More on Diabetes Stigma

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.

Schabert et al. 2013

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 sonjac@nevada.unr.edu. I want to know more about you and how you interpret and adjust to stigma. We are in this together!

Sources:

  1. 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
  2. https://care.diabetesjournals.org/content/44/Supplement_1/S53
  3. https://dtc.ucsf.edu/types-of-diabetes/type2/treatment-of-type-2-diabetes/monitoring-diabetes/checking-for-ketones/

Barriers To Care: Stigma

Image from: https://www.mhpcolorado.org/fighting-the-mental-health-stigma/

Diabetes stigma is real. People who do not have diabetes may not understand that it is commonly stigmatized, but people with diabetes are reminded of it every time we hear a diabetes joke about your chocolate cake, losing limbs, or being asked, “Should you be eating that?”

Spoiler: Yes. The answer is always, “Yes I should be eating this, and I may have more when I’m done with this,” (tone/ sarcasm). Fortunately, not everyone is as snarky as I can be when it comes to diabetes stigma.

While my attempt at humor helps me in coping with stigma, it doesn’t help to change anything. In fact, it’s counterproductive. In order to change the stigma surrounding diabetes, we have to be willing to take people seriously and educate them when they perpetuate stigma.

So what is the best way to accomplish a change in or elimination of stigma?

Education!

Diabetes Australia is way ahead of the game when it comes to ending diabetes stigma as a barrier to care. When I started this blog, I was blessed by the DOC presence of Renza via her blog Diabetogenic. Renza works with Diabetes Australia and has been actively involved with the Heads Up on Diabetes campaign.

Link: https://youtu.be/K-YCS-ZZsBE

This week, I attended a digital conference held by DiaTribe called d21 Lightning Talks: Stigma and the Stories We Tell. According to the website for the event, the idea for the talks stemmed from a TED talk by Chimamanda Ngozi Adichie called The Danger of a Single Story. It’s about 20 minutes, and I highly recommend it.

“The single story creates stereotypes. And the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.”

-Chimamanda Ngozi Adichie

Source: https://youtu.be/D9Ihs241zeg

The only way perceptions will change is if we are willing to tell our transparent stories, correct misconceptions, and educate about the reality of living with diabetes.

How do you deal with diabetes stigma? Let me know in the comments, on Twitter, or email me at sonjac@nevada.unr.edu.

  1. 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

Some days are better than others.

Today isn’t the best diabetes day.

For those of you who do not read loop: glucose of 364 mg/dL, 5.24 units of active insulin, 56 units of insulin delivered on the day, as of 3pm. I’m writing this at 19:45 and I’m exhausted. As you know, failed pump sites (or not receiving insulin) make for such a long, miserable day.

Disclaimer: This is my personal experience. This is not a guide of how you should deal with a similar situation. I am not a medical professional and this is not medical advice.

Since there is no fix-a-flat can of magic for this kind of predicament, we do what we can do make sure we are taking care of ourselves.

My blood sugar was fine when I got home from work at 6am. I ate a meal, and went to sleep. When I woke up, I noticed my Dexcom had been alarming high glucose for hours (side note, I have NEVER woken up to Dexcom alarms).

Here are the steps I took when I woke up:

  1. Checked my blood sugar on a glucometer. I don’t even usually carry one anymore since I have the Dexcom, but It’s still here and I still use it to back up strange readings. After confirming the HIGH reading from Dex was the same as my meter, I checked Ketones.
  2. I have a blood ketone meter – they are going to be far more accurate than urine strips, which can be up to 4 hours delayed with their readings. And thanks to the keto diet, they are super cheap to purchase online. I honestly grab those supplies on Ebay because my insurance company refuses to cover them. Anyway, blood Ketones read 1.8 mmol/L. That’s high enough that I could have made a trip to the ER for fluids, but I also have other options based on a plan my doctor and I came up with.
  3. After confirming the sad status of my body, I replaced my Pod. I filled it with insulin and put it in a different area than it had been before. The site of the old Pod is most certainly infected. I put some bacitracin on it and I’ll check it again tomorrow.
  4. INSULIN! I took more insulin. Based on my personal insulin needs, I had about 10 units of correction (1:50 insulin sensitivity factor correcting down to 100 mg/d). Additionally, I ate a 15g carb snack and took insulin for that as well. When ketones are involved, it’s better for me to have a little more insulin on board and babysit the Dexcom.
  5. Next, I downed about 40oz of electrolytes in an hour. I found powder sticks of electrolytes at Costco. They taste awful, but holy crap do they work! I just water them down a bit more than advised – for taste.
  6. Finally, I went back to bed. My body was MAD! So I turned on Game Show Network, snuggled my doggies, and set an alarm so I would remember to check my blood sugar every hour.

I woke up at 7pm at 75 mg/dL and dropping. Had a small spoonful of icing, and now getting ready for work. No, I don’t feel great. Yes, I could use my Intermittent FMLA. But I’m feeling far better and honestly want to go to work. It’s nice having people around, and I’m lucky enough that my supervisor is T1D and totally gets it. If I start to feel bad again, I’ll go home without it becoming an issue.

How do you deal with bad blood sugar days? Have you set up a plan of action with your doctor? Tell me about it in the comments, on twitter, or email me at sonjac@nevada.unr.edu.

Hurley, the helpful Rhodesian Boxer.

An Introduction

Dealing with diabetes sucks. Whether you have been diagnosed with Type 1, Type 2, Gestational, are a caretaker or a medical professional, you will understand how diabetes complicates everyday life. It’s no wonder that people with diabetes are at an increased risk for mental health comorbidities and increased stress.

What is the purpose of this blog?

If you visit my “About” page, you’ll find my mission statement:

The mission of Mind on Diabetes by Sonja Cunningham is to create an online space where people with diabetes can learn and acquire fellowship, without judgment, in order to appreciate the silver linings of living with diabetes.

            The presence of judgement in diabetes care is severely underestimated. Judgement from healthcare providers is unavoidable. Blood glucose (BG) readings, HbA1C, and other standards of measure look at what we have done wrong rather than what we are doing right. Using an alternative mindset, I like to look at these standards of measurement as a source of education rather than a performance evaluation.

As an example, I was in college when I first saw an adult care endocrinologist. Her question to me in my first appointment was, “Why is your blood sugar high right now?” My primary observation was that she assumed there was an answer. Not every BG reading is caused by something that is directly identifiable. My next concern was the fact that it is simply not logical to check blood glucose in an appointment setting as it adds no value to the goal of the appointment, which should be continuous diabetes care. Not surprisingly, after a few appointments and a conversation about patient outcome expectations in her practice, I decided she was not the doctor for me.

The judgment from this doctor stuck with me for quite some time. I struggled with finding another adult care endocrinologist because I would enter the appointment on full defense. I spent 10 years in this cycle – finally locating a doctor with diabetes who treats me as a human being rather than a, “health performance outcome.”

If you want to hear more about my story, if you want to work on re-framing the role of diabetes in your life, if you’re interested in current research regarding mental health and diabetes, you are in the right place. Please consider commenting, sharing, and subscribing.

I will be creating groups and pages on other social media platforms. Look for these additions in my upcoming blog posts in order to connect, chat, and share with me, my followers, and other PWD who understand that diabetes is a team sport and you do not have to do it alone.