October 27, 2023 Striking out the stigma

Initially, Ruth Masuka, 23, wanted to keep her diabetes a secret—in part because she was not sure how to answer people’s questions. Now, she says, she embraces her diagnosis and works to raise awareness about diabetes “rather than trying to hide it.”

Ruth’s diagnosis of type 1 diabetes (T1D) came on her first day of Grade 9, when she ended up in the emergency department with a high blood sugar level after being sick for a week. At first, she blamed herself. “I didn’t have a lot of knowledge about diabetes, so I thought I got it because I ate too much sugar or didn’t exercise enough.” Some of her classmates thought the same thing. “My friends would say, ‘What did you do to get this?’” When she went out for lunch with them and ordered a doughnut, they would ask her if she was allowed to eat it. Some of her friends were scared of needles and got nervous when she would inject. So she started injecting and testing in the bathroom, out of sight of other people. “I started to feel confined by all this and just wanted to keep it a secret.”

In 2015, then-15-year-old Ruth attended Diabetes Canada D-Camps. “Meeting so many kids with diabetes—some as young as seven—really opened my eyes and gave me the strength to deal with things. They have been my biggest inspirations because so many of them are happy bundles of joy,” she says, adding, “I met so many people I could connect with who were dealing with the same things I was.” In 2016, Ruth completed the D-Camps leadership development program and spent the summer working as a counsellor at two camps. That fall, she served as president of the Grade 12 student council at her Hamilton, Ont., high school.

Those positive experiences almost did not happen. Ruth did not want to attend D-Camps at first, but her mother, Aida, pushed her to go. “I didn’t really give her a choice,” says Aida. “I knew being around other kids with diabetes would be a positive experience. And when she came back, she told me she was glad she’d gone.” Similarly, Ruth was not keen on using an insulin pump, even though her mother encouraged her to try it. “After coming home from camp and seeing so many other kids using the pump, she said she was ready,” says Aida.

Ruth, who is “doing amazing” according to her mother, graduated from the University of Toronto in 2022, and is currently working on her master’s degree in social work. Says Ruth,

At first when I was diagnosed, I wanted to keep the diabetes a secret. But that meant the diabetes was controlling me, rather than me controlling it.

She is living proof of what is possible when you are in the driver’s seat.

Finding your community

For Lara Abramson, who lives with type 1, Valentine’s Day celebrations in elementary school were not the happiest of memories. “The teacher would hand out cinnamon hearts to everyone else and tell me I couldn’t have any. And then she’d give me an apple.” That was not the first time Lara would be made to feel different. In Grade 9, a boy told her he did not want to date her because she had diabetes. “He said he was afraid of catching what I had.”

Now 44 and living in Nova Scotia, Lara says: “When you are a kid, sometimes it’s hard to stand up for yourself.

When people tell you that you can’t do something because of your diabetes, you can automatically shut down and internalize those feelings.

Fortunately, Lara did not let that happen to her. She attended D-Camps when she was eight years old and met other kids and teens living with type 1 diabetes, and later worked as Diabetes Canada’s West and Atlantic camps manager. “It brought out a lot of confidence in me and gave me the opportunity to try new activities,” she says. “Most importantly, I met my best friends there.”

It’s okay to be yourself

While there have been major advances in the treatment of the disease, young people today are still sometimes blamed and shamed for having diabetes because of others’ misinformation or ignorance. But some young people are pushing back against this, such as 21-year-old Preston Swan-Merrison of London, Ont. Preston, who spent six summers at D-Camps, says the camp experience really boosted his confidence. And he needed that boost: He remembers that after he was diagnosed in Grade 4, the other kids would physically move away from him when he boarded the school bus. Sometimes he was not invited to sleepovers because his friends’ parents worried about his safety when he was in their care. Says his mother, Josie,

Preston felt like kids were making fun of him and didn’t want to be near him. He was the only one in his school with type 1 diabetes. I told him he had to break the stigma by educating people. And that’s exactly what he did.

As a goalie with the Junior Knights rep hockey team in London, Ont., Preston made several presentations to his teammates about living with type 1 diabetes and why he sometimes left the ice to treat a low. He collaborated with author Aaron Bengall on Preston’s Big Game, which talks about how diabetes can affect his body during a game, and created a Facebook page with the same name. His openness and confidence have led to many face-to-face meetings with kids newly diagnosed with type 1 diabetes. “They want another kid to talk to,” says Preston. “Sometimes they are hiding the fact that they have diabetes. My job is to tell them it’s okay to come out of their shell.”

In his last year of high school, he wrote another diabetes education book along with his Grade 12 Spanish class and Aaron. He says, “The Big Button Saves the Day has helped many young people who are newly diagnosed with T1D, and it’s great to see that it is in Spanish.”

Still an avid competitive hockey player, Preston played for the Napanee Raiders in 2021 and currently plays for the Tilbury Bluebirds hockey club. “My passion for hockey and keeping active are really important to me and help with both my physical and mental health.”

Now in his fourth year at the University of Windsor in a concurrent education program specializing in French and kinesiology, he hopes to be a teacher. “My first two years were online due to the COVID lockdowns. It was a challenge, that’s for sure. Unfortunately, due to the pandemic, I never had the opportunity to work at one of Diabetes Canada’s summer D-Camps as I had planned, but hopefully in the future I can go back and be a part of those camps somehow.”

For the first time, Preston has been living away from home with five other roommates, which has been an adventure and a great experience thus far. He has also started using a new insulin pump and continuous glucose monitoring system to better manage his diabetes; it has been a big learning curve, he says, but a good one. “I still mentor youth with T1D when I am asked or when an opportunity arises, and I still try to provide as much awareness and break down the stigma that is sometimes associated with T1D,” he says, adding, “I feel like I will always be committed to educating others about what it’s like to live with this disease and seek a cure. I will always live with the hope that a cure is just around the corner.”

Stopping the shame and blame game

Preston and Ruth are committed to educating others about what it is like to live with the condition, and to ending the stigma—by focusing on the shame, blame, stigma, and misinformation about diabetes. These two young people were also YouTube “stars” who appeared in a Diabetes Canada video about growing up with type 1 diabetes.

Lara, who can relate, says,

For years, people with diabetes have been dealing with different types of stigma. This is especially true for people with type 2 diabetes, where there is a lot of judgment. This crosses over to people with type 1 diabetes as well. It’s time to stop the myths and misconceptions.

How do you deal with the stigma of diabetes?

Ruth, Preston, and Lara offer their advice.

1. Be strong. “When you have diabetes, people can sometimes be insensitive. They don’t do it purposefully and they don’t want to hurt you,” says Ruth. “Every single time you teach another person about what it’s like to have diabetes, you make an impact. Those people will tell others and in the end that helps us all.”

2. Help raise awareness. Writing a book and creating a Facebook page for people with type 1 diabetes was the solution Preston found, but there are plenty of other ways to raise awareness, whether it is doing a school project on diabetes, making a YouTube video, or fundraising.

3. Be patient. Usually people are not trying to be mean when they make an unacceptable comment about your diabetes—they just are not aware of what it is, says Lara. “Educating them in a respectful manner is your best bet. Sometimes you may want to scowl and walk away if people say something hurtful, but it’s better to start a conversation.”

4. Be prepared. Have an answer ready for when people ask you about what it is like to have diabetes. For example, if someone asks you about the device you are wearing, you can say, “This is my insulin pump. It keeps me alive.”

This updated article originally appeared in Diabetes Dialogue.

Did you know?

Diabetes Awareness Month is a time when individuals, community groups and organizations around the globe bring attention to diabetes and urge action to tackle this epidemic that affects 1 in 3 people in Canada. We’re calling on Canadians to show support for people affected by diabetes by spending their time learning more about this too-often “invisible” condition and sharing that knowledge with their communities. Learn more at Let’s Make Time to End Diabetes. #LetsMakeTime #DiabetesAwarenessMonth