I was diagnosed with type one diabetes in 1985. I was 14 years old and just six weeks into my freshman year at a boarding school about an hour and a half from home. I have a terrible memory in general, but I’ll never forget the day I was diagnosed because it divides my life into “before” and “after.” Before was good and after was bad, but 34 years later, as a 51-year-old woman, I can’t even remember the “before,” can’t imagine my life without diabetes. It almost seems like part of the transition from childhood to young adulthood, like mom no longer reading to me every night before bed or dad making circle shaped pancakes instead of unicorns or dolphins.
So much has changed since 1985, but I’m not talking about the multitude of changes with diabetes technology (closed-loop pumps, CGMs, insulin pens), I’m talking about social and emotional changes that have come about because of the internet. In 1985 the only person I knew with diabetes was my younger sister who’d been diagnosed six months before me when she was 10 years old and the difference in our ages felt vast.
When I returned to boarding school (mom tells me I insisted on going back even though as a parent I can’t imagine how or why they agreed), the only other person with diabetes was Lillian, the head nurse. I’m sure it was comforting for my parents to know there was a professional medical person on campus who understood the challenges of diabetes, but it was terrible for me. What 14-year-old wants to be associated with an older woman who was never seen without her white uniform? A woman who lectured me about “not using diabetes as an excuse” when I went to the infirmary to ask for a note to miss class because of a bad low blood sugar episode. It was bad enough that when I told people that I had diabetes they’d nod their heads in recognition and say, of yeah, my grandmother has that. It made me want to scream.
This was pre-internet so I had no access to the world beyond my front door. If there were other 14 year old girls like me struggling with diabetes, I wasn’t aware. I was desperate for role models who were young and active and pushing past any diabetes related restrictions. But the only media reference I had was the American Diabetes Association (ADA) magazine that somehow always featured an older, out of shape person on the cover with stories about complications, which only compounded my feelings of isolation. I was the only one at school who had to prick my finger, squeeze a drop of blood onto a test strip and wait 60 second for the result; the only one of my friends who drank diet coke and never ordered fries and a milkshake from the “Snack Shack” after study hall. There were no peers to ask for advice on managing low blood sugars during a field hockey game, no peers to commiserate about telling your date that you have a chronic illness and if you start acting funny to hand you a package of starbursts. It felt like I was the only person in the world with diabetes and it was incredibly lonely.
Social media changed all that. Anyone who has been diagnosed in the digital era knows they are not alone because all they have to do is log into Instagram, Twitter, Facebook or even just do a search on Google. Social media posts from and about people living with chronic illness make the invisible visible. “normalizing chronic illness”
Research Pros and Cons
Peer Support Through a Diabetes Social Media Community
“Insights gleaned from this research can be applied to a wider network of online communities and chronic diseases as a way to foster peer support. People who understand the lived experience, whether they are a caregiver or person living with the disease, are experts in their own disease management and often have valuable strategies of self-management to share with others. Some patients with chronic disease may feel isolated if they do not have others in their social circle who understand the nature of their condition on a deeper level, and online communities are a powerful tool to bridge the gap of peer support beyond their geographic confines.”
Research examining “peer support” in online communities is positive. What Are PWDs (People With Diabetes) Doing Online? A Netnographic Analysis
“Findings indicate that social media provides a significant source not only of moral support and camaraderie, but also critical education on thriving with diabetes. Importantly, we observed strong evidence of peer influence on patients’ therapy and diabetes technology purchasing decisions.”
Social Media in the Diabetes Community: a Novel Way to Assess Psychosocial Needs in People with Diabetes and Their Caregivers
“Participation in DOCs appears driven by a need for psychosocial support, unmet by providers and the healthcare system, as well as a sense of duty to provide it to others.”
Social media has produced a vast quantity of inspirational, admirable role models with diabetes. Ironically, I think the biggest downside of social media is the lack of representation of those of us who are less than perfect. Just like everything else on social media where everyone is beautiful and having so much more fun, pwd online are showing their best selves.
The fact that social media has been shown to negatively impact a person’s self esteem, increase anxiety levels, and spread health misinformation are important drawbacks that warrant their own separate conversation.
I don’t want to return to the days where the only visible pwd were Wilford Brinley types (no disrespect) but it would be helpful to have a little of both. To let those with A1cs on the higher end of the spectrum know that numbers/results have nothing to do with your value as a human being. I think in order to feel fully seen, we need to show our whole selves, our light and dark selves, our happy and sad moments because finding a community doesn’t need to require any kind of approval or entrance exam. We need to embrace pwd of all stripes; pwd who are managing with mdi and pwd who are the first in line for the latest technology.
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