We’re huge supporters of the Behavorial Diabetes Institute (BDI) and the efforts of this great San Diego-based non-profit to embrace the emotional and psychosocial side of diabetes. That’s why the recent news about the BDI’s financial struggles has been tough to hear.
Director of the BDI is of course the famous Dr. Bill Polonsky, but he’s also depended a lot on co-founder Dr. Susan Guzman, who was instrumental in launching the organization in 2003 and helping it grow through the years. Today, Susan shares some inside details on the changes within BDI since late last year, how they affected her personally, and how it’s all led her to the creation of a new diabetes-psychology campaign that she needs our community’s help with.
A Guest Post by Susan Guzman
Almost exactly a year ago, we were celebrating and reflecting on the 10-year anniversary of the Behavioral Diabetes Institute (BDI), where I’d served as co-founder and Director of Clinical Services. As it turns out, that 10th year of BDI proved to be a difficult one.
We had a major financial setback in December and in order for the organization to remain afloat, the patient programs that we offered for the last decade needed to be immediately suspended. And, I lost my job. Almost overnight, what I had devoted my career to as a psychologist had to be put on hold and the people enrolled in our classes and workshops were, once again, without services.
Of course, an ongoing goal of the organization is to obtain funding to restore and further develop programs and services for people with diabetes. BDI remains a resource for people through our website and written materials (like the diabetes etiquette card). The BDI’s research projects and healthcare professional training are thriving and the mission of the organization goes on.
Though my role has significantly changed, I remain active at BDI and serve on the board of directors.
After this setback at BDI, I did much soul searching about where I wanted to take my career moving forward. Many times, I re-read my guest post at DiabetesMine from last summer, reflecting on the lessons I have learned from people with diabetes who I had the opportunity to help. While I briefly considered going in a completely different direction as a psychologist, I could not ignore how much I love my work in the diabetes community. I am passionate about helping people with diabetes and feel called to do more. What I wanted to achieve is incomplete.
I don’t have diabetes, but I love hundreds of people who do. (Shhh — As a psychologist, I’m not supposed to say that out loud.) They are diverse people who fall across the whole spectrum of diabetes: young and old, type 1 and type 2, low and high A1Cs, newly diagnosed and those with 50+ years, athletes to couch potatoes, those who embrace diabetes and those who try hard to ignore it. Good people doing their best every day with what is in front of them.
It is because of all of these people that I feel compelled to do more. Every day there are too many missed opportunities to explain diabetes correctly (news articles, bad jokes, doctor visits, even casual conversations). I get very frustrated when I hear type 2 diabetes described as the “obesity version” of diabetes. Why do we keep replaying that old tape when we have so much evidence that genetics, environmental factors, and other biological factors have a key role in the onset of type 2 diabetes? Why do people “suffer” with type 1 diabetes and why is it labelled the “bad” or “severe” kind? Is there a good kind? Why is anyone who struggles with diabetes ever written off as “non-compliant”? Do we really believe that responding to people with messages of blame, judgment and fear will help?
I feel compelled to try and face these challenges and make a difference. But, what can I do? I am one person and what needs to happen is a movement. It would take all people with skin in the game to start to challenge the status quo, speak up, be brave, come together, spread knowledge, face personal biases/prejudices, and care.
Now, this is the part of my story where the universe threw me a bone!
At the beginning of the year, I met with lots of professionals who I have collaborated with over the years to get their input on my ideas for a movement in diabetes. One of the people I met with is Justin Gardner, a really smart, energetic and creative marketing expert who I have worked with on other diabetes-related projects. I wanted to pick his brain about this idea. Justin immediately had lots of good input and offered the help of his budding healthcare focused marketing agency, BLDG Health in California. The plan he helped me develop for the movement is technology driven – his area of expertise. So I gave up my flip phone and welcomed in 2014.
Partnering with BLDG Health, we are initiating a national movement to reduce the stigma of diabetes and promote a change in the way we think and talk about diabetes. We would like to see the national conversation about diabetes move away from generic over-generalizations, fear and blame to one based on facts, empathy and encouragement. The goal is for all people with diabetes, regardless of type or level of management, to feel better understood, engaged, and supported. Similar movements representing other diseases/health conditions have been highly successful and, as a result, have rallied others to respond with more understanding and support. We want to do the same for diabetes.
My new title: Dr. Susan Guzman, Founder and CEO of Diabetes Psychology Associates (site’s currently under construction).
We want people to understand and have empathy for what makes diabetes hard. Diabetes is a chronic illness that never goes away. It requires constant effort. There is no finish line to cross. Most people with diabetes never have the experience of doing well enough managing their disease. And, because most people without diabetes have no idea what a big effort it is, there aren’t enough of us cheering for those who live with diabetes. Through this new initiative, we want to create a model of empathy and engagement of people with diabetes that could take root in healthcare, the Pharma/device industry, and within greater society.
At this point, we haven’t fully finalized the direction we want this movement to go. We want the Diabetes Community to help guide us, on everything from the campaign name to the corresponding messaging that will define this national movement we are planning to launch in August. You can help us, by voting online and raising your voice in how you’d like to see this move forward.
Once the name is picked, the diabetes community will define the movement and which messages resonate and take hold. Welcoming all of the diabetes community, creating a safe place to speak up and get support, engaging the online diabetes community, and developing partnerships with diabetes non-profits will be key to making this movement successful. These important steps will get launched at the end of August along with the new name, website, and online platform.
There is a great need, we’ve found. Part of the research we have done in determining how great that need is all compiled into a 19-page white paper, which is called Diabetes: More Than A Statistic and we have just submitted for publication in an industry journal this month. Our paper focuses on how diabetes psychology and digital platforms can be used as focal points to make positive changes in the lives of people with diabetes. This paper makes the argument that when we treat people living with diabetes as more than a number and consider the patient experience with empathy, it transforms people into more than statistics and lab results; it allows for their voices to be heard. This personalization has the ability to move beyond the old talking points of diabetes into a new sphere of individualized strategies that can help people overcome obstacles to lead healthier and happier lives.
Of course, this is something the Diabetes Online Community (DOC) is all about, and it was recently brought up at the ADA Scientific Sessions where advocates like Manny Hernandez and Jeff Hitchcock encouraged healthcare providers to use online interaction to tie in with the bigger emotional and medical aspects of patient diabetes care.
It’s my hope the this new “platform” will serve to galvanize the impact of the DOC and diabetes non-profits. I believe it is both necessary and important to convince Industry/healthcare to actively participate and support these efforts as a way (for them) to build genuine and lasting relationships with people with diabetes from diagnosis and onward.
Our mission is worth repeating:
We want people to understand the facts about diabetes and have empathy for what makes diabetes hard. Diabetes is a chronic illness that never goes away. It requires constant effort. There is no finish line to cross. Most people with diabetes feel that their efforts to manage diabetes are never good enough. And, because most others (without diabetes) have no idea what a big effort it is, there aren’t enough of us cheering for those who live with diabetes.
Let’s change this! I invite you to have a voice in what direction this movement will go.
Thanks for this awesome new initiative, Susan! We look forward to working together as a community on this psychosocial front to build on what you started at BDI.