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How is Inclusive Diabetes Care Different?
The current POV feels adversarial and this is hurting everyone's physical and mental health. Inclusive Diabetes Care believes and has some compelling research that points to inclusion as the solution.
Diabetes is a challenging condition. So let's start this article with a shout-out to everyone in this space. Organizations like ADA, ADCES, Diabetes Sisters, Beyond Diabetes, Diabulimia Help Line, Diabetes Foundation, Diabetes Link, and JDRF are working very hard to help treat, prevent, and cure diabetes.
Yet, everyone in diabetes care faces an invisible obstacle. No, it isn't because someone with diabetes doesn't care about the blood sugar. There are many reasons why people with diabetes take breaks, minimize or become burned out by this condition.
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When someone seems to be managing their diabetes 'differently' than you believe they should, it is tempting to say something. I mean, that isn't okay. Yet such thoughts and beliefs point to the greatest barrier to care. Diabetes Stigma. At the IDC, we focus on diabetes stigma and how many other forms of stigma are interconnected and tangled up with diabetes.
What Is Diabetes Stigma?
The CDC defines it as "Diabetes stigma is defined as negative attitudes, judgment, discrimination, or prejudice against someone because of their diabetes. It comes from the false idea that people with diabetes made unhealthy food and lifestyle choices, which resulted in their diagnosis.”
Stigma offloads painful and challenging life events by blaming the individual experiencing them. When we think that diabetes is because of someone’s diet, weight, or life choices, we see it as their fault. This shifts the cause of diabetes away from the many complex factors surrounding the disease to blaming the individual. This instinctual thought process happens so fast that we don’t even see it. And each time it happens, it reinforces the false belief that this thing called 'diabetes' doesn't touch us and won't happen to us. It is how diabetes can ‘other’ a person.
The problems with stigma don’t stop there. Stigma also creates apathy. Apathy allows us to dehumanize and devalue groups of people, which energizes the cycles and leads to more ‘othering.’ Additionally, diabetes stigma intersects with other stigmas, including weight, race, economic, mental health, and physical and cognitive ability.
Othering is a phenomenon in which some individuals or groups are defined and labeled as not fitting in within the norms of a social group. It is an effect that influences how people perceive and treat those who are viewed as being part of the in-group versus those who are seen as being part of the out-group.
Recommendations For Diabetes Care
When we look at diabetes care, we often talk about changes in diet, exercise, and weight. Inclusion helps us reevaluate our suggestions. For example, while it might not seem extreme, asking people to lose more than 5% of their body weight isn't sustainable for most people with diabetes. Suggest eating a total of five fruits and vegetables a day seems possible until you learn that the average American eats two fruits and vegetables a week.
Inclusive Diabetes Care asks us to change our POV regarding diabetes care. Instead of asking clients to change, we get curious about finding balance. When I ask clients this simple question, “What helps you get into balance?” I learn about their life stress, many unspoken issues they are facing, and all of the amazing things they are doing! As they confide in me, the more I can support them. The more we talk, the more they can see how they manage this condition. This helps them feel connected to their effort, success, and forgotten ability to manage health.
Not The Typical Approach
I love a good fight, but the current beating, defeating, and reversing diabetes creates an adverse stance. In college, I remember learning there are three basic plots:
Person against person,
Person against nature,
Person against himself.
Present-day-me asks if it isn't true. The answer is a resounding NO!!!!! There are hundreds of stories, starting with how to come alongside diabetes, not fighting against it or ourselves!
Pause for a minute and ask yourself, how am I connected to diabetes? Using myself as an example, I can see how I am connected to diabetes.
I am touched by diabetes because of my work.
I am touched by diabetes touches my family.
I am touched by this because I am at risk of having diabetes.
I am touched by diabetes because illness is an unavoidable condition of being human.
While I am not as skillful as Heather McGee at explaining the zero-sum game, the more we ‘other’ people with diabetes, the more we participate in our oppression. The IDC is a company that wants to come together and collectively shift our point of view to one of inclusion. Connection is why we belong; it is that sense of belonging that increases our ability to overcome the stigma and shame associated with every aspect of diabetes.
The Basic Needs of Inclusion Pyramid
The Basic Need for Inclusion is a visual way to understand the concept of inclusion. There are five levels starting with Belonging.
As a dietitian, I see that people bond over what they do or don't eat. Many clients will share detailed stories about navigating foods they like, don't like, or are currently trying to consume. I can't think of anything in our society that matches our fixation with food. It means food is a way we belong. It is true now, and it was true 200 years ago. It is because food is more than nutrients; it is culture and art. It is a celebration; it is how we mourn. It is creative, and it is expressive because food is our heritage.
When food is reduced to just a single macronutrient or simplified into an eat this, not that, our sense of belonging erodes. The quote that comes to mind is one by Margaret Mead, "It is easier to change a man's religion than to change his diet."
In short, foods connect us or divide us. At the IDC, we are very interested in how our current approach to diabetes care uses food to separate us from each other. The IDC wants to show how division is worsening not just diabetes care but all aspects of our health.
Where is the research?
A unique study examines empathy (an aspect of belonging) and mortality in patients with type 2 diabetes. "In this 10-year follow-up of patients with newly diagnosed type 2 diabetes, those reporting better experiences of empathy in the first 12 months after diagnosis had a significantly lower risk (40% to 50%) of all-cause mortality over the subsequent ten years compared with those who experienced low practitioner empathy1.
Our current approach to diabetes care, treatment, and prevention lacks this sense of empathy and belonging. Seeing how we are connected by diabetes, not divided by it, is the first step to belonging.
Association Between Primary Care Practitioner Empathy and Risk of Cardiovascular Events and All-Cause Mortality Among Patients With Type 2 Diabetes: A Population-Based Prospective Cohort Study Hajira Dambha-Miller, Adina L. Feldman, Ann Louise Kinmonth, Simon J. Griffin. The Annals of Family Medicine Jul 2019, 17 (4) 311-318; DOI: 10.1370/afm.2421