Connected in Motion’s Lucy McGroarty on the Power of Community 

Instinctively, she felt the ground shift beneath her feet and knew nothing was as it was.

The following day, she was transferred to Toronto’s SickKids Hospital, a major pediatric teaching hospital in Ontario, Canada, to learn T1D basics. “Toronto has an incredible children’s hospital, and I became a patient there immediately. I remember injecting dolls with insulin (imagine the smell!) and colorful food charts with beautiful illustrations.”

McGroarty was fortunate to spend three days at SickKids with her parents by her side, recovering and learning how to manage diabetes. Some patients have reported being discharged without proper diabetes training.

McGroarty’s family, like most with no T1D history, were unaware of the signs, but once they understood the severity of the illness, she received incredible support.

Interesting Fact: According to the National Institutes of Health (NIH), up to 90% of all T1D cases have no family history of type 1 diabetes.

However, as McGroarty got older, she grew more determined to take charge of her illness. And as her life became more complex with school and extracurricular activities, so did her diabetes management.

At age 18, McGroarty moved to an adult diabetes clinic. Instead of feeling resilient, McGroarty said that she felt increasingly alone and overwhelmed with the responsibility.

The Invisible Disease

A vast amount of misperceptions surround type 1 diabetes in part because no one knows you have it. Unless they see a wearable device like an insulin pump, continuous glucose monitor (CGM), or insulin pen at lunch—it’s an invisible illness. Also, most people don’t realize type 1 diabetes can be life-threatening if your blood sugar level goes too low or too high.

McGroarty struggled with this, and toward the start of her master’s program at Emily Carr University in Vancouver, she felt depleted of the energy needed to manage her diabetes independently.

She knew she needed help but wasn’t sure where to go.

Apathy into Action

McGroarty decided to channel her daily battles with diabetes into her design thesis project. She intended to use design to change how she and others saw type 1 diabetes. Through her research, McGroarty found other T1Ds struggling with the same issues.

Diabetes Burnout

Through her thesis, McGroarty discovered emotional distress was common among individuals living with chronic illnesses. Her research involved speaking to young adults living with T1D.

Today, McGroarty said she handles diabetes burnout by finding ways to distract herself. “Something that makes me feel good in other ways – gardening, watching a film, painting a piece of furniture. But there are times I am much less productive, and on those days, I may order myself a piece of cake to have alongside my hot chocolate.”

A T1D Silver Lining

McGroarty discovered that a growing number of T1Ds felt optimistic about their diabetes and attributed this positivity to their connection with other type 1’s. The idea of friendship and community as a way to cope with diabetes challenges was new to her.

Over the next 18 months, McGroarty met with numerous T1Ds through diabetes support groups, social gatherings, fundraisers and forums. She began to appreciate the benefits of the diabetes base.

McGroarty soon found the importance of the diabetes community hard to articulate. “It’s this subconscious/conscious information gathering that I think is so key. I’ve been in situations in the past few years that relied on community support. Plus, WHO else really gets it?”

Lucy’s TEDx Talk

McGroarty participated in TEDxECUAD a student-run organized TED event at the Emily Carr University of Art & Design in Vancouver, British Columbia, Canada. TEDx programs with live speakers bring together individuals to share similar, inspiring ideas.

In her TEDx talk, McGroarty spoke of her diagnosis story, explaining that T1D is an autoimmune disorder and that she and other type 1 patients rely on external insulin for survival. Her project, "Every 1 Welcome:  Thinking Differently about Type 1 Diabetes," aimed at solving the ‘type 1 diabetes burnout’ problem faced by many T1Ds.  Her goal was to provide a secret refuge for young type 1 adults to seek inspiration and collaborate with other like-minded T1Ds.

McGroarty said she received the idea through much pondering. “No one in my program or design sphere had or knew much about T1D at the time. I needed a common language, which is how the idea of a secret society came to be in the first place. Then, I needed some way to inspire others to approach the adult community without feeling overwhelmed or simply uninterested. The idea grew from there!”

The Ever-Growing Diabetes Community

McGroarty noted in her TEDxECUAD that the T1D community offered support in three ways. 

1. A sense of connection.
2. Knowledge exchange.
3. Positive thinking.

“Through this dynamic support system, the community gives an individual a chance to rebuild their resilience and defeat burnout,” McGroarty said. She also saw that most T1Ds overlooked this community base as a resource because they felt they needed time away from their diabetes. Her new mission was to convince these T1Ds to join the T1D community for support and friendship.

The answer is in the language.

T1Ds in the diabetes community use language to connect. McGroarty uncovered terms like dia-buddy, di-anniversary and other common phrases. “These humorous hacks offered levity,” McGroarty said.

For more type one vernacular exchanges, see our list of Diabetes Slang: IYKYK.

In her thesis, McGroarty also used her gift of storytelling and what she learned in her undergrad. She shot a short film along Eastern Avenue in Toronto and showed how a simple story added context to a very industrial area. She then applied the same ‘language and story’ to convey the importance of community to type one individuals.

The Story of the 1 Club: A Secret Society of Type 1 Diabetics

McGroarty developed the idea of a secret T1D society and showed parallels between secret societies and the T1D community.

T1Ds already share bond-building rituals like testing blood sugars and counting carbs, as well as secret knowledge of improved diabetes management through tips and tricks. McGroarty invented a 1 Club crest, a neon sign, a new member letter and an oath of optimism to go with this covert club.

After her thesis, McGroarty created a “1 Talks” podcast about everyday experiences living with T1D, though it’s not an ongoing podcast currently.

McGroarty took her thesis lesson to heart. Months after graduating, she went exploring on a backpacking trip with other T1Ds through the beautiful countryside of Gros Morne National Park in Newfoundland and Labrador, Canada.

From there, she attended Connected in Motion Western Slipstream as part of her master’s thesis research. “Later that same year, I participated in Connected in Motion’s first ever Adventure Team Trek, which was an incredible experience.”  

Managing Director of Connected in Motion

Now, McGroarty is the managing director for Connected in Motion (CIM), a diabetes camp for adults with type 1 diabetes. CIM offers outdoor adventure, sports, and community building. The camp’s programs are based on experiential diabetes education and are designed to help people with T1D learn from each other and build a culture of support. Camp activities include hiking, biking, paddling, fireside chats and workshops. CIM sessions are held across Canada and the United States.  

McGroarty said her responsibilities vary in her role as managing director. She’s been on over 10 CIM Slipstream events and annually attends between one and three. McGroarty advices others to attend the CIM camps even if they’ve never been camping or don’t consider themselves athletic.

“CIM welcomes EVERYONE, which is why our Slipstream programs are designed to be ‘choose-your-own-adventure’ weekends,” said McGroarty. “Some participants choose to chat around the campfire; others choose to rock climb.”

Here, she highlights what CIM has to offer:

1. Being outside has incredible health benefits.
2. The opportunity to talk and listen to other T1Ds is therapeutic.
3. The T1D inside jokes (You have to attend to hear them).
4. The incredible educational sessions presented by experts in the field, many of whom have T1D.

Diabetes as a Source of Inspiration

What if everyone shifted their perceptions away from diabetes as a burden and instead as a teaching tool to assist others? It helps to know you’re not alone. There are dozens of ways to get involved with the diabetes community (online and offline).

If you’re struggling with burnout or distress or simply looking to get involved—find an organization near you. The American Diabetes Association (ADA) and Breakthrough T1D (formerly JDRF) have many resources. CIM or another group may be the exact answer to what your soul is seeking. Click here to find a Slipstream event near you.