“Courage starts with showing up and letting ourselves be seen.” -Brene Brown
A couple of years before my son was diagnosed with T1D, I stumbled upon Brene Brown‘s books, research, and Ted Talks. What I read resonated with me at work, home, parenting and with friends. But since my son was diagnosed with T1D a year ago, her writing has come to mean so much more to me.
Since his diagnosis, I’ve struggled with how much to share with people about our lives now and what caring for my son truly means. I’ve also struggled with how much to put on social media. I don’t know what to say to people when they ask, “How are you?” because they probably expect a one-word answer, not a monologue about medical technology, diabetes care and some serious sleep deprivation. And I have a hard time discerning who is asking because they truly want to know and who is just making small talk.
At the same time, I’ve felt the most real and calm at surprising times when I’ve shared all the ins-and-outs and ups-and-downs with people. Once, in the middle of a happy hour surrounded by 40 of my co-workers, a friend asked me “No truly, how are you?” I began tearing up as I slowly shared some of the weight of diabetes care-taking and my fears as a parent of a child with T1D. Another time I broke down and shared with my best friend how worried I was that I wasn’t enough for my son and wouldn’t be able to do this. And she spent her precious time building me back up and helping me feel more confident. There is something about the online diabetes community that provides opportunities for these moments of connection as well. However, it is mostly an anonymous form of support because most of the people online aren’t friends and family who live nearby. So, there is a disconnect between those who truly understand what I’m going through and the people I interact with every day.
“True belonging only happens when we present our authentic, imperfect self to the world.” – Brene Brown
This quote makes me think that we should all be sharing our fears and vulnerabilities within our natural support systems. It doesn’t mean there isn’t a place for the amazing online community of people ready to help, or a time when oversharing diabetes info and emotions isn’t appropriate, but there’s nothing quite as heartening as people we know and love taking an interest in and understanding our lives (and our children’s life) post-diagnosis.
So, I challenge myself and you, to share, show up, and allow yourselves to be vulnerable. Until we do this, the support we, and our kids, need won’t be there. People won’t realize that it’s needed because they don’t understand. And this disease will remain hidden in the shadows. I know that I want my son to come to see his TID as a source of strength and not as a secret or something to be ashamed of.
“If we can share our story with someone who responds with empathy and understanding, shame can’t survive. – Brene Brown
Plus there’s a bonus if we’re brave enough to do this — we just might share enough to save other people from misdiagnosis and DKA, because true stories and real vulnerability will be remembered more vividly than any facts or information campaign can ever be.
Read Dear Stranger by Stacey Obrecht.