How 2 Type 1: Navigating the World of Type 1 Diabetes

Brooks Roche

Manager, Patient Knowledge & Connection, Diabetes Canada

Dr. Michael Vallis

Registered Health Psychologist & Lead, Behaviour Change Institute,
Halifax, N.S.

New video series from Diabetes Canada offers accessible and actionable information to help people better understand and manage diabetes.

Brooks Roche was diagnosed with type 1 diabetes 21 years ago, just shy of his fourth birthday. Every day since, with the help of his caregivers, he has had to administer insulin, monitor his blood sugar, and carefully plan all his meals and activities to make sure his body can function properly. “I was trying to do all this, along with all the other learnings that are necessary in growing up and just finding my place in the world,” he says. “It’s been a huge skillset to learn and a huge burden on me, my parents, my caregivers, teachers, and friends.”

In living with this disease most of his life, Roche says he was always struck by how diabetes management focused solely on good health outcomes. “It was about how doing this makes you a so-called ‘good diabetic’ and doing that makes you a bad one, but there are dozens of other factors that can have an impact,” he says. “If you divide a person’s health outcomes into good or bad, inherently they’re going to feel judged.”

That’s why Roche, Manager of Patient Knowledge and Connection at Diabetes Canada, was particularly excited to be part of a team responsible for developing a new tool for people with type 1 diabetes that takes a different approach to managing the disease. The 12-part series, called How 2 Type 1, was recently launched by Diabetes Canada and features short informational videos using visual metaphors and easy-to-understand concepts to cover a variety of important subjects for people with type 1 diabetes and their caregivers.

We’ve been talking at people with diabetes as health-care providers, and instead, we want to work together and empower them.

Dr. Michael Vallis

Topics range from accepting you have the disease and knowing the basics of how it affects the body to how you can maximize the positive effects of exercise and tap into the mind-body connection to better manage care.

Dr. Michael Vallis, a registered health psychologist and Lead of the Behaviour Change Institute in Halifax, N.S., was consulted in developing the video series. He expects it will help fill a gap in how information is relayed around type 1 diabetes. “We’ve been talking at people with diabetes as health-care providers, and instead, we want to work together and empower them,” he says. “With the traditional ‘teach and tell’ model, people are either good or bad students and since everyone has a life that dominates their focus, they’re telling us they just don’t have time.”

The fact that type 1 diabetes affects people at a much younger age than type 2 means they’re also consuming information differently, says Dr. Vallis. “They’re going to online forums for information and want their doctors to text them,” he says. “They don’t see themselves among the older people with type 2 diabetes typically waiting for an appointment in an endocrinology clinic.”

With type 1 making up only 5 to 10 per cent of the overall prevalence of diabetes cases in Canada, Dr. Vallis says this group of patients often feels like second-class citizens, with treatment protocols that don’t apply to them. Whereas people with type 2 diabetes are being encouraged to exercise more and eat better, he says most people with type 1 are already very active. “They’re tremendously motivated; however, they’re also at high risk of burnout because it tires them out and they can’t do it perfectly,” he says. “There’s also a lot of evidence that shows the more you criticize yourself for your past failures, the harder it is to get back on track.”

Dr. Vallis says the research shows that 60 per cent of people with diabetes live with diabetes distress, including the emotional burden of living with the disease and the fatigue associated with constant monitoring. “With type 1, it’s great that you can monitor blood glucose every five minutes now, for example, but that’s a lot of data that gets pushed onto people to digest.”

In this series, short videos under five minutes each are meant to inspire curiosity so that people will go back to talk to their health-care providers about concerns — and seek further information and tools available through Diabetes Canada at diabetes.ca. “It’s about creating some compassion for the challenges of diabetes and taking out any notion of judgement,” says Dr. Vallis.

Roche admits that living with type 1 diabetes can sometimes be a lonely and misunderstood place. “I think this video series can be a powerful tool for changing the conversation around type 1 diabetes, and in some small but significant way, it’ll help reduce the stigma associated with this condition,” he says.