There are very few secrets about my life with diabetes. When I was just seven years old, my family took an active role in diabetes advocacy. And a large part of that advocacy has involved telling our personal story. So, my story has been told – by me, by my mother, and even by folks I don’t know well – not only to individuals, but to media outlets, members of Congress, and pharmaceutical companies. My mother, Moira McCarthy, has written two books about raising a child with diabetes, which are in a many ways, the story of how she raised me. I even contributed to the teen book, expressing my point of view in the sidebars.
Although I’m now an adult with diabetes, my mother still travels the country sharing our story. For me, although I was a diabetes poster child for most of my life, it’s important to set limits on sharing. My mother and I have an excellent relationship and a good system in place, in other words, we have sharing rules. These rules may be helpful to anyone who advocates, or to parents in general who sometimes post things about their children in social media outlets that may make their children uncomfortable.
My mother must always ask my permission before sharing any part of my story.
I usually say yes, but it’s important for her to ask me before she shares, even if she is sure I’ll agree. Things that happen in my life are exactly that: things that happen in my life. Even when my mom posts on Facebook about something that happened, she always runs it by me first. I myself am an over-sharer, so I seldom say no. But I appreciate that she respects my privacy. And when I do say no, my mom respects me.
No hospital pictures, ever
This isn’t an issue that I see solely in the diabetes community, it’s everyone’s issue. While I’m sure that a photo of me with two IV’s in my arm, a heart monitor and tubes everywhere would make a statement, but I believe that verbally explaining what I went through is just as powerful (if not more powerful) than a picture. When someone is sick and in the hospital, they are vulnerable and unhappy. I don’t want to be exploited like that – especially not for the sake of advocacy.
Honesty is the best policy.
When we originally jumped into the diabetes advocacy world, my diabetes care was extremely well managed. When the lovely teen years came along and I began struggling, my mom and I both decided that we were going to always be honest about it, no matter who we were telling our story to. It is embarrassing for me sometimes to admit how irresponsible I was as a teenager, but it is a learning opportunity for others. I think that being truthful in our advocating makes families able to see that even if you struggle and burn out, you can come out of it and still live a happy, successful, long life.
I feel like my willingness to be honest and let my mom share honestly is one reason our story resonates. I mean, what would be the point of pretending it has all been a (carb-free) cake walk? The realness is what helps others know they can be okay even if they are struggling. It’s also what gets the decision makers to do things in our favor when it comes to research funding. If your child does not want you to share the full and honest story, it’s a sign they need privacy.
Sometimes, pushing is okay.
There were times when I would have preferred to sleep in instead of getting up to go to an 8 a.m. meeting in Boston, or hang out with my friends instead of speaking at an event on a Friday night, but after every meeting or event, I felt as though I really helped people with diabetes. I felt like I was making a difference.
In the end, it is always up to the child.
I know, I know, you care about helping your child and the world. But it’s the child’s story. If I had decided it was all too much, my mom would have stopped speaking and sharing our story. Because diabetes — and the story of my life with it – is mine and only mine.