There’s stigma everywhere when it comes to diabetes, and we as a community are constantly on notice to correct misconceptions, stereotypes, and misinformation. Yes, we can eat carbs if we choose to, even if it’s not the best choice. No, your aunt’s special foot massage with essential oils won’t cure us. Sure, we love hearing about your dog who has diabetes. There are even statements from our national diabetes organizations about how language can feed stigma, and how we can stop it. But in the general course of our days, we may encounter people who feed that shame and blame cycle. And diabetes is hard enough without judgement and criticism.
Which is why we took to our Facebook page, asking our readers, “Do you ever feel ashamed about having diabetes?” We wanted to know if A Sweet Life readers were encountering stigma and misconceptions, and how they were handling it.
Responses, like our readership, were diverse.
“Not ashamed, but guilty, every single day, for the financial burdens T1 has placed on my family and me.”
“Hell no! How can you be ashamed of an autoimmune disease? I didn’t cause it. I have it and I work hard to manage it daily.”
“Not a bit! Not ashamed, not guilty, didn’t ask for it anymore than anyone asks for a disease. Been type 2 almost 33 years, not overweight, eat healthy and love riding my bike. I have diabetes, it doesn’t define who I am!”
“NO. Never ever ever! I’m type 1 and having this disease is not my fault! I feel like same about type 2 sometimes it’s genetic and just happens!!!”
“Sometimes other people try to make me feel ashamed, I think. At least, that is how I perceive it … when they half-smile, tilt their head/shake their head/nod their head … and bring up, ‘Maybe [you] shouldn’t have enjoyed so many snacks, pastries, desserts, wine, etc.’ Um, no. Please don’t make me feel guilty or ashamed. I already feel enough burden just by LIVING with this diagnosis every second of every minute of every hour of every day-for the rest of my life. I really try to educate and inform as many people as I can about T1D. Nobody REALLY KNOWS about it, unless they have it, it seems. And typically folks are happy to learn something new.”
“No! Why would I? It chose me not the other way around!”
“I did when I was very young and had a bad experience in public. Now I cant imagine my life without my diabetes. I dare say, I sometimes use it as an excuse to get out of things, so it would be hypocritical to be ashamed of it.”
“No. Ashamed isn’t the word I would use. Tired would be the word I would use because every day is different.”
“No, but sometimes other people think I should feel ashamed. There’s a lot of opportunity to educate others in that moment.”
Shame and guilt seem to be by-products of a diabetes diagnosis, becoming extra emotional burdens carried by people with diabetes. But as a community, we can build each other up and work to change the diabetes narrative. Feeling down about stigma? Find your community and rise up. We’re all in this together.
To revisit an excellent article by psychologist and fellow PWD Michelle Sorensen, “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.”