The Juicebox Podcast that posted on February 20, 2018 features Nicole, a young woman in her 30s diagnosed with T1D when she was 17. She’s living the life we all fear - one of a growing list of diabetes complications. She’s dealing with retinopathy, gastroparesis, nephropathy, and other secondary complications of diabetes.
Early in the 70-minute podcast, Nicole’s comment jumped out at me.
For the people that are running marathons and living well with diabetes, there’s also this group that aren’t living well with it. And I really want the community to acknowledge that and embrace it so we can help each other.
Seventeen-year old Nicole had difficulty adjusting to her diagnosis and “got stuck” in a 15-year period of denial and poor self-care. She understands and accepts the role she played in her current difficulties and definitely does not play the poor me victim role.
Later on during the podcast she references sites within the diabetes online community where the cool kids hangout. These sites are filled with success stories and obvious pride taken in few or no complications after long years of diabetes. She reminded the listeners that there are a large number of people like her.
Looking back on my case and thinking about Nicole, I can see that my T1D diagnosis at the age of 30, instead of 17, was a lucky bit of fate. I can see my 17-year old self falling into that same path Nicole fell into. I was lucky and Nicole’s story reminds me about that.
I’ve struggled in my time here at TuD with how to handle success in my diabetes treatments. I wanted, and still do, a place for me to post my successes, not just because of pride, but also because I wanted to shout from the hilltops something useful that I’ve discovered.
Always nagging around the edge of my joy of sharing some diabetes success, like a 24-hour CGM “no-hitter,” was the thought, “how does this appear to someone caught in the throes of diabetes despair and inaction?” Someone caught for extended periods in the hypo-hyper roller coaster, someone who spends little time in range. I think that people like Nicole would feel alienated and marginalized by my comments.
What can we do, together, to harbor the significant slice of our community who live on the dark side of diabetes? They need support, too, probably even more than people like me.
I’m hoping this topic receives some participation and comment. Listen to the podcast. I know it’s what we fear and wish to banish from our minds, but it will give you some insight and maybe even inspire something we could do here to make people like Nicole feel respected, valued, and welcome.