A Mother’s Perspective: Realistic Goal Setting and Avoiding Stigma in T1D
The title of the article arrests my attention, compelling me to read further. The Numbers of Shame and Blame: How Stigma Affects Patients and Diabetes Management. I shudder as I read the results of a study by the diaTribe Foundation. “Diabetes stigma affects 76% of people living with T1D and 83% of parents raising a child with T1D.” The statistics are so high.
Stigma. The word itself sounds uncomfortable on my lips. Diabetes stigma means carrying a sense of disgrace or shame because of having T1D, an unpreventable auto-immune disease.
I continue reading. “The majority of respondents who believe T1D is associated with social stigma identified the top three drivers of diabetes stigma — a perception of failure of personal responsibility, a perception of being a burden on society, and a perception of having a character flaw.”
I cringe as I read these findings. Does my son feel like he’s a failure when his blood sugars don’t cooperate and do what he wants them to do? Maybe he does. I know as his parent and caregiver I feel like a failure when his A1c isn’t what I had hoped it would be. Does he feel like he’s a burden on society? On his school? On his family? Oh, I hope not. I can hardly even reread that last driver of stigma on the list. Does he feel like he has a character flaw simply because he has T1D? My heart rises up to my throat.
How can I help my son navigate living with T1D in such a way that he doesn’t fall prey to the shame and failure associated with disease stigma? Rereading the statistics, I pause and ask myself another question. How do I as his parent carry disease stigma? The survey tells me 83 percent of us parents raising a child with T1D are affected by it. Am I a part of that 83 percent? When his physician suggests we make some changes to achieve better outcomes, do my reactions model for my son my own feelings of failure, guilt, or shame?
Whether overtly stated or simply implied, we all have goals in mind for our child’s T1D management. While I never announced my goals as clearly as I would my New Year’s resolutions, my son and I both knew what they were.
- A1c at 7.0 or below
- Blood sugars between 80-150
- Not too many juices boxes in a day
Setting goals is important; it’s what keeps us moving forward as humans. During certain times of the year we’re especially focused on goal setting. Whether it’s January’s hopes for the new year, September’s back-to-school focus, or our birth month marking one more circuit around the sun, we can’t escape the human drive to set goals.
But in our best efforts to keep our child healthy and safe, how can we set reasonable goals that serve more as guard rails than leave us feeling stigmatized if the goals are left unmet?
Set realistic goals: It’s easy to slip from the hope and optimism of setting a new goal to feeling shame if those goals aren’t attained. Start small when setting new goals. Remember your child lives with this disease 24/7. Your eagerness to try a new approach to glucose management might feel like the addition of one more heavy weight placed on top of what your child is already carrying. Check in with your child. How does he feel about your goals? There’s a fine line between maintaining glucose control and contributing to diabetes burnout.
Hold your goals loosely: Beware of the trap of stigma when we don’t hit our goals. Commit to living in the no-shame zone. The statistics reveal that 83% of parents raising a child with T1D struggle with stigma, meaning we parents struggle more with shame than even our children with T1D do. The next time you find yourself stressing over an unmet goal you have for your child’s care, recognize that the 83% is you. And it’s me. Let’s break the power of stigma in our own lives so we don’t model it and pass it along to our children. Offer grace to yourself and your child if the goals go out the window for a period of time. You can always get back on track once this season is over, so don’t buy into the failure narrative. Be good to yourself and to your child.
Be aware of what you reward: When my son was young, I would often take him to buy a small toy or gift after his appointments with his endocrinologist. It was a few years before I realized that I only bought him a treat when his A1c was at a level that met or surpassed the goal I had in mind. What message was I sending to my son? That I only reward what makes me proud? That my pride in him was linked to his A1c? Even well-intentioned gestures can leave our children feeling shame when they don’t reach our goals. Instead of rewarding only those times when the numbers match our goals, why not celebrate our child’s hard work and the joy of sharing life together after every appointment?
Watch your words: Goals like “Let’s do better with blood sugar control next year” imply a judgment that the past year was less than stellar. Your child (or you) may receive this message as a judgment that they (or you) were less than stellar last year. Words like better, good, and bad, which we use all too frequently when talking about blood sugars, are qualitative and can leave our child feeling stigmatized. Blood sugars and A1c’s are just numbers that provide us valuable information from which to make future decisions. Being careful with our language can help protect our child from carrying a sense of stigma.
Remember above all, our goal isn’t really about reaching blood sugar goals. Our goal is to build a healthy lifelong relationship with our child based on respect, encouragement, and love.
Bonnie O’Neil’s debut book, Chronic Hope will be released on April 13, 2021. Through narrative and reflection, the book weaves a story of hope amidst the challenges of raising a child with T1D.