Can you all believe it’s been a full 10 years since the Behavioral Diabetes Institute (BDI) was established in San Diego, CA? We neither. And neither can the organizers, apparently.
We’ve long been fans of the BDI and what it’s done to increase the resources and conversation about the emotional and psychosocial aspects of living with diabetes — from Dr. Bill Polonsky’s focus on diabetes burnout and depression, the pocket-sized D-Etiquette Cards on talking to PWDs, to the spouse and partners’ program launched last year. Good stuff they’re doing!
When we called Dr. Susan Guzman, BDI head of clinical services, recently to check in, she was surprised to be reminded of the institute’s anniversary. After some reflection, here’s what she had to say on ten years of helping PWDs cope with this oft-overwhelming disease:
A Guest Post by Susan Guzman
BDI was founded in 2003 in an effort to help people with diabetes live healthier and happier lives by addressing the psychological aspects of diabetes. In the 10 years since the founding of BDI, we have had the opportunity to meet with thousands of people with diabetes. Hundreds of thousands of people in many different countries have read our print materials. Several hundred have participated in the research that we have conducted. And we are grateful to all of these people who have reached out to us and been part of BDI’s legacy.
Over this decade in my work as a diabetes psychologist, I have learned some important lessons from the many people with diabetes I have had the opportunity to work with: about the challenges of life with diabetes, what seems to really be effective in making a difference in people’s lives and the enormity of the work we still have left to do.
Lessons I’ve learned in this first decade:
- One of the most important lessons I have learned is to become a keen observer (and admirer) of the strengths that people have developed to get them through the challenges they face with diabetes. Sometimes, people lose sight of their strengths and get lost in a sense of what is “wrong” with them. One can end up feeling like a collection of frustrating numbers, body parts that don’t work right, and losses from life with diabetes. Perseverance, a sense of humor, courage, wisdom, a proactive attitude, willingness to try new things, persistence, creativity, forgiveness, adaptability, assertiveness, and acceptance are some of the key strengths that I have seen people use to navigate life with diabetes. Those who are having a tough time often just need help seeing their own strengths and finding new ways to put them into action. When things are going wrong, play to your strengths!
- “What has life with diabetes been like for you?” I have learned that far too few have ever been asked this question. When trying to help someone, asking this question and really listening to the answer is the best way to understand not only what the person’s challenges are, but also what the solutions are. There are good reasons why people struggle with diabetes. Listening to what obstacles get in the way can lead to targeted strategies to help people overcome these obstacles.
- The “care” in diabetes care is the most important component to helping someone achieve wellness. Care generates from a kind and knowledgeable healthcare professional, connections with others who have diabetes, support from family and friends, and most importantly YOU as the person with diabetes. Care for yourself in your daily choices, respond with kindness in your self-talk when you have a frustrating result or have made a mistake, and remember you are worth all of this hard work.
- I now understand the importance of acknowledging that we, as healthcare professionals, don’t have all the answers and have made some pretty big mistakes along the way. I have met many people with type 1 diabetes, now in their 50s and older, who were told (sometimes as children) that they would be dead by the age of 30. I hear the damage that statement caused in so many lives and I wonder about the people that I don’t hear from, that never made it to their 50s because they didn’t see any reason to bother with all of the hard work of diabetes care. Did you know that with modern technology and treatment people with type 1 diabetes can live as long as people who don’t have diabetes? That’s a pretty big oops! And, I have heard from many people with type 2 diabetes that they were told they “failed” at their lifestyle changes when it was time to start insulin. And, as a result, they avoided starting insulin and for far too long. Who wants to feel like a failure? We now know that loss of insulin production is part of the natural course of type 2 diabetes over time. Needing insulin does not mean a person has failed; it simply means its time. The more we learn about diabetes, the more we realize what we don’t know.
- There is so much more work to do. Too many people still don’t know the benefits of good care, feel doomed to suffer from complications, are unable to overcome obstacles to manage their diabetes, and suffer from depression. Too many healthcare professionals blame people for less-than-perfect control, are too quick to lecture with scary diabetes statistics, and don’t understand how hard the work of diabetes care can be. Too many loved ones feel helpless watching someone they care for struggle with diabetes, don’t know how to be helpful and feel alone with their worry. And, there are way too few resources to help people who are facing these problems. Frankly, these are the kinds of things I lose sleep over.
- A goal I have for the next decade of BDI is to promote a change in the way we talk about diabetes. Shame and blame are way too prevalent in our conversations about diabetes and can lead to some very unhealthy and unhelpful behaviors. “What did you do wrong?” Asks the loved one, parent, doctor or yourself. “You did this to yourself!” say many in response to people with type 2 diabetes or those who have developed complications. Ultimately, feeling shamed and blamed leads many people to hide, avoid taking action, feel guilty, discouraged, angry and even hopeless. I feel confident we can make progress in promoting a community where all people with diabetes feel encouraged, supported and cared for. It will lead to much better results than pointing a finger.
As an organization, BDI has learned a great deal about the psychological aspects of living with diabetes and has had the opportunity to help many people. Yet, we know our work is far from done. In the near future, BDI will introduce a number of new services, including e-learning courses, a new website, and other ways of reaching more people over the next ten years.
We invite you to take part in our new offerings and join us in celebrating BDI’s 10th birthday, on Aug. 28, 2013!
Like you, Susan, we’re also very excited to celebrate this milestone for the BDI and can’t wait to see what comes next. Thank you for all that you do!!