There has not been a ton of research regarding how diabetes stigma affects healthcare outcomes. One of the most notable articles was published in The Patient – Patient-Centered Outcomes Research in 2013. Social Stigma in Diabetes was written by Schabert, Browne, Mosley, and Speight as a call to action for more research on the topic1. They provide a framework for addressing diabetes stigma as of 2013, most of which is still relevant today.
As I mentioned in Barriers to Care: Stigma yesterday, Australia is handling diabetes stigma quite well. Notably, Australia is where 3 of the 4 authors of this piece are based. It’s no coincidence.
Looking at the diagram above, I think it would be a good idea for the United States to begin its stopping stigma at the source: healthcare providers. It is important to understand that healthcare providers begin their journey in medical school with the mission of helping people live. While that is great, the approach they are often given seems to be to employ scare tactics as a way to motivate people to take better care of themselves. As we know, scare tactics don’t work. In fact, they are counterproductive. I am not implying that every medical school teaches that way, but it’s obvious that many of the seasoned professionals, especially primary care providers, were taught to use this approach.
Since the United States does not currently have a national healthcare program, it is difficult to address suggestions on a national level without the help of a national organization like the American Diabetes Association and its Standards of Care. Standards of Care 2021 address the facilitation of behavior change and well being2. An excerpt from the recommendations section of the article:
“…in response to the growing literature that associates potentially judgmental words with increased feelings of shame and guilt, providers are encouraged to consider the impact that language has on building therapeutic relationships and to choose positive, strength-based words and phrases that put people first.”5. Facilitating Behavior Change and Well-being to Improve Health Outcomes: Standards of Medical Care in Diabetes—2021
Encouraging providers to use better language is great, but this ADA guidance provides no resource regarding how to change language that has been used for decades by many of our diabetes providers.
So, what can we do as people living with the consequences of diabetes stigma?
Correct your provider. If your healthcare provider is using language that bothers you, tell them it bothers you. “I understand this is the language you are used to, but it bothers me. Could you please try referring to [diabetes topic] this way instead?” You may get an understanding response. You may not. This simple interaction could be a good indicator of whether this is the best provider for you – part of a doctor’s responsibility is to hear you and help you meet your needs. Neglecting your anxieties is not helping you meet your medical needs.
Correct the public. Whether it’s your Aunt Sally telling you horror stories about her friend who passed away after having complications, people telling you their MLM product will cure your diabetes, or a friend who is concerned about what you are consuming, share the truth with them. Is there an article in the paper or a magazine that is off-track? Send in a letter to the editor. I completely understand that it is exhausting. If exhaustion is a factor, it’s okay to triage those misconceptions and address the ones that are easiest for you.
Educate someone who facilitates your health insurance. I was able to speak with the Director of Health Outcomes in the company I work for, that provides access to my health insurance (I pay a hefty premium – I want them to hear me). I was having trouble getting treatments approved because of the “cookie cutter” approach they take to diabetes. I explained how this is not conducive to productive healthcare outcomes because people with diabetes are all biologically different and require different treatments to produce similar outcomes. She understood, and was able to get me everything I asked for (except for blood ketone strips, which is just a frivolous denial on their part – blood ketone meters can help prevent hospitalization costs for them since they provide a more timely indicator3).
Seek therapy. Cognitive behavioral therapy and dialectical behavioral therapy have been paramount in improving my patience with healthcare providers. There are many types of therapy, and many different kinds of therapy licensure. Look into it. See if there is a capable diabetes mental health provider near you on the ADA website.
Seek Peer Support. Can’t afford therapy? Start a conversation in the DOC on any platform (literally any platform – Facebook, TikTok, Twitter, Insta – we are EVERYWHERE). People are always willing and able to listen. It’s not the same as professional, licensed therapy, but sometimes peer support just has to do.
Please remember, it is not your responsibility to correct anyone. This is simply a plea to reduce perpetuation of diabetes stigma, feelings of shame, and enabling the use of fear tactics. Stigma can end, but it won’t end unless we address it.
Do you agree with my take? Disagree? Have different ideas? Or have initiated your own approach to stigma? Please share your feelings and ideas in the comments, on Twitter, or at firstname.lastname@example.org. I want to know more about you and how you interpret and adjust to stigma. We are in this together!
- Schabert, J., Browne, J.L., Mosely, K. et al. Social Stigma in Diabetes. Patient 6, 1–10 (2013). https://doi.org/10.1007/s40271-012-0001-0