The Importance of the Diabetes Community
Scott Benner
This is the second in a series of five pieces that I wrote for Omnipod's Suite D blog. Part three is live on Suite D now and will arrive here next month.
It's a paid freelance gig, you can read my disclaimer about that on part one of the series (link below),
Part 2: Finding Support
My bedroom was pitch black and the house completely silent. It was well after three in the morning and I hadn’t been to sleep. My belief that my daughter Arden’s blood sugar would rise to a safe level was tenuous that evening so I was watching over her even more than usual.
When I fall asleep the likelihood of me waking up when I need to is slim. So on nights like this one I tend to just stay up. This night happened before we became continuous glucose monitor users and I would periodically walk from my room to hers to check her blood sugar. Each time I climbed back into bed, I became a little less certain that I could stay awake. Because my wife was sleeping I was trying to stay still, my eyes were sore from a long day that was getting longer. I had to stop watching television on my laptop, because it felt like there was sand in my eyes. I was exhausted, bleary-eyed and pretty sure that I was about to nod off – so I opened my Twitter app and, perhaps out of desperation to stay awake or maybe in an effort to not fall apart, I told who ever may be out there what was happening.
A few silent minutes later, I received a response from a woman whom I’d never met. She told me that she was also sitting up watching a blood sugar that she didn’t quite trust. That was it really. We didn’t talk much or offer one another solace. It was sort of a, “I’m here doing this thing and it’s getting the best of me.” And a reply that basically said, “Me too.”
I closed my laptop, the abyss of the night enveloped me and I began to sob tears of relief.
I was buoyed by the notion that there was another person in the world that was doing what I was and suddenly everything felt better. I learned that night that it isn’t the diabetes that made me feel alone and it wasn’t the darkness that caused me to want to reach out; I was being oppressed by the feeling that no one understood our life.
And just like that, with a tweet, I found sameness with someone that I couldn’t see, hear or touch. My diabetes community expanded. No longer would I have to wait for a JDRF walk to talk to a person who understood my life. Supportive glances, understanding words and the satiation that sameness brought, they were all I needed to feel recharged. Support came that night, but not in the form of mentorship or advice. This wasn’t a plan for counting carbs or talks of how to best prep a pump site. It was simple, beautiful and kind. A brief encounter with a person who had walked in my shoes and reassured me that I was not alone.
I’ve learned diabetes jargon, gathered information about insulin pumps, medications and ways of handling type 1 diabetes from the diabetes community. They’ve taught me with their openness to be comfortable with others being my rock when I can’t do it for myself. With the help of these wonderful new friends I began to see a light at the end of a tunnel, I was beginning to believe that it was possible for us to find our way back to feeling normal.
Read 'The Importance of the Diabetes Community Series
Part 1: How it Saved Our Family
Part 2: Currently Reading
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
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