Article Voiceover:
This is the 6th episode of the “What’s Her Problem?” Interview Series. I hope you enjoy it and would love to hear your feedback!
Note: Closed captioning and the full transcript are available after you click through to the video.
One of the people I admire in the world of patient advocacy, especially as a woman living with heart disease, is Gwen Mayes. We first met as fellow Online Discussion Group Leaders for the Hypertrophic Cardiomyopathy Association and have gone on to participate in several other groups and activities together, including our role as WomenHeart Champions.
Gwen has written a new book called “More Person Than Patient: Finding Your Purpose and Power with Chronic Illness,” which is being published by Mayo Clinic Press on November 3, 2026.
Publisher’s Weekly has already reviewed it as “Empathetic and grounded, this is an empowering resource.”
I couldn’t agree more.
In this episode of the “What’s Her Problem? Interview Series,” Gwen and I dug into several of the topics in “More Person Than Patient,” including: the process of writing the book and what she learned from interviewing other patients (including me!); our shared experience of being diagnosed with Hypertrophic Cardiomyopathy (HCM); how to build your own “Survive-to-Thrive Tooklkit” for life with chronic illness; how people with chronic illness who feel like their diagnosis defines them can be more person than patient; Gwen’s journey to patient advocacy; how we both approach personal medical storytelling in our advocacy activities; and whether or not we have regrets.
I hope you’ll watch, listen to, or read the transcript for this wide-ranging conversation.
As a reminder, there are NO paywalls for the Interview Series. EVERYONE has access to this video/audio on Substack, YouTube, and all podcast platforms in its entirety.
But your support is incredibly important so I can keep producing long-form interviews like this and my regular weekly content. Every dollar helps!
In fact, Paid Subscribers already got a sneak peek at one of my two quotes from Gwen’s book in their first “What’s Her Problem? Insider” email last month.
For more perks like that, including the opportunity to ask questions in advance for my next Interview Series Guest, you can subscribe for $6/month or $60/year.
And if that’s not a great enough deal, Gwen has made a very generous offer:
The FIRST person who upgrades to a Paid Subscription to “What’s Her Problem?” after reading this email will get a FREE signed copy of “More Person Than Patient.” So, act now!
You can also show your support, in any amount, without committing to a Subscription.
Enjoy my chat with Gwen, and remember…you are more than your diagnosis!
Each issue of “What’s Her Problem?” includes questions for further discussion. Leave a comment below!
This week’s questions:
Do you ever feel like chronic illness has consumed your identity? If so, how do you get back to feeling more like a person than a patient?
Up Next:
A look at the financial cost of chronic illness and disability. A companion piece to my recent post, Upon Review, I Am Still Disabled.
Show Notes:
0:00-0:42 Welcome back to the What’s Her Problem? Interview Series
0:42-2:38 Gwen Mayes’ Bio
2:39-2:56 Greetings between Debra and Gwen
2:56-6:22 The process of writing “More Person Than Patient: Finding Your Purpose and Power with Chronic Illness”
6:23-10:05 What Gwen expected to learn during her book research vs. what she ended up learning
10:06-11:46 Debra and Gwen’s shared experience with a Hypertrophic Cardiomyopathy (HCM) diagnosis
11:47-17:44 Building your “Survive-to-Thrive Toolkit” and finding your sense of inner peace
17:45-26:44 Gwen’s advice for people with chronic illness who feel like their diagnosis defines them. How can they be more person than patient?
26:45-35:15 How Gwen became a patient advocate
35:16-41:30 Question from a Paid Subscriber (Upgrade to a Paid Subscription at whatsherproblem.substack.com so you can ask a question in advance for a future Interview Series Guest): Are there particular challenges to advocating for invisible or minimally visible illnesses and disabilities?
41:31-49:16 Does Gwen have any regrets about how she handled her own chronic illness diagnosis?
49:17-50:09 Other topics in “More Person Than Patient”
50:10-51:37 Wrap-Up and how you can follow Gwen
51:38–52:23 Outro
Buy Gwen’s book:
“More Person Than Patient: Finding Your Purpose and Power with Chronic Illness”
Follow Gwen:
Instagram: https://www.instagram.com/gwenmayes/
Facebook: https://www.facebook.com/gwen.mayes
LinkedIn: https://www.linkedin.com/in/gwen-mayes-jd-mmsc-4511178/
WomenHeart: womenheart.org
Hypertrophic Cardiomyopathy Association: 4hcm.org
Gwen’s Bio:
Gwen Mayes is a former physician assistant, attorney, and staunch patient advocate having lived with a rare, genetic heart condition – hypertrophic cardiomyopathy – since birth. Following an extensive 30+ year health policy career in Washington, DC, she founded GwenCo Health, a consulting firm devoted to bringing the patient’s real-world experience to the forefront of regulators and health policy decision-makers. Prior, she was the head of Advocacy Relations for Bayer US Women’s Healthcare from 2013-2019. During the passage of the Affordable Care Act, she was the EVP of Public Policy for the National Patient Advocate Foundation; immediately prior she was the first Director of Government Affairs and Reimbursement for Abiomed, an innovator in cardiac device support, between 2005-2010.
Currently, Gwen serves as the only Patient Representative on the Oversight Committee for the American College of Cardiology’s National Cardiovascular Data Registry, a WomenHeart Champion since 2005, a volunteer for the Hypertrophic Cardiomyopathy Association, and Advisor to the Patient Centered Outcomes Research Institute’s Clinical Effectiveness Research Committee.
Gwen received her AB in Biology and Pre-Medical Studies from Transylvania University, her Masters of Medical Science from Emory University, and her JD with honor from the University of Maryland.
Her first book, More Person Than Patient: Finding Your Purpose and Power with Chronic Illness is being released on November 3, 2026, by Mayo Clinic Press.
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