Double-Edge Diagnosis
Type 1 diabetes is a double-edged sword. For most of my life, the word diabetes would make me shudder. It would make me recall moments of anguish, fear, stress, and a tremendous weight that comes along with a chronic illness. The word diabetes also made me feel completely alone. I was diagnosed at 12-years-old. The fear of fitting in was always present, so I made the decision to avoid all conversation around my diagnosis until I was around 21 years old.
I was finishing up my undergraduate degree and I was feeling very anxious about my future. I felt my life was lacking purpose. At the time, I was working on a project concerned with the chemistry of glycans (or sugars). I was exhausted from multiple daily injections and fingerstick pokes, but I couldn’t afford to transition to something better, like an insulin pump or CGM. At the same time, I was also terrified to have to explain what those devices were to curious onlookers. I was very aware of the stigma around diabetes.
One day, I went to the washroom to give myself my secret lunchtime insulin dose and a lady with a kind face looked in my direction. My heart almost leaped out of my chest when she came up to me but then to my surprise she said, “you’re doing a great job.” No one had EVER responded to me taking an injection like that before. She explained to me that her late son also had T1D and that she wished a better support network would have been there for him when he needed it. To this day, I’m not sure who that lady was, but she changed the course of my life with five little words and a whole lot of compassion, so I made it my mission to do the same.
That evening, I went home and thought about the fact that I didn’t have a support network with whom to share my burden. Even my closest friends didn’t have a clue what living with diabetes was like. So, I made it my mission to find someone. Statistically, if 1% of the population has T1D, I would have been able to find someone if I talked to 100 people. This exercise was a great reminder that humans are very connected, and after speaking with only 12 people, I met someone else living with type 1 diabetes. Eventually, my networking led me to a group called I Challenge Diabetes (ICD). ICD has been an integral part of my growth. It's been a way for me to share the burden of such a heavy disease with people who just get it. It has also been very inspiring to meet others who are living confidently with T1D. It was because of this new support network that I decided to start a business to earn extra money so that I could afford a CGM. I also received support at an ICD leadership event, which helped me to secure insurance for my first insulin pump.
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When I got my Omnipod® System, I decided that the best way to break the stigma was to talk about diabetes first, that way you could set the tone for how you wanted to be treated. Suddenly, people were listening to me without judgement, and I felt power in that. I wanted to give my community the power to set the tone for themselves too, so that’s when my Instagram account @artinfusion97 began. Today, I create various device covers to transform people’s life-saving medical devices* into works of art that reflect their personalities. It has been so rewarding to see this, and to help fight stigma one cover at a time.
However, I felt like I could make a bigger difference. So, with the help of a supportive supervisor I decided to make the leap to researching T1D as well. I am now a PhD student at the University of Alberta, working under the direction of Dr. Patrick McDonald. I'm learning about how we can create better stem-cell derived β-cells for cell replacement therapy. Although it's terrifying to me that my entire life revolves around my disease, it is also incredibly rewarding to be able to talk about something that is so close to my heart.
My diabetes journey has been a rollercoaster of positive and negative emotions. Some days are filled with frustration, anger, and fear. While others are filled with perseverance, drive, and gratitude. T1D has connected me to a community of people with the kindest of hearts. I am so grateful to be a part of it. I also feel very proud to be a researcher for type 1 diabetes. This disease will always be difficult to manage, but if the work I do can help just one person’s life, that is an incredible accomplishment. Through the I Challenge network, I have met an incredible family of people who truly get it. Everybody deserves to feel beautiful; everybody deserves to feel supported; and everybody deserves to feel like somebody is listening. Today might be the day that you decide to reach out and make a new connection – I say do it!