“Forgotten patients” are people who live well with a chronic illness. So well that we we barely see them. They are all but invisible as they go through their arduous day, and pass through ours.
I have advocated that we have much to learn from the “forgotten patient.” How do they do so well? It hit me again when I saw this photo below of two of my acquaintances and colleagues. I was struck by their vitality. You could not know that they both have type 1 diabetes (T1D) - and live with all that demands each and every day.
Beside living with illness, or because of it, these are very accomplished women. At the age of seven, when she was diagnosed with type 1 diabetes, Jody set her vision on becoming a doctor. Today, Dr. Jody Stanislaw helps people with type 1 all over the world via her virtual diabetes consulting practice. She has never let diabetes slow her down. She is extremely athletic, has lived in five countries and built her success step by step.
Karen, at sixty years old, has had T1D for twenty-one years. Ten years after her diagnosis she went back to school to become a certified Integrative Nutrition Health Coach and Stanford-trained peer leader. Karen teaches cooking classes and co-leads a monthly DiabetesSisters peer-mentor group. She made these changes in her life when she realized she needed the community of others who “get” type 1 diabetes, and her diabetes helped her channel her passion to help others.
Studies of people doing well with illness are few. Yet think what we can learn from these forgotten patients. How they manage their mind, body, emotions, “illness-life” within their life. How they build resilience, cultivate appreciation, design supports and essential habits, including bouncing back from frustration and relapse.
The value of this knowledge can inspire others - both those with diabetes and health providers. Often extraordinary athletes and celebrities are used to inspire us, but it doesn’t necessarily. “He climbed the Himalayas!!!” Well that’s nice but my mind says, “I could never do that!” We need as well to see people who are succeeding, others who look and seem like us.
My friend Saul, above, might straddle the amazement line, but he is an ordinary guy who got passionate about being well after his type 2 diabetes diagnosis twenty-five years ago. Saul reconstructed his life. Today at seventy-nine years old he bicycles four to five days, on average eighty miles a week, as he has done for years. He also mentors teens through bicycling.
While not everyone with a chronic illness can, or will, become a model of success - genetics, skills, resources, capacity, supports, will, economics, values all count - we should not discount that in learning how successful people do well, we can help more people be successful.
Why aren’t we studying people who do well?
When I present to health professionals at conferences I often ask, “How many of you have patients who do well?” Hands go up around the room. Then I ask, “How many of you congratulate your patients who do well?” Half the hands remain. Finally I ask, “How many of you ask these patients how they manage to do well?” Almost all the hands fall.
As a society, and maybe it’s hard-wired, we have a negative bias. We look for what’s not working rather than what is. We don’t see our negative bias because it is pervasive. For example, in diabetes care we have created distress scales, yet not success scales. Yet exploring what’s working generally yields more and better solutions than probing problems.
A psychological study of young people living with type 1 diabetes revealed sixty five percent experienced no distress. Yet the researchers went on to study the thirty-five percent who did. Imagine the wealth of knowledge that was available had we studied those who didn’t experience distress.
Two years ago when I was at the International Diabetes Federation World Congress in Vancouver Michael A. Harris, Professor of Pediatrics at the Harold Schnitzer Diabetes Health Center at Oregon Health & Science University, said in his session, “Most of my type 1 youth patients do exceedingly well.” People were surprised. How often do we hear this side of the story?
I began this work interviewing people living with diabetes to learn their story. I discovered quickly that some people struggle, but many find ways to create healthier, more productive and more meaningful lives after their diagnosis.
I would never have known this had I only looked at the literature. This is what predominates: Diabetes Burnout: What to Do When You Can’t Take it Anymore, Psyching Out Diabetes: A Positive Approach to Your Negative Emotions, Depression and Diabetes, The Mind-Body Diabetes Revolution: The Proven Way to Control Your Blood Sugar by Managing Stress, Depression, Anger and Other Emotions, Outsmarting Diabetes, Showdown with Diabetes, Living On A Tightrope: Coping With Diabetes.
Most providers’ aim is to help people cope with their diabetes. What a small goal when people are capable of so much more.
Rachel, above, is another inspirer. Like so many, Rachel takes better care of herself now than before her diagnosis. After nine years of living with LADA (latent autoimmune diabetes in adults), Rachel, at fifty-one, trains yoga instructors, runs retreats and has just written her first book due out this October, Yoga for Diabetes, How to Manage Your Health with Yoga and Ayurveda. Long a yoga enthusiast, Rachel made it her path to better diabetes management. It gives her increased insulin sensitivity, discipline, stress relief and a more positive outlook.
Personally I believe we should be sitting at the feet of our forgotten patients with reverence and curiosity. They have enacted ways to create post traumatic growth, to blossom with their condition, when post traumatic stress is healthcare’s greater expectation.
Last week 16,000 medical professionals attended the annual American Diabetes Association (ADA) conference. Five days of programs shared clinical research on the latest science and drugs. New devices lined the exhibition hall and a handful of psychosocial sessions highlighted depression, distress and eating disorders.
How many attendees left the conference inspired by how well people living with diabetes can do? How many left armed with the insights and enthusiasm to help their patients be among them?
To not study people who do well with illness cheats us all of their wisdom. And while individual stories cannot be generalized, they still teach and serve as truths. The power of people doing well, and positive stories, is that they show us what is possible.