Stigma adds to burden of type 1 diabetes
"I would do my injections and testing in private [in another room or even the bathroom] to avoid having conversations about diabetes with people," he said.
It was also to avoid stares from strangers or awkward questions about how he got the blood sugar disease. People would sometimes ask, "Was it from eating too much fast food?" Wright recalled.
For some teens and young adults, feeling stigmatized leads them to ignore or forgo their diabetes management. This kind of stigma can lead to worse diabetes care, and a team of researchers (including Wright while he was a college student) recently examined the issue.
The Canadian online survey of nearly 400 teens and young adults (ages 14 to 24) with type 1 diabetes found that stigma is pervasive. Nearly two-thirds reported feeling stigma because of their disease. And feeling stigmatized was linked to a twofold higher risk of poor blood sugar management, the study found.
"People who felt stigma had slightly less of a sense of well-being. Stigma doesn't make people feel good, and it can impair how the condition is managed," said senior study author Dr. Kaberi Dasgupta. She's an associate professor of medicine at McGill University in Montreal.
With type 1 diabetes, the immune system mistakenly attacks healthy, insulin-producing cells in the pancreas. Insulin is a hormone that helps usher the sugar from foods into the cells to be used as fuel. Someone with type 1 diabetes no longer makes enough insulin on their own, and must replace it with injections or an insulin pump.
The study also looked at severe low blood sugar levels (hypoglycemia) that required assistance from another person to treat. Hypoglycemia occurs when someone takes too much insulin, causing shaking, sweating, a fast heart rate and changes in behavior. If blood sugar levels drop too low, passing out and seizures can happen, according to the U.S. National Institute of Diabetes and Digestive and Kidney Diseases.
"Among those who reported stigma, they were three times more likely to have had severe hypoglycemia," Dasgupta noted. They were also more likely to have poor blood sugar management.
But, she noted, it's difficult to know which came first. She said that having a severe hypoglycemia episode could certainly make someone more self-conscious, but it's also possible that feeling stigmatized might have led someone to forgo blood sugar testing, which could lead to severe low blood sugar.
"It's hard to know, but I think it's probably a combination. I don't think it's all perceived," Dasgupta said.
The study was published recently in the Journal of Medical Internet Research.
Dr. Mary Pat Gallagher is director of the Pediatric Diabetes Center at Hassenfeld Children's Hospital at NYU Langone Health in New York City.
"It's a very normal thing for this age group to feel different anyway, so we have to come up with some creative solutions to work with them where they are," she said.
"Diabetes management doesn't have to be 100 percent by the book all the time. Work with a child on how they'll be comfortable but safe," Gallagher suggested.
She described a patient who wouldn't inject insulin in front of friends. Gallagher convinced him to try a particularly discreet insulin pump, and he now gets his insulin when he needs it.
And Gallagher noted that the study found a feeling of stigma doesn't end in the teen years.
"Stigma was reported in more of the young adults than in the adolescents. As you begin your careers, maybe you're more conscious of being perceived as having a vulnerability or weakness in the workplace, instead of being viewed as capable," she said.
The study authors—including Wright—created a virtual support group for type 1 teens and young adults in Canada.
"I would like people to know that living with type 1 diabetes is a full-time job which we are not allowed to quit or take a vacation from," said Wright, now 22 and a college graduate. "It requires 24/7 monitoring of insulin and blood sugar levels, which can become very overwhelming. [The support group] has helped me tremendously in not feeling alone with this disease."
Learn more about living with type 1 diabetes from the American Diabetes Association.
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