Stress, Distress and Diabetes Stigma
Tracking how diabetes stigma leads to diabetes distress and burn out isn't rocket science but knowing how to spot it and what to do is out of this world!
Diabetes stigma? Diabetes distress? Burnout? Don’t worry if these terms sound unfamiliar; when you have diabetes, there is a good chance you will know how they feel. Keep reading to see if you can spot the difference!
What is Diabetes Stigma?
Diabetes Stigma refers to the experience of negative feelings such as exclusion, blame, rejection, or judgment due to having a chronic disease. For many people, the line between having diabetes and being diabetic gets blurred. This fuzzy zone is where diabetes stigma likes to hide.
Diabetes Stigma may present in the following ways:
Wanting to cry
Wanting to blame (diabetes, family, food, yourself)
Being frustrated
Thinking it is “All my fault.”
Wanting to “not talk about it.” AKA, Ignoring, minimizing, or pretending diabetes will go away.
What to do when diabetes or any stigma is present?
Acknowledge the stigma. Say out loud, “There is a lot of stigma surrounding diabetes/my blood sugars.” If you are thinking, “But…” and then a list of reasons why this is not true comes flooding out of your mouth, pause and see that this IS diabetes stigma. It can range from being told, “You don’t need to take medication because you are on the borderline,” to minimizing the effort that this condition requires. The “Just change your diet/exercise/stress/job/income/weight…” comment that is on the tip of everyone’s tongue is what diabetes stigma sounds like.
Remember that stigma and judgment are wrong, and it isn't okay to be judged because you have diabetes. Looking for more support, check out the Diabetes Etiquette card!
It sure is tempting to blame yourself for diabetes because many people think diabetes is caused by eating certain foods or your weight. Keep up your effort to resist this urge.
If you didn’t get the memo, it is normal to have mixed feelings about diabetes.
When my clients ask, “What helps?” My go-to response is offering ourselves "Space and grace.” Space (time) and grace (permission) to try many options until you find what works for you. So often, the expectation is to change everything simultaneously, which we both know doesn’t work, and if it does, it doesn’t work for long. Pssst, this is how diet culture makes money.
Why is Diabetes Distress a problem?
Diabetes is overwhelming, and feeling overwhelmed leads to Diabetes Distress. Unfortunately, Diabetes Distress is often confused with depression. Getting clear about how diabetes distress is different is helpful. Here are some things to consider
Struggling. If you feel stuck because you have diabetes, this is likely diabetes distress. Diabetes distress can lead to depression or make existing depression worse.
Maybe you feel that having diabetes (or having your A1C changes) is due to personal failure. This is likely diabetes shame and, if left untreated, could be diabetes distress. Regardless, this is a classic example of shame causing a knee-jerk reaction that often results in self-blame, which makes diabetes distress and depression worse.
When your frustration is redirected towards self-blame (something that is called internalized stigma), there is a good chance that diabetes distress is a factor.
Diabetes Distress is a real condition that is different from depression. Learn more about diabetes distress, or use the diabetes distress scale so you can talk to your provider.
Diabetes Burnout is different than diabetes stigma and distress. When I ask clients more about burnout, they respond, “I don't know what you want me to say." It is hard to talk about something when you don’t see any options. This is where having space and grace is helpful. Simply acknowledging that burnout is present by letting trusted friends know can sound like, “I am burned out from having diabetes.” Below in the italics is the unspoken wish that is often missing when dealing with diabetes burnout.
"This is hard, and I want to feel better."
"This is exhausting, and I want not to be so tired."
“I want diabetes to be easier to manage.”
“Believe me.”
“I am looking for support to make changes to my overall diabetes plan.”
How are Diabetes Stigma, Distress, and Burnout different?
Diabetes Stigma: The CDC defines Diabetes Stigma as "negative attitudes, judgment, discrimination, or prejudice against someone because of their diabetes.”
Diabetes Distress: The American Diabetes Association defines Diabetes Distress as "The emotional distress that results from living with diabetes and the burden of relentless daily self-management."
Diabetes Burnout: Beyond Type 1 defines Diabetes Burnout as "a state in which someone with diabetes grows tired of managing their condition, and then simply ignores it for a period of time, or worse, forever.”
It is helpful to hold that these three conditions are interrelated and can contribute to depression or make any existing depression worse.
Helpful Resource
As mentioned, Diabetes Behavioral Institute offers a Diabetes Etiquette handout to help people without diabetes better understand what is helpful.
Diabetes Distress