By Hope Warshaw, MMSc, RD, CDE
The expression, “When life gives you lemons, make lemonade,” encourages optimism and positivity in the face of life’s challenges. For sure, the diagnosis of diabetes can be a life challenge. For our blog series, Making Lemonade from Lemons, we’ll profile people with diabetes (PWD) who’ve squeezed lemons from the diagnosis of diabetes and made lemonade - they exemplify this expression. These PWD make living with diabetes just a bit easier for everyone and show the world just how well PWD can live. This profile features Stephen Shaul, a person who has lived with diabetes for 27 years. Over the last decade Stephen has found a variety of ways to engage with and support others with diabetes both locally and internationally.
Q1. Hope: Please share a few details surrounding your diagnosis.
A1. Stephen: In 1991, at the age of 28, after a long illness and significant weight loss, I was diagnosed with type 1 diabetes (T1D). I spent three days in the hospital and got basic diabetes education, a diet to follow, and insulin and syringes. Out into the real world I went. I managed my diabetes exactly the same for 18 years. I’m now 57 and have lived roughly half my life with diabetes. But, about a decade ago things changed. I discovered others with diabetes and the tremendous value of peer support.
Q2. Fast forward. Tell us how you fit diabetes into your life today?
Reflecting… a lot has changed in life over the years, but that’s not all bad. I’ve learned to embrace change. I’m interested in new technologies and strategies to manage my diabetes. I’ve found that peer support makes a huge difference in my care and in overall outlook on life.
Q3. When did you learn about and become involved with the diabetes peer support community?
In 2011, my wife heard a radio interview about artificial pancreas research. She encouraged me to, “find a blog!” The next day, I googled “diabetes blogs” and opened my eyes to the wonderful Diabetes Online Community (DOC). Speeding ahead, I began my own blog – Happy-Medium.net, and became friends with PWD who now mean the world to me. I’ve also met diabetes healthcare providers who never judge my worth by the number on my CGM.
Q4. What activities and organizations are you involved with that feeds your desire to give back?
Oh, so many! I’ve had the good fortune to advocate on important diabetes issues before congressional staffers on Capitol Hill with Diabetes Patient Advocacy Coalition (DPAC). For the last two years, I’ve served as co-chair of the Diabetes committee on my state’s (Maryland) Advisory Council on Health and Wellness, where we’ve been working on our first Diabetes Action Plan. I’ve enjoyed participating in, and occasionally moderating, the #DSMA Twitter chats on Wednesday evenings from 9 – 10 pm ET. (I encourage people to tune in.)
In late 2013 my wife and I started awarding medals to PWD who meet their athletic goals, big or small. We call it Champion Athletes with Diabetes. It's not a formal organization, just something we do to recognize the effort it takes to live with diabetes and remain active. This blog provides the details.
Q5. How do you suggest people discover opportunities to engage locally, nationally or internationally to connect, participate in and serve the community?
At the national level, start with non-profits (JDRF, ADA, Diabetes Sisters, DPAC). They all have ways to engage in person and online. Then discover others. States have opportunities to serve on committees or testify on diabetes-related legislation. Locally, look for meetup boards or websites that get PWD together. The best part of engaging is that today there are so many ways to do it, no matter where you live.
Q6. What has been your biggest glass of lemonade to date?
Here’s two. The first: My wife and I have given away 85 Champion Athlete with Diabetes medals on four continents. The second: I will always cherish my time as a facilitator at the Diabetes Unconference. This was the first diabetes event that brought together adults with diabetes and their loved ones, for peer-to-peer discussions on EVERYTHING! We held conferences for three years. I miss this annual event all the time, but am pleased to say that Unconference alumni gather on occasion for reunion weekends. The bonds we’ve formed are unbreakable.
If you’re a person who believes you’ve made lemonade from your diabetes diagnosis, or if you know someone who has, let us know at firstname.lastname@example.org for a chance to be featured.
Hope Warshaw, is a Registered Dietitian and Certified Diabetes Educator. She has spent her career involved in diabetes care and education and has authored several books published by American Diabetes Association (ADA), including Diabetes Meal Planning Made Easy. She was President of the American Association of Diabetes Educators (AADE) in 2016. She actively promotes the value of peer support to people with diabetes, caregivers and healthcare providers.
Hope Warshaw was compensated by Tandem Diabetes Care for her contribution on this topic. However, she created the content and it is based on her personal knowledge, experiences, and observations.
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