We are Niagara Health is a series of stories that celebrates the incredible people working and volunteering in our organization and how they make a difference in the lives of patients and coworkers every day.
Niagara Health volunteer John Whitehead with his June Callwood Outstanding Achievement Award for Voluntarism.
Fighting stigma associated with illness is often the domain of those who work in mental health and addictions.
But John Whitehead knows firsthand that people with other health conditions are also unfairly judged.
Take being diagnosed with Type 1 diabetes. Whitehead was nine when he learned he had the chronic condition affecting his body’s ability to regulate sugar levels in his blood.
Doctors told him to test his blood to help manage his illness, but “a test is something you pass or fail,” Whitehead says. That language evoked negative feelings, he recalls, and rather than lean into caring for himself, he avoided it altogether.
“People tend to judge you on your numbers. If you don’t check, you don’t know. And as long as I was feeling OK, it made life easier and there was no stigma,” Whitehead says. “I was the worst patient you could probably have. I went decades without checking levels. Then I had to change.”
That change was significant. It ultimately led to Whitehead receiving the prestigious June Callwood Outstanding Achievement Award for Voluntarism last month for his contributions to his community and the province. He was one of 14 people throughout Ontario to be recognized.
“John Whitehead is a champion for those living with diabetes,” reads the news release from the Ontario government announcing the award winners. “He has advocated for financial assistance for Type 1 diabetics in need of continuous glucose monitoring and speaks regularly with newly diagnosed children and their families at the Niagara Health Diabetes Education Centre.”
Whitehead calls the honour surreal.
“There are so many people there with such great stories and to be included in that is an honour, for sure,” he says.
“These are people who have the same issues you have. When they realize you understand exactly what they’re feeling, they open up a little more. You try to help to the best of your ability and hope some of it sinks in."
But his story is nothing short of remarkable, too.
His character arc from avoiding dealing with his diabetes to dismantling the stigma and becoming a powerful voice for others with the condition started about 10 years ago when he found himself with a new doctor and on the doorstep of Niagara Health’s Diabetes Education Centre, where he met Cheryl Ruzgys, a registered nurse and the centre’s Diabetes Nurse Educator. Ruzgys’s language around treatment and management was different than anything Whitehead heard before.
For starters, she encouraged him to check his blood rather than test it.
“That made all the difference to me,” he recalls. “The change still took a couple of years. After that, I’d check my blood 10 times a day.”
New-found diligence and purpose
Even with his new-found diligence, Whitehead’s blood sugar levels remained far from ideal. He got an insulin pump and then did a trial with a continuous glucose monitor. The continuous glucose monitor had the greatest impact on his health, but with no coverage by the province or private insurance for the tool, the trial became trying.
“After one week, it made me cry. I couldn’t afford it and work wouldn’t cover it. As I’d take it off, I’d cry,” he recalls. “I had a second trial and I knew if I put it on, I’d never want to take it off.”
Whitehead started lobbying to get insurance coverage through his employer. He eventually succeeded and continued the fight for others. No small victory, the province announced in March 2022 that it would cover continuous glucose monitors for certain high-risk patients with Type 1 diabetes.
He also started to get involved in online diabetes groups, learning from others and sharing his experiences.
At Niagara Health, Ruzgys and Whitehead created a volunteer role for him. For the past several years, Whitehead has met with patients with Type 1 diabetes who struggle with stigma and their own care.
Sometimes he’ll meet them for coffee, sometimes a meal, where the conversation often turns to how certain foods affect them and how to time their insulin dosages.
“These are people who have the same issues you have,” Whitehead says. “When they realize you understand exactly what they’re feeling, they open up a little more. You try to help to the best of your ability and hope some of it sinks in. If they can just do a little bit more and gain that knowledge, they’re farther ahead than they were yesterday.
“I wish I would have had that help 20 or 30 years prior.”
Ruzgys, who now considers Whitehead a friend, recalls how a skeptical patient transformed into a spokesperson for others.
“He won’t stop until everyone with Type 1 has access to this life-saving technology,” she says about the continuous glucose monitors.
“He has his way of connecting with other patients, sharing his stories and using his brand of encouragement for people who are struggling with Type 1,” Ruzgys adds. “John always comes in with a smile knowing he has the best control one can achieve using his continuous glucose monitor with an automated insulin pump. Not only did he listen all those years ago, he learned in a way that will help others for years to come.”
His only regret, he says, is that he didn’t start sooner.
“I never saw myself doing any of this, but it was a snowball effect,” Whitehead says. “You do one thing and you keep moving forward.”