TORONTO — At 16, Michael Wright was shocked to learn he had developed Type 1 diabetes. Not only did he have to learn how to manage the condition with frequent blood-sugar checks and insulin injections, he quickly became aware of the stigma associated with having a chronic disease that set him apart from most of his peers.
“I didn’t want to show it in front of my friends, I didn’t want to seem uncool,” said the Montreal university student, now 22. “I was kind of embarrassed to do the injections in front of people because it’s visual. You can’t really be subtle about it.
“Doing it in the cafeteria with everyone around me was kind of unsettling,” admitted Wright. “I had to inject any time I ate anything, whether a snack or a meal — anything with carbohydrates, I had to count and give injections accordingly.”
Intense physical activity can also play havoc with blood-sugar levels. Wright, who played hockey and soccer, found it upsetting when he would have to bench himself periodically during a game to stabilize his glucose. “I wanted to play.”
Type 1 diabetes is an auto-immune disease that attacks the pancreas, leaving critical cells in the organ unable to secrete insulin that naturally regulates blood glucose levels related to food intake.
The disease differs from Type 2, which occurs when the body becomes resistant to insulin or when the pancreas stops producing enough of the hormone. Genetics and environmental factors, such as excess weight and inactivity, are thought to be contributing factors.
While Type 1 affects only 10 per cent of all diabetes patients, more than 90 per cent are under age 25.
For teens and young adults with Type 1 diabetes, stigma surrounding the difficult to manage condition can be a major issue at a time when they are faced with the stresses of going to school, figuring out their career path or starting jobs, as well as embarking on romantic relationships, said Dr. Kaberi Dasgupta of the Research Institute of the McGill University Health Centre.
In a study published Tuesday in the Journal of Medical Internet Research, Dasgupta and colleagues found that a sense of stigma can lead many young people to be neglectful of their diabetes health, putting them at potential risk of both short- and long-term complications.
The study involved 380 Canadians aged 14 to 24, who responded to a web-based questionnaire about their experiences with diabetes-related stigma and the effects on management of their disease. Participants were largely recruited through social media platforms, and their involvement included providing a blood sample that was checked for glucose levels.
Dasgupta said 65 per cent of respondents reported experiencing some form of stigma related to having Type 1 diabetes.
“The people who did experience a feeling of stigma were twice as likely to have either a … high level of blood sugar or an episode of severe hypoglycemia in the last year, meaning that they had a blood sugar level low enough that they required someone to come to their assistance,” she said from Montreal.
“In fact, people with stigma were three times as likely to have dangerous low blood sugar levels in the past year.”
A bout of hypoglycemia — caused by having too much insulin in the body — results in not enough glucose getting to the brain, causing confusion, slurred speech and potentially loss of consciousness.
“You could even die,” said Dasgupta, noting that the opposite danger is repeatedly having too little insulin and high blood sugar, which can damage blood vessels and lead to blindness, kidney failure and cardiovascular disease over time.
“Navigating that space between highs and lows can be very challenging.”
Beyond the difficulty of managing the lifelong disease, contending with people’s attitudes can also be a challenge, said Sarah Baker, 24, a study participant who was diagnosed with the disease at age 12.
“One of the biggest things is that (when) people hear diabetes, they automatically think Type 2, so there have been comments made like ‘Oh, you must have had a problem with sugar’ or ‘Oh wow, you’re pretty thin for having diabetes,’” said the Winnipeg social worker.
“Neither of those things have anything to do with having Type 1, so there’s a lot of that misconception that results in people’s uninformed comments.”
She recalled that while on a high school trip to Europe, a waiter in Italy refused to serve her dessert because the restaurant had been informed of her condition.
“Because of the language barrier and whatever the server’s assumptions were about what diabetes is, he refused to serve me dessert when everyone else was having it. So it became this huge thing and my friends in the group were like ‘she can have it’ and they’re giving up their desserts.
“And it could have been avoided with just better education,” said Baker, who now uses an insulin pump and a continuous blood-testing device that sends readings to her smartphone. “Those sorts of things come up a lot where people assume what my treatment should be because they think all diabetes is universal.”
Wright, who was one of two people with Type 1 diabetes who helped researchers design the study and analyze results, said a common theme heard from participants was feeling singled out in public when they had to inject insulin.
“A typical example I like to give is going to a food court and people stare at you bringing out a needle or giving yourself an injection, having eyes on you because you’re doing something so visual,” he said, adding that the assumption was that the person was shooting up an illicit drug.
“It’s one of the issues that the people in this study brought up, like strangers would be coming up to them saying not to do this around their children, or ‘Why are you doing this in a public place?’”
As a result of the study, the researchers helped put together a virtual private network (VPN), a Facebook community where members can support each other, reducing the sense of isolation that stigma surrounding their disease can cause.
“It’s helped a lot of people so far,” said Wright. “To have a place where we can interact easily with each other is really beneficial.”