Corinna Cornejo (@spinningdplates) is a Latina living with Type 2 diabetes. Diagnosed in 2009, she’s become an active patient advocate and member of the #DOC (diabetes online community). Corinna is part of the Intercultural Diabetes Online Community Research Council (@iDOCr) leadership team.
Every one of us living with type 2 diabetes has a version of this story:
You’re in a doctor’s office, or at a clinic, or with a nurse. Hopefully, not on the phone. And you’re being told that your life is changed forever. Something in your body isn’t working correctly. You have to make major lifestyle changes. Starting now. Things might get better, but they might get worse. And there’s no cure. This is about the point when your ears stop working. White noise. Deep breaths. A feeling of dread. You’ve been diagnosed with type 2 diabetes.
There is no cure. But there are treatments. Some of them medical. Some of them behavioral. Attitude is oh so important.
It’s not clear what the cause is. But there are associations. Associations with things like obesity. And age. And race/ethnicity. And genetics. And being sedentary. Some of these things a person is supposed to be able to manage. Some of these things, not so much.
The stigma surrounding type 2 diabetes
Because type 2 diabetes is seen as preventable, we are blamed for making poor health choices. If only you exercised more. If only you avoided junk food. If only …
Because type 2 diabetes is associated with obesity, and obesity is associated with the so-called deadly sins of gluttony and sloth, we are shamed. If only you didn’t eat so much. If only you ate more vegetables and fewer sweets. If only …
And because type 2 diabetes is stigmatized, we are bombarded with a litany of “free” advice: Lose weight. Exercise. Eat this. Don’t eat that. Don’t eat sugar, it’s what caused your diabetes in the first place. While it may be well-intentioned, these constant reminders of all the things we shouldn’t do or don’t do well enough takes its toll.
Blame and shame undermine effective self-care
Rather than providing tough love that enforces healthy habits, the blame and shame of diabetes stigma gets in the way. It undermines the confidence and commitment we need for effective self-care.
Blame and shame drive people to hide
Monitoring blood glucose is a cornerstone of diabetes self-care. We are instructed to check when we wake up, before and after meals, before and after exercise, before going to bed, and anytime we feel “weird.”
You know what feels “weird?” Pulling out a glucose meter in a restaurant, or at the gym, or at school, or at work. Even with 29 million other people living with diabetes in the United States, checking our blood in public is not commonplace or familiar. Inevitably, someone will make a comment or give a disapproving look. And once that drop of blood appears at the fingertip, all bets are off. The comments begin. “Eww.” “How can do you do that?” “Do you have to do that here?”
Sure, we can excuse ourselves and check in the bathroom. But, should we have to? Even when we’re feeling weak or shaky from an out-of-whack blood glucose level? Should we have to?
So there are times when we make the decision to “fit in” instead of taking care of ourselves. We skip the test and fly blind.
And there are times when we avoid social situations where diabetes might come up. We don’t go join our friends or family on a bike ride or a hike or at the movies where popcorn is served by the tub.
We hide. We either hide our diabetes or we hide ourselves.
Blame and shame drive people to give up
There are no guarantees. We’re playing the odds that we’ll avoid complications and an early death. But no one knows for sure why one person will and another won’t. We just know that the odds for a longer, healthier life are improved with well-managed blood glucose levels.
We sit in a doctor’s office and get questioned about our failings when the labs indicate that our blood sugar is “out of control.” Did we “test” regularly? Are we “complying” with our prescribed treatment?
Couldn’t that high A1c be caused by changes in my body? Diabetes is a degenerative disease, after all. Or maybe, just maybe, my prescribed treatment is no longer effective and it’s time for a change.
Dealing with blame and shame is exhausting. Constantly, we’re left with the feeling that we are being judged and have to defend every lifestyle and health choice. This isn’t just exhausting, it’s also demeaning.
For some, the burden of stigma is simply too much, so they give up. They ask themselves, “Why even try? I’m damned if I do and damned if I don’t.”
The true cost of stigma is lives lost
Stigma undercuts our ability to consistently take care of ourselves. At best, stigma adds to the daily stress of managing life with diabetes. At its worst, stigma kills hope and drives some of us to give up on actively managing our health. Ultimately, giving up on life.
When a person with type 2 diabetes dies early due to organ failure, heart attack, or stroke, it’s a life literally lost. More often the loss is more subtle: giving in to social isolation, depression, and a compromised quality of life.
What to do
Interrupting the cycle of blame, shame, and self-doubt will be difficult. It will take time. Diabetes stigma is ingrained in our culture and behaviors. Yet each one of us can do our part.
It begins with the belief that, at our core, we are all good people and want to do what’s best for ourselves and others. No one, especially those who directly suffer the consequences, is deliberately “non-compliant.”
Changing the language we use is key to battling diabetes stigma. When we talk about “people with diabetes” instead of labeling them “diabetic,” we put the focus on the person and not the disease. When we say we are “living” with diabetes instead of “suffering” from it, we instill hope. And when we talk about “managing” instead of “controlling” blood glucose, we focus on the possible.
It doesn’t matter that it’s hard to do. We must interrupt the behaviors that stigmatize people living with diabetes and replace them with language that offers hope and empowerment. Our very lives depend on it.
What has helped you to deal with diabetes stigma? Share your thoughts by commenting below.