Asking the Choir to Preach: Stand Up Against Diabetes Stigma
May 22, 2019, 15:27 PM
I usually am preaching to the choir, but this time, I’m going to ask the choir to preach – loudly and often. There is a serious psychosocial problem occurring and it’s not something we can let slide. For too long there has been a stereotypical misconception about a person with diabetes (type 2 in particular, but the word is used ubiquitously). People with diabetes often hear that they are in fact at fault for the disease; through poor diet choices, sedentary lifestyle, etc. There is a sense in society that people have “caused” their diabetes. As someone with type 1 diabetes, people have assumed I now have type 2 now that I’m an adult. Since that is not how autoimmune diseases work, and we can’t send the general public back to school, and we know there are different types of diabetes – it’s time to stand up for the entire diabetes population and disband the ignorance.
Diabetes seems to be the butt of many jokes, but frankly, it isn’t funny. The shame and blame game leads patients to feel that they are at fault and so getting help — proper education, support and medications — is part of the shame that hangs over them. We know that if you feel shame, then you feel less socially supported, more powerless and isolated. Diabetes educators need the opposite for people with diabetes; for them to feel empowered to access the education, support and therapies they need. So, let’s do what we do best and shed some light on the subject.
I’ve met clients who did not seek care for years because they were told it was their own fault and they were ashamed. Think for a minute about the impact that has on a society, when an entire disease state is labeled in ignorance as a shameful thing.
Many years ago, I had a patient who hung his head and said to me, “I’m sorry, I messed up. Am I going to have to take insulin now?” I remember asking him, how he got the idea that therapy for a disease was shameful? He explained that insulin had been used as a threat of sorts for years. I know this happens, but every time I hear it, I rephrase it in the only way that makes sense to me. If your house is on fire, I’m not going to stand there and shame you about how it might have happened. I’m going to call the fire department and get some water on it. This is how we need to approach diabetes therapy. It’s not different — put out the fire and stop yelling at the poor person who needs help. What would be the point of refusing water for a fire? It seems that is what we are doing socially. We tell these people to just burn, burn to the ground by developing the complications that will take quality of life away because you
deserve it. Sounds worse when you write it down, but I’ve met clients who did not seek care for
years because they were told it was their own fault and they were ashamed. Think for a minute about the impact that has on a society, when an entire disease state is labeled in ignorance as a shameful thing. Now, I know this choir of diabetes educators doesn’t sing this song to their patients, but you probably have met people who think and speak this way. It is time to speak up against them, and you need to say it so everyone hears you.
We don’t make big changes by whispering the truth here. Recently, I had the opportunity at my son’s t-ball practice to re-educate someone about type 2 diabetes. I overheard one parent say to another, “My mom’s diabetes is so bad, she takes insulin and she doesn’t listen to the doctor and it’s so infuriating because it’s all her fault.” Whoa – full stop. I counted to 10 in my head (as responsible people do when they are angry), took a very deep breath and said, “You know, your mom may have diabetes for a lot of different reasons, but none of them are her fault. Would you talk to a cancer patient that way?” The parents were puzzled and looked at me sideways. “You wouldn’t say to a cancer patient, ‘gee you totally screwed this up and now you have cancer so that means we’re going to have to resort to chemotherapy.’ Would you?” They agreed that would be a foolish thing to say. I then went on to explain how type 2 diabetes can occur and the multitude of ways that even prevention and healthy eating may not be able to keep a person off insulin. Since insulin is an essential hormone, it shouldn’t be used as a threat. You don’t threaten patients with therapy. It makes them think that taking the therapy is bad, shameful and that they shouldn’t need it. They will react to shame by doing everything in their power to avoid the therapy and will resist dose titrations and fingersticks, because it’s all evidence of them not performing in a way viewed as acceptable. That’s bananas, especially in the context of another disease, but for some reason this ignorance about diabetes perpetuates.
A therapy that will help people with diabetes feel better, avoid complications and perhaps experience better quality of life should not be seen as a threat.
I left the t-ball practice feeling like maybe I had saved the parent’s mother with diabetes some grief she was getting from her child, or maybe I just gave my children a preview of what it means when mom takes you to practice. It definitely helped me change the conversation with more force. I don’t know how much talking it will take to help the general public understand that people are not to blame for their diabetes and that threatening therapy or even characterizing a disease as “bad” is not productive. A therapy that will help people with diabetes feel better, avoid complications and perhaps experience better quality of life should not be seen as a threat. Don’t let people’s houses burn to the ground, give them a hug and call the fire department!
About the Author:
Molly McElwee-Malloy is the Clinical Services Manager for Tandem Diabetes Care. She previously worked for TypeZero Technologies and UVA's Center for Diabetes Technology. Molly is the chair of the technology workgroup for AADE. She's active in the diabetes online peer support community: @MollyMacT1D.
Disclaimer: The views and opinions expressed in this blog are those of the author and do not necessarily reflect the views of Tandem.