Being a teenager or early 20-something can be challenging. Add on trying to fit in with peers while managing type 1 diabetes, and it can be very tough. An important Canadian study, supported by Diabetes Canada, recently showed that negative social feedback, also known as stigma, can have serious health risks.
Dr. Kaberi Dasgupta and her colleagues at the Research Institute of the McGill University Health Centre published a study earlier this year revealing that this stigma results in greater risk of complications. Of the 380 participants, 65 per cent of respondents said they experienced stigma. The impact was profound: they were three times as likely to have had a serious low blood sugar event and twice as likely to have had a high blood sugar event in the previous year.
While both type 1 and type 2 diabetes damage the body over the long term, type 1 puts people at much higher immediate risk. Low blood sugar (triggered by too much insulin) can result in confusion, unconsciousness and even death. Over the longer term, high blood sugar (caused by too little insulin) damages blood vessels and nerves, leading to complications that include blindness and kidney failure, as well as high rates of heart disease. “The window between having controlled blood sugars that are not too high versus low sugars is very narrow,” says Dr. Dasgupta. “A small change in dose can be quite dangerous.”
The onset of type 1 diabetes generally happens early in life – a time when people are discovering their identity, she explains. “Fitting in is very important, so there are a lot of reasons why you might feel stigmatized by your condition.”
This stigma isn’t imagined. Sarah Baker, who was diagnosed at age 12, recalls a school trip to Europe where the waiter refused to serve her dessert because someone had mentioned her diabetes. Study participants said their insulin injections had been mistaken for illegal drug use.
Following up on the study, Dr. Dasgupta and her team partnered with Diabetes Canada and the Canadian Institutes for Health Research to create a Virtual Peer Network (VPN) for people with diabetes, ages 14 to 24. A private Facebook group, the VPN also connects young people with researchers and clinicians.
Peer leaders Sarah Baker, Michael Wright, Jordan McCarron, Alexandra Kellington, Melinda Provost, Zoeie Major-Orfao and Mariam Elkeraby help participants connect and share experiences, information, tools and videos. Ms. Elkeraby, who also writes a blog that covers subjects like reviews on diabetes technology and maintaining good blood sugar levels after eating ice cream and playing soccer, writes, “I guess there’s one thing we can all agree on: diabetes is not easy! It takes effort, planning and a whole lot of time to manage. However, with every age group, diabetes presents you with a set of unique challenges and obstacles.”
Having easy access to people you can relate to and who share many of your challenges can be life-changing, she notes.
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