Dealing with diabetes stigma, blame, & shame

Recognising Diabetes Week (12th-18th June 2023)

As a charity, our heritage is steeped in offering support and education for those living with and managing variants of diabetes. We’re recognising Diabetes Week 2023, by offering a range of additional blogs and e-bulletins around this important subject.

If you’re living with type 2 diabetes, you’re managing a challenging and chronic condition that can cause serious complications. You may also experience stigma.

Stigma is built on false beliefs, stemming from a lack of information. The people who believe the stigma surrounding a condition or an issue likely don’t have the facts they need to arrive at an informed conclusion. 

According to 2017 research, stigma around type 2 diabetes can cause people to feel excluded, rejected, or blamed for having the condition. Stigma can be internalised, as well. You may feel ashamed about your condition or blame yourself for having it in the first place or for not doing the “right” things to manage it. These feelings can impact your mental health. They can also make it challenging to take the steps needed to manage type 2 diabetes.

Why do people feel a stigma with type 2 diabetes?

People with type 2 diabetes may face stigma from a number of sources, including the media, healthcare professionals, and friends and family members. According to a 2017 study of 1,572 people with type 1 diabetes and 3,850 people with type 2 diabetes, the most common cause of stigma is the belief that diabetes is a character flaw or personal failure.

There’s a misconception that people with type 2 diabetes brought it upon themselves by being lazy, having obesity, or eating an “unhealthy” diet. The study also found that stigma is highest among those who have difficulty managing diabetes. People with a high body mass index or HbA1c or who reported they were unable to control their blood sugar levels were the most likely to face stigma.

This stigma may lead you to blame yourself if you’re not meeting your blood sugar goals or if you need to start or change medication to help manage type 2 diabetes. You may feel as if you’ve failed. It’s true that diet changes and exercise can help you manage type 2 diabetes. But this is a driving force behind type 2 diabetes stigma: the blame and shame mentality that assumes you haven’t eaten “right” or exercised enough.

Some factors that impact diabetes management, such as age or genetics, are out of your control. And type 2 diabetes is a progressive condition, which means the steps you take to manage diabetes may not always work. You may need to adjust your treatment or management plan over time. Sometimes diabetes simply is resistant to treatment. You can do everything according to your doctor’s instructions and still not get the results you’re looking for.

Other times, you may be able to hit your HbA1c target and reduce your chance of complications. However, the people swayed by stigma may not understand the work you’ve put in or the progress you’ve made.

Busting common type 2 diabetes myths

Myths are ideas that are widely believed but often incorrect. Stigma can result from myths. 

Myth: People cause their diabetes by making poor choices

Bodyweight and activity level are only part of the reason some people develop type 2 diabetes. Research shows that genetics also play a significant role. In fact, family history is a larger contributing factor in the development of type 2 diabetes than it is for type 1 diabetes. Your chance of having type 2 diabetes increases if you have a parent or sibling who also has the condition. 

Race also plays a part. White people are more likely to develop type 1 diabetes. However, type 2 diabetes is more likely to occur in other ethnic backgrounds and ancestory.

Age is also related to an increased chance of type 2 diabetes. Although it’s possible for children to be diagnosed with type 2 diabetes, it’s significantly more likely to occur in people over 45 years old.

If you’ve had an organ transplant, the medication you need to take may also cause type 2 diabetes. It’s estimated that 10-40% of people who’ve had an organ transplant eventually develop diabetes.

Even if type 2 diabetes is linked to excess body weight, this may be due to causes that aren’t connected to diet and exercise, such as:

·       underactive thyroid

·       polycystic ovary syndrome

·       Cushing syndrome

·       genetics

There are many reasons not connected to lifestyle that a person may develop type 2 diabetes.

Myth: It’s your fault if your blood sugar level isn’t in your target range

When you live with diabetes, there are factors that affect your blood sugar that you may be able to control some of the time. These include:

·       diet

·       exercise

·       hydration

·       oral medication

·       insulin therapy

·       sleep schedule

Even these controllable elements can present challenges. Not everyone has access to healthy, affordable food. Some people have medical conditions that make exercise more challenging. The cost of diabetes medications and supplies can be prohibitive. In addition, life events can disrupt sleep or change your sleep schedule unexpectedly.

Aside from this, there are other factors that can influence blood sugar levels that may be out of your control. Some of these include:

·       hormones

·       stress

·       illness

·       dawn phenomenon

·       allergies

·       menstruation

·       puberty

·       outdoor temperature

·       insomnia

At times, blood sugar can be unpredictable and difficult to keep in range for anyone living with diabetes.

Myth: People with type 2 diabetes need insulin because they haven’t managed diabetes well enough

Diabetes stigma is particularly high among those who take insulin. This may be due, in part, to the misconception that needing to take insulin means you’ve failed at managing type 2 diabetes. Type 2 diabetes is a progressive condition. This means that as time goes on, the treatment that previously worked may no longer be enough to manage your blood sugar.

Some people with type 2 diabetes will eventually need insulin, while others won’t. Disease progression is different for everyone. Whether you need insulin may not have anything to do with how well you’ve managed your condition.

How does stigma impact mental health and diabetes management?

If you’ve ever felt like type 2 diabetes is taking a toll on your mental health, you’re not alone. Stigma and the shame and blame associated with it can cause people living with diabetes to feel stress and depression. It may also cause emotions such as:

·       guilt

·       anxiety

·       fear

·       embarrassment

·       low self-esteem

In addition to having mental health effects, stigma can interfere with how well you manage diabetes. Research links self-stigma for both bodyweight and diabetes to a negative impact on diabetes self-care.

Feeling stigmatised may make you less likely to take the steps needed to manage type 2 diabetes while in public. You might not want to check your blood sugar or your insulin pump when you’re around other people, for example. Injecting insulin while others can watch might make you feel self-conscious, which might lead you to delay or skip your dose. If you’ve ever felt criticised by a healthcare professional, you might be tempted to delay important checks like HbA1c tests, eye exams, or blood tests to assess your overall health.

How to mentally deal with diabetes

People with diabetes are more likely to have depression and anxiety than those without the condition. You may also experience diabetes burnout. This occurs when you feel stressed, overwhelmed, or emotionally drained by the daily care required to manage diabetes.

Dealing with stigma and the feelings of shame and blame that often go along with it can also affect your mental and emotional health. If you’re concerned about the impact of diabetes on your mental health, ask your doctor for a referral to a mental health professional. 

They may recommend therapy, such as talk therapy or cognitive behavioral therapy, to help you deal with the mental and emotional challenges of living with diabetes. They may also prescribe medication to help treat depression or anxiety.

What you can do to overcome stigma

The first step to overcoming stigma is to recognise that it exists and that it’s based on inaccurate information. It’s not your fault if you have type 2 diabetes. As you learn more about type 2 diabetes, you’ll get a clearer sense of how you can support your health and make self-care your priority.

There’s tremendous value in connecting with others who share your experience, whether it’s in person or in an online support group. Now’s your chance to meet new, like-minded people. 

Stigma around type 2 diabetes can cause you to feel judged, ashamed, or guilty about having the condition. This can impact your mental health and may discourage you from taking the steps needed to manage the condition.

Finding ways to overcome stigma can help improve your mental health and your diabetes care. Educating yourself about the condition, joining a support group, and talking with a mental health professional can help.

Extracts taken from Nancy Lovering from https://www.healthline.com