“Don’t all diabetics have bad breath?” The question hit me like a giant wave, knocking me off my feet and then washing over me. I was stunned and unable to respond.
I had invited a new neighbor over for a playdate. She had a toddler the same age as my second daughter. New to the neighborhood, she was looking to make friends. Somehow my diabetes had come up in conversation. Maybe she asked about my pump, maybe I had to boost my blood sugar, I can’t even remember how she found out about my largely invisible illness. But I will never forget that question and the way it made me feel.
I provide cognitive behavioral therapy to people with diabetes in my psychology practice, and have heard similar shame stories from my patients. I remember a young woman who described her difficulty managing her blood sugars at work. This stemmed from her reluctance to test in front of others. She was avoiding exposing her diabetes to coworkers. Of course, this made it difficult to manage her blood sugar during busy hours at work.
When we peeled back the layers of her thought process, my patient came upon the memory of a classmate from her childhood exclaiming, “Ew, you have diabetes?” To this day, despite the kindness of many others who have learned of her diabetes, that is the reaction that continued to influence her behavior. We had to work hard to balance her thoughts and beliefs about sharing her diabetes with others so that she could reduce that persistent sense of shame.
I know shame had been at play in my life well before this playdate. It was shame that made me reluctant to test my blood sugar in public in my early days, or to inject my insulin at the dinner table with friends or on a date. Later, when I had started using the insulin pump, shame continued to influence my behavior. Shame was the reason I always concealed my insulin pump under a long sweater or shirt and clipped it firmly to a waistband. If a twirl of tubing delivering my life saving insulin should peek out from under my clothes, I quickly tucked it away as if some inner part of me was exposed.
On some level, I believed something was wrong with me, and that something bigger than my insulin pump needed to be concealed. When I speak to health care professionals about psychological care for people with diabetes, I often point out that guilt is different than shame. Guilt means we think we have done something wrong. We can deal with that, we can remedy our behavior. But shame means we think something is wrong with us, that we are broken or unworthy. That belief is much harder to address.
In the early years of living with diabetes, I was still a young woman in my twenties, and appearances and the impressions of others were important to me. I didn’t want my medical equipment to show any more than I wanted my emotions and my grief revealed. I was a people pleaser and I suppose I knew the unspoken rules of how to win people over when you are dealing with a chronic disease. I recently read a beautiful essay by a mom of a boy with Type 1 and she wisely noted that outsiders are most admiring when you look like you have everything under control.
I turned 40 this year and have reached a different place in my life. Over the last ten years I have gradually left behind the underlying sense that something is wrong with me, that I have to hide part of who I am. I now consider myself an advocate for my patients and others who live with diabetes. I am quiet about my own diabetes most of the time, but I am not hiding it anymore. I certainly no longer feel ashamed, like something is wrong with me.
Sometimes, however, there is something wrong with the perspective of people without diabetes or another chronic illness. They cannot accept vulnerability, and they maybe even seize upon it to make themselves feel bigger. That is wrong. I imagine there are many other reasons for shaming someone. Sometimes it is ignorance, or a desire to minimize the other person’s struggle to feel better.
I did not have a good response for my neighbor that day. I doubt she knew she had provoked such strong emotion in me but I can’t imagine she thought it was a nice thing to say. I wish I had not let it go, but I was speechless. I was later able to talk about the comment with my family, and their indignation confirmed my feelings about it. I like to think that if someone made a comment like that again about diabetes, I would assert myself and simply communicate directly about how it makes me feel.
Recently, I learned a lot about shame by reading about Brene Brown’s research in “The Gifts of Imperfection”. She firmly instructs her readers to turn towards someone they trust as soon as they feel shame and open up about it (sometimes against all your instincts!) It is good advice. I was speaking to a room of 200 health care professionals about shame and empathy last spring, and told my “bad breath” story. I experienced the collective empathy of many wonderful health care professionals from all across Canada. It was only because I was brave enough to be vulnerable.
We can’t manage diabetes well when it is buried beneath layers of shame. So we must externalize it, speak about it. That is the way to combat shame: to say it loud and accept support from others.