November 22, 2021 Changing the conversation: diabetes, stigma and myth

Donna Graham is no stranger to type 2 diabetes. Long before the 65-year-old from Edmonton was diagnosed in 2005, no fewer than seven members of her family had the chronic health condition, including both of her parents. However, despite the fact that type 2 accounts for 90 percent of Canadians who are diagnosed, myth, stigma and plain old ignorance are still common as Donna learned firsthand.

Caring for a family member with diabetes

When her mother was in poor health, Donna spent a lot of time helping her father who had been put on insulin in his 50s, but due to lifestyle, lack of exercise, work stress and other health issues had difficulty maintaining his diet. By his mid-70s, he began to experience hypoglycemia, or low blood sugar. He had brittle diabetes which meant it was difficult to manage him blood sugar. “Many the episodes were alarming,” says Donna, who recalls her father slipping into a coma several times. When he was brought to the hospital by ambulance from his retirement resident, she says, “I was able to communicate that my father had brittle diabetes and wore a medical ID bracelet as an indicator that his blood sugar might be low. The ambulance personnel failed to check for this and when I arrived at the hospital I could see he was sweating and smell the ketoacidosis [which smells like alcohol],” she says.

On another occasion I received a call from the emergency doctor who had seen my dad quickly when he was brought in. He said I should ensure that this didn’t happen again because my father was drunk. I was disappointed with the diagnosis as it felt like a judgement based on erroneous information, without all the facts.

Day-to day living after a diagnosis

“My mother cooked and prepared meals that didn’t have white sugar in them,” says Donna. “I believe that this was a clear example of the misunderstanding that sugar is a form of carbohydrate, which represents a larger category of foods such as starchy vegetables, bread and baked goods, and alternate sweeteners such as honey and syrups.”

By the time she was diagnosed at the age of 49, Donna had learned that “diabetes cannot just be managed by eliminating sugar and candy”—a myth that she believes education could easily resolve. 

Initially, making changes meant making sacrifices.  This required building a positive attitude. It’s not about what you can’t have; it is about what you can have.

She attended two group sessions at a diabetes education clinic, but found it frustrating. “The dialogue between the attendees consisted of complaints about the lifestyle changes needed to manage diabetes. This included keeping a schedule, monitoring blood sugar, and in many cases taking the required medications,” she says. “I understood that their recent diagnosis was a shock to them and they had minimal information as to the significance of managing type 2 diabetes. The clinicians were well informed but had difficulty convincing attendees that this was a lifetime commitment.”

Donna has seen the same response in members of her own family who have refused to take their diabetes diagnosis seriously, despite the fact that uncontrolled diabetes can lead to a host of complications.
 

Dealing with diabetes on the job

Managing diabetes is not just something people do in their personal time, it’s 24/7 which means it can be impacted by other situations, especially at work.

Donna's job at a high profile social agency underscored how challenging it can be for someone  with diabetes if they don’t have the necessary support and feel stigmatized.

“During my onboarding, the executive director made a commitment to me that she would be conscious of needs of a diabetic to remain healthy and adhere to the schedule required," she says. "Although she appeared to be more than willing to help, this was quickly forgotten.”

Her boss brought muffins, donuts and baked goods to team meetings, which often lasted for a few hours without a break. While her other two colleagues who lived with diabetes often ate the snacks on offer, Donna avoided them for fear of becoming “listless and tired from the carb overload,” she says. When she asked to bring in her own fruit or vegetables, her boss told her that bringing in her own food would be an insult.

Snacks weren’t the only challenge during staff meetings that often lasted for a few hours without a break. Donna recalls one time when her boss came into her office to talk. “She noticed the small receptacle on my desk for discarded testing needles [lancets] and strips. Although I didn’t use insulin at this time [after breast cancer treatment in 2018, she went on insulin], I still got the containers at the pharmacy and turned them in when they were full.” Her boss’s response? “She became quite furious and told me to take it off my desk as it was disgusting and embarrassing for people to have to look at it,” Donna says, adding, “This is the most memorable lack of support [I experienced in a job]. Stigmatized may be a gentle word to describe the workplace toxicity of an environment in which the necessity of managing a chronic condition like diabetes was minimalized.”

Fortunately, Donna did find support when she got a job with the Canadian Diabetes Association (now Diabetes Canada) in the former Alberta Monitoring for Health program. “This opened a world of travel throughout Alberta, marketing and community engagement and interacting with pharmacists, medical personnel and supports. Without a doubt, this job provided me with great learning and a passion to provide hope for people with diabetes.”
 

Advice for others with T2D

“Type 2 diabetes requires a schedule, exercise and planning to maintain a balanced lifestyle that focuses on remaining healthy."

Take diabetes seriously, listen to the treatment team, read the material available, and don’t fall into the Internet/marketing articles trap about curing diabetes with pills, supplements, etc.

Donna uses social media to foster an understanding of diabetes, provide support, and share resources. “I have been doing this through Facebook/Instagram for a long time all year around, but Diabetes Awareness Month is the perfect time to step up my efforts.”

Did you know?

Even after 100 years of insulin, 1 in 3 Canadians are living with or at risk of diabetes. We can all play a role in ending diabetes. Whether it’s raising awareness, having your A1C tested, knowing your risk, or supporting research towards a cure—every action, no matter how big or small, makes a difference.

This November during Diabetes Awareness Month help us reach 100,000 actions to End Diabetes. Take action now and share it on diabetes.ca/takeaction. #LetEndDiabetes