To some without the disease, people with diabetes are presented as overweight, lazy and guilty of bringing the disease upon themselves – often illustrated by faceless overweight people in reports on network news. On social media, images of large amounts of sweets often accompany the word diabetes.

People with diabetes are those people who must prick their fingers, inject themselves with insulin or carry around an insulin pump or a bag of medications. If they just got off the couch and stopped eating too much sugar, they would never have gotten the disease to begin with, right? Wrong.

“Diabetes is a complex disease,” diabetes educator Janis Roszler told Drugwatch. “For example, not everyone who is overweight develops it, and many who have Type 2 are thin.”

While being overweight is a known risk factor for Type 2 diabetes, those who have a family history of the disease, or had it while pregnant, are also at risk, regardless of weight. And Type 1 is actually an autoimmune disorder that occurs when the body destroys its own insulin-producing cells.

These are just a few myths about the disease that people with diabetes face on a daily basis. According to Roszler, there are people with diabetes who “feel they are damaged in some way.”

Through developing support and coping mechanisms, and education, people with diabetes can feel more equipped to manage it. And, hopefully, other people’s non judgemental attitudes and understanding will also lead to more compassion and support for those coping with diabetes.

Diabetes stigma: the blame and shame game

Fat, obese, overweight, big fat pig, lazy, slothful, couch potato, over-eater and glutton – these were a few of the negative stereotypes associated with people with Type 2 diabetes, according to participants in a study conducted by Jessica L. Browne and colleagues published in 2013 in BMJ.

“Once again, these stereotypes reflected the idea that you brought it on yourself,” Browne and colleagues wrote. “Less frequently reported, were stereotypes of people with Type 2 diabetes being poor people, not terribly intelligent, as well as being a shocking person or bad person and injecting insulin.”

Few other diseases carry the social stigma of diabetes. For example, most people never blame breast cancer patients for getting cancer. There are a number of positive, empowering campaigns for cancer cures and awareness. Supporters wear pink and celebrate survivors. According to the American Cancer Society, the five-year survival rate for women with breast cancer that has not spread is nearly 100%.

“Many cancers are curable. There is no current cure for diabetes that is available to the general public,” said Roszler. “Those who have it must monitor what they eat, check their blood, take their medication (if needed) and stay physically active to stay healthy.”

But in contrast to other diseases, the public is less accepting or encouraging of people living with diabetes. In fact, studies show more than half of Americans with Type 1 and 2 diabetes feel others blame them for their disease. A staggering 83% of parents of children with Type 1 feel the public blames them for causing their child’s disease.

“I think the stigma is that it’s a lifestyle disease. That somehow you’ve been lazy, and you’ve allowed this to happen to yourself,” – 54-year-old woman with Type 2 diabetes, 2013 Browne et al. study in BMJ

A common practice among healthcare providers and people without diabetes is to call someone with the disease a ‘diabetic’. Karen Kemmis, a diabetes educator with SUNY Upstate Medical University in Syracuse, New York, said this labelling is a “huge pet peeve” of hers and many educators and people with diabetes. According to Kemmis, this depersonalisation contributes to the stigma. “We don’t call someone who has cancer a ‘canceric’ and shouldn’t call someone with COPD a COPDer,” Kemmis told Drugwatch. “But, somehow, it seems acceptable to many to call someone a diabetic. No, they have diabetes. We should use person-first language rather than label someone by a disease.”

The burden of diabetes on those affected can be considerable. Experts call it diabetes distress – a mixture of depression, anxiety and stress. Research conducted by Dr Lawrence Fisher, Professor at the Diabetes Centre of the University of California in San Francisco, found about half of people with diabetes will experience it.

Fisher found one of the contributing factors to the distress is ‘social burden’. The stigma attached to the disease takes its toll, Fisher told Diabetes Forecast. Researchers found suffering from distress and stigma-induced shame leads to poor self-care and worse health outcomes.

“Elevations in depressive symptoms and/or diabetes-related distress should be recognised as a predictor of problems with medication adherence in adults with Type 2 diabetes,” Dr Jeffrey S. Gonzalez, Associate Professor of Psychology at the Ferkauf Graduate School of Psychology of Yeshiva University, New York, told Endocrine Today.

The more intense the therapy, the more intense the stigma, Alexandra E. Folias and colleagues of dQ&A Market Research found. For instance, 43% of those with higher A1C levels who injected insulin or used a pump felt stigmatised, versus 25% of those with lower A1C levels.

The damaging stigma surrounding diabetes comes from a handful of myths. “I find a lot of people, they like to think of you as being the culprit. In fact, I actually had one person say, ‘Well, you’ve dug your grave with your own teeth.'” — 67-year-old man with Type 2 diabetes, 2013 Browne et al. study in BMJ

Sources of stigma

“That’s just the nature of diabetes. Sometimes you need medicine to reverse things that aren’t working metabolically in your body.” – Dr Floyd Russak, medical director of East-West Health Centres in Greenwood Village, Colorado.

There are several sources of diabetes stigma. These messages can affect people with and without diabetes, and many have a negative effect regardless of intent. Browne and colleagues identified the media, healthcare professionals and family and friends as the main sources.

Because of the stigma, newly diagnosed diabetes patients may even keep it a secret for fear of judgement. They fear discrimination at work and the sense of blame they may get from others. For example, one study participant said she felt the need to hide it because she had a high-ranking position at her company.

Stereotypes can even lead to discrimination and restricted opportunities i.e. negative perceptions of the disease, particularly if an individual is overweight. Discrimnation due to diabetes is very real and may affect job opportunities and relationships.

Media

Media is even more prevalent than ever, and people can watch TV or look online to see presentations of people with diabetes, particularly Type 2 diabetes. As our media shifts to digital content, the internet is a growing source of stigma. Mike Durbin is a 31-year-old health blogger diagnosed with Type 2 diabetes and congestive heart failure in 2008. In an interview with Diabetes Forecast, he spoke about reader comments on his 2011 USA Today profile. “Some of the [online comments] were: ‘If this guy would just get off his [couch] and do something, try exercising, try eating better, [he wouldn’t have diabetes]’ — most of the typical comments that you hear toward people with Type 2,” he said. “I’ve gotten to where I really don’t take much of that to heart. It would really just eat you alive if you did.”

Browne’s research points to two views expressed in the media: Type 2 is a lifestyle disease, and emphasis on being overweight and physically inactive reinforced blaming attitudes. People with Type 2 diabetes also felt media often used scare tactics and sensationalism to describe the ‘diabetes epidemic’. Few stories or features focus on people who successfully manage the disease, and many of the characters with diabetes in movies or series are sensationalised or portray diabetes inaccurately.

Healthcare professionals

Healthcare professionals are also a source of negative feelings and stigma. Participants in Browne’s study reported their doctors focused on what patients did ‘wrong’. An example of this could be when patients are marked non-compliant in their files without a doctor trying to find out what could be contributing to the high glucose levels. Patients wanted more encouraging behaviour and helpful tips on how to improve. Patients instead reported feeling discouraged and judged.

“The reason is clear: Type 2 diabetes sufferers tend to be obese, and we still think of obesity as a self-created illness, caused by too much eating and too little exercise,” Dr Sanjay Gupta wrote in Everyday Health. “Even some doctors will admit they are less sympathetic to their diabetic patients.”

In a story about stigma, Gupta interviewed Dr Peter Attia, a physician who judged his patients with Type 2 because they were overweight until he had his own run-in with prediabetes. “[My patient] was in the emergency room for a condition I considered completely preventable,” Attia told Gupta. “She did in fact sense this was a physician who was judging her.”

But, while he judged his patients, Attia was borderline obese despite daily exercise and healthy eating. Then he found out he had prediabetes. Now he speaks about shedding the stigma of obesity and diabetes.

Another misconception that may spread among healthcare practitioners is that people with Type 2 diabetes need to lose large numbers of weight to make a difference. The information may be discouraging to people with diabetes. “Many people think they need to lose 20 to 45 kilograms, when studies show that diabetes management can change with a modest 2 to 4kg weight loss and moderate exercise of 30 minutes, five days per week,” Karen Kemmis told Drugwatch.

“The dietician was awful… she asked me if I exercise, and I said, ‘I do the gym twice a week and I have consistently since November.’ ‘That’s not enough, you need to go five times a week.’ This makes me really angry.” – 35-year-old woman with Type 2 diabetes, 2013 Browne et al. study in BMJ

“There’s no good news stories about Type 2 diabetes. Perhaps there should be. Perhaps it should be ‘it isn’t necessarily a death sentence.” – 54-year-old man with Type 2 diabetes, 2013 Browne et al. study in BMJ.

Friends, family and colleagues

“I’d love it if you offer me what [food] you’re handing around and I can say ‘yes’ or ‘no thanks,’ that would be nice really. That makes me feel excluded.” – 59-year-old-woman with Type 2 diabetes, 2013 Browne et al. study in BMJ.

Despite the best intentions, family and friends may be hurtful and judgmental. People with Type 2 described the behaviour as “unhelpful, annoying or discouraging” and found it “hurtful, judgmental and interfering.”

“We talk about the ‘diabetes police’ who might be friends or family that watch a person with diabetes and tell them what they should and shouldn’t do,” said Kemmis. “No one likes to be told what to do or eat. It’s the idea that it is the person’s own fault for getting themselves into this mess.”

Significant others and dating

Type 2 diabetes stigma also extends to social life, particularly in intimate situations with spouses or even dating. When it comes to intimacy with a spouse or partner, the fear can be crippling.

Diabetes educator Janis Roszler is also a marriage and family therapist, and she has seen the stigma affect marriages and relationships.” About half of all men and women with diabetes develop some form of sexual complication,” Roszler told Drugwatch. “Men who struggle with their diabetes management are at an increased risk of developing erectile dysfunction. Women may have vaginal dryness, pain during intercourse, arousal and orgasm challenges, and an increased incidence of urinary tract infections.” Sexual dysfunction of any kind already comes with a hefty dose of shame, and according to Roszler, diabetes-related dysfunction adds more shame to it.

“They worry that others may not want to date someone who lives with a chronic disease that requires so much daily attention,” she said. “I’ve interviewed many people with diabetes who struggled to find a positive way to tell people they date about their diabetes.”

While it can be difficult to overcome, Roszler offers some suggestions to lessen the anger and frustration that can come with diabetes-related complications.

“Give ‘diabetes’ a name, and treat it like a totally separate entity,” she said. “I know of a couple who named the husband’s diabetes ‘George.’ When the husband started to feel his blood sugar drop during sexual activity, they blamed ‘George’ for making trouble, not the husband.”

“When I first got diabetes, I wouldn’t tell anybody. I didn’t even tell my husband. I told nobody. I felt so ashamed to have it. I felt completely ashamed of myself.” – 56-year-old-woman with Type 2 diabetes, 2013 Browne et al. study in BMJ.