Dialoging about Diabetes: PWDs Offer Ways to Improve Communication and Care #7 Beverly S. Adler, PhD, CDE
As a diabetes educator/healthcare provider (DHCP) I’ve observed that the rapidly growing world of the Diabetes Online Community, the DOC for short, is helping people with diabetes (PWD) and their loved ones find support and feel supported. People are connecting, building relationships and feeling more positive about the challenges of managing their diabetes. I’m delighted to see this trend!
As a DHCP I’ve long realized that I can’t walk a mile in a PWD shoes. I can’t know what it is like day in, day out to deal with this challenging and relentless disease. But, what I do know is that we can learn from each other to change the dialog between providers and PWD to be more positive, more supportive. Goal one with these Dialoging about Diabetes interviews with diabetes activists is to help make living with diabetes…just a bit easier. Goal two is to enhance the two-way street – to help more PWD get connected and encourage more DHCPs to open the doors of social networking to PWD.
Here’s my dialog with Beverly S. Adler, PhD, CDE, a PWD for 38 years and a clinical psychologist who specializes in treating the emotional issues of PWDs. Dr. Adler, or "Dr. Bev", as she likes to be called, recently had two books published My Sweet Life: Successful Women with Diabetes and My Sweet Life: Successful Men with Diabetes. These books are compendiums filled with the stories of women and men who are living with diabetes (mainly type 1). Read my review of these books.
HW Q: Wow! There are powerful stories and life lessons in both of your books. Let’s start with you telling me what you most want to communicate with these books to others who deal with having diabetes or caring for/sharing life with a PWD?
BSA A: Thank you Hope. The stories in both books all start out with the authors' shock of being diagnosed with diabetes - a very common reaction. By the end of each story, at some point, there is a shift in attitude that occurs, which I call the "pivotal moment", when a person comes to the realization that they can not only survive with diabetes, but they can thrive with diabetes. At this time of acceptance, a person’s attitudes change. They begin to see their chronic illness just as a part of who they are and that it doesn’t define the whole of who they are.
HW Q: Please share a few of the most powerful stories from Successful Men with Diabetes and let us know why you chose these?
BSA A: First of all, I appreciated the honesty which each author shared in his story. It's hard to choose from these 25 terrific stories, but these summaries are just three of the most heartwarming and inspirational:
R. Keith Campbell, RPh, CDE, has successfully lived with diabetes for 63 years and has accomplished so much in his life. He’s now a Distinguished Professor in Diabetes Care/Pharmacotherapy and was named the "Outstanding Health Care Educator in the Field of Diabetes in the US" by the American Diabetes Association. Keith has been a pioneer in the area of diabetes and pharmacy. He is a wonderful role model for living a long and healthy life. Among the lessons he teaches is to: "be positive and passionate."
I love the chapter Jim Turner contributed. He has successfully lived with diabetes for 42 years. Jim is an actor and was one of the original co-hosts for dLife TV (a weekly cable television series that was dedicated to empowering the millions of Americans living with diabetes). He has a great sense of humor that he uses as a positive coping strategy through all things in life, including his diabetes. His chapter incorporates his sense of humor as he encourages others to be responsible for their diabetes self-care.
Another incredible chapter was written by Jay Hewitt. He's a lawyer and motivational speaker. Jay's story illustrates how his determination and perseverance dominated his quest to be an Ironman triathlete. The Ironman is a grueling competition yet Jay was triumphant in reaching his goal. Jay also competed as a member of the US National Long Course Triathlon Team. Jay's motivation was to prove that diabetes couldn't stop him from achieving his goals.
HW Q: Please share a few of the most powerful stories from Successful Women with Diabetes and let us know why you chose these?
BSA A: It's hard to choose just three stories from the 24. I was happy to include Brandy Barnes' story. When I first had the inkling to write this book, I looked on the Internet. To my amazement, I found DiabetesSisters, created and founded by Brandy Barnes. I invited her to share her story. Brandy described various jobs she had and skills accumulated along her life journey as she searched to find her "true-calling" – that turned out to be Diabetes Sisters."
Dr. Jen Nash, is a Clinical Psychologist with T1D who lives and works "across the pond" in the UK. She developed diabetes at age six. She described herself as feeling scared and "different." She chose to study psychology to help figure herself out. She began to understand how her thoughts and emotions were affecting her self-esteem. As she gained confidence, she created the website "Positive Diabetes" to help others cope. Her sense of being "different" ultimately helped her have the courage to create something that benefits PWD.
Kyrra Richards' story is one of my favorites. Her writing style is humorous but her story is serious. Kyrra, a beautiful young woman, was a model and dancer who aspired to become an actress. Her career was just taking off when she was diagnosed at 24. Her life changed dramatically. Among things she felt very unhappy about was the lack of style of the bag to hold her testing supplies. She set about to give diabetes a makeover and became an entrepreneur with a line of diabetic products and accessories. It’s called "Myabetic."
HW Q: After reading all of these Success Stories and with your personal experience of living life with diabetes, what do you feel are the top three keys to successful life with diabetes?
BSA A: As a cognitive-behavioral therapist I place importance on two things we can control - our thoughts (cognitions) and our actions (behaviors). If you want to live successfully with diabetes, you need a positive attitude. You need to put your diabetes in perspective - diabetes may be difficult to manage, but it is do-able. Take life, and your diabetes, one day at a time. One of the most important keys for success is to recognize that nobody is perfect and that nobody can control their diabetes perfectly. Your goal is to do the best you can. Let go of feelings of guilt and anger.
Secondly, if you want to live a long healthy life, then you need to practice a healthy lifestyle. Make healthy eating a priority. I recommend people eat what they like and don't eat what they don't like. However, be mindful of what you're eating to enjoy your food fully. It's also important to be physically active. You don't need to set your sights on completing an Ironman triathlon (like Jay Hewitt). Start with "baby steps" and build your activity level up. It has the dual effect to lower blood sugar and release endorphins which elevate your mood. Win-win!
The third key to a successful life with diabetes is endorsed by all my contributing authors. That is a spiritual component. I personally believe that diabetes is a blessing in disguise. Diabetes is an illness that I can live with. Diabetes has become the basis for my career as a clinical psychologist. If I didn't live with diabetes, I'm not sure I would have chosen to live such a healthy lifestyle. After 38 years with diabetes I am proud to say that I am complication-free. My contributing authors discuss the strength of character they developed as a result of accepting and meeting the challenges of living with diabetes. We are grateful that diabetes has taught us lessons in courage and determination.
HW Q: How and why do you encourage PWD to gather and gain emotional support as part of their diabetes care? Do needs vary between people and at different times through the course of their disease and life experiences?
BSA A: Yes, needs vary at different ages and stages of life. As a therapist, I strongly endorse therapy groups or support groups as a means toward empowerment. One of the primary advantages of a group is that people feel less alone. They can play an important role in education and behavioral change.
When I was diagnosed with T1D in 1975 there was no Internet with information or role models. I felt very isolated and alone. Things are totally different today with the Diabetes Online Community, websites, blogs, self-help books, etc.
HW Q: How can DHCPs, within the context of all we want/need to accomplish in the minimal time we have with people, be more human and make room for feelings and emotions?
BSA A: DHCPs have a lot on their plates within short appointments. But they need to recognize the signs of a PWD having difficulty coping with self-care. Providers may need to allow more time with certain PWD to ensure clear communication of information and maintenance of relationships. Stress and coping can be evidenced by poor glycemic control. More so, the likelihood of depression doubles with diabetes. Depression and anxiety have been associated with high A1Cs and denial is also associated with negative health outcomes. If the DHCP sees evidence of dysfunction, they should refer the PWD to a clinical psychologist (or social worker) preferably with a specialty in diabetes.
HW Q: Why and how do you feel the Diabetes Online Community (DOC) has had such a positive impact on many of the people whose stories are shared in My Sweet Life?
BSA A: The DOC and social media in general provide the same benefits as a support group only updated within this new technology medium. The DOC focuses on educational, social and emotional support. It provides a feeling of normalization - people are comforted to find that they are not alone in their struggles. PWDs share their day-to-day experiences to provide practical help. Talking to other people with diabetes, hearing their stories, and sharing their own with them can help to decrease the feeling of social isolation. Other members of the DOC may also serve as role models. One can learn tips and tricks from them for better management of their diabetes.
HW Q: Why and how should DHCPs connect PWD and their care givers to the Diabetes Online Community? If not the DOC, what are a few other supportive venues you encourage DHCPs to provide?
BSA A: The DOC is a wonderful outreach for support especially if you live in a location without a relevant support group. In addition to the DOC, I would recommend that PWDs seek out local hospital support groups or diabetes education seminars. Some communities have fundraising events for diabetes (walking, running, biking, swimming, etc.) which is a fun way to connect with others and join a worthy cause. I would encourage PWDs to stay informed reading magazines and books which have articles about medical innovations or healthy recipes or stories of inspiration to motivate them.
HW Q: What in your heart do you want your books to accomplish for PWD and DHCPs?
BSA A: My hope is that my books will be read by newly diagnosed PWD to help them accept their diabetes. I hope the veteran PWD who can use a boost in their morale finds value in the books. And lastly I hope that DHCPs recognize and appreciate the wisdom and advice in the books and that they recommend them to PWD. The contributing authors were chosen for their diversity - whether the type of diabetes they have, the variety of geographical locations they live in, and their range of careers - some have more notoriety, some less - but all are very successful in their personal and professional lives. The cover design art work for both books symbolizes the journey that each of us is on - with twists and turns in the road. The theme in both books is that diabetes is a blessing in disguise. I hope readers will feel empowered to live their own successful lives!
Thanks Dr. Bev! I appreciate your time and your commitment to making life with diabetes just a bit sweeter. If you want to connect with Dr. Bev, she can be reached via her website at: AskDrBev.com, via Twitter at @AskDrBev or via LinkedIn.