Insight, about her massive stroke; Kathryn Greene-McCreight's Darkness Is My Only Companion, about living with bipolar disorder; Kay Redfield Jamison's An Unquiet Mind, about her manic-depression; Temple Grandin's The Way I See It, about her Asperger's; and Michael J. Fox's book, Always Looking Up, about his living with Parkinson's disease.

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Having Type 1 diabetes himself, Lore knew the value of patient-experts and the power of their books. For patients, it's connection, shared learning, support, and inspiration from which to make positive changes. For health care providers, invaluable insight into the everyday lives of patients that can transform how they work with patients.

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Riva is the author of Diabetes Dos & How-Tos, 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It and The ABCs Of Loving Yourself With Diabetes. Riva speaks to patients and health care providers about flourishing with diabetes. Visit her website DiabetesStories.com.

 

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