Tonight! Sept. 20 #DCDE Twitter Chat Topic: Diabetes Blame and Shame
I will be there! Join me with friends and community members Chris Clement and Jewels Doscikz from Diabetic Connect for this really great opportunity to share your voice and thoughts on diabetes stigma, blame and shame.
Jelly beans of blame
September 16, 2016
Cynthia Rogers
“Carter! Put those jelly beans down! Do you want to get diabetes?” Boom! Crash! That bitty bag of jelly beans just knocked me over. I was 19 and still fairly new to my type 1 diabetes diagnosis, and on that day, in that pharmacy line, those words took me down. Is this where stigma, blame, and shame begin? In that moment, a tiny bag of jelly beans hit me more fiercely than a ton of bricks. How appropriate that I happened to be waiting patiently in the pharmacy line for my diabetes medication.
It was the first time I had ever reasoned with myself that maybe I had caused this to happen. Too much freshman fun? Too many Bagel Stop bagels with the large FrappaMochaChinoLatteSprinkle coffee. Was it the brownies, too much television, or not enough sleeping? Was it because I had not called my parents and forgotten to send my grams a letter? I had not previously questioned my diabetes. But what I did “know” was that another human had just told me I was the instigator, culprit, and mastermind behind my own diabetes. I blamed me.
Mackerel of shame
Recently my mother-in-law returned home from her physician’s office carrying much more than she left with, type 2 diabetes. She is intelligent, beautiful, and sweetly midwest reserved.
“I had fish and vegetables from the garden. My number is so high. What do I do?” She was embarrassed and frustrated thinking she was the cause. She had taken her medication, walked, hydrated, and prepared a healthy dinner. She had done every piece “right.” But, she must have caused this. She blamed herself.
Thwap again! Only this time I was hit by a mackerel instead of jelly beans. My diabetes brain lept to suggest, the tools I understood….bolus, inject…. But those were not the tools for her diabetes. In that moment, that mackeral had me realizing with more fish stink clarity than ever, no person touched by diabetes has it better or worse, for rich or for poor. We all live with diabetes in our hearts, our minds, and our sickness and health. Nothing will touch us more personally or intimately, be it in the quiet of our kitchen, or in the dizzying pharmacy line, than diabetes. We all carry guilt. We all carry shame. We all carry blame. We all need to carry each other.
Chocolate bombs of support
So how do we get here? To a place where diabetes “names” and “types” are used as a tool for collective empowerment instead of divide? We’re like snowflakes, no two are alike. My diabetes will always be unique to yours regardless of name or type, and let’s be really real here while we’re at it, my diabetes from 10 minutes ago will be oh so unique to 10 minutes from now! Our therapy choices and options might vary, but our emotions, feelings of blame, shame, and grief, and the desire for information and peer support are parallel. Each of us goes to bed at night and wakes up each day with our diabetes.
A few weeks back, I had dinner with a table filled with D friends. We were not ranked or seated according to D name or type. We sat as friends who happen to live with diabetes and who were also hungry! The conversations were fueled with ideas, laughs, and support but were also all fueled by dessert that evening, chocolate bombs. Each one of us raised our forks, managed our diabetes in our way, dug into that cake, and carried on with the kind of fuel lit conversations that are possible only with the support of D friends and community (and maybe a chocolate bomb).
Cynthia Rogers is the Community and Social Media Manager for tuDiabetes.org, serves on the leadership team for Camp Hodia, serves on the board for her local JDRF chapter, is a lover of cooking, traveling, and outdoor activity, and lives with type 1 diabetes.