Have you noticed that Type 1 Diabetes (T1D) incurs a fair amount of shame and blame towards the person living with the chronic illness?
Because it happens. Intentionally or unintentionally. Shame and blame has crept into our culture of feeling free to express any and all thoughts that enter one’s mind. Perhaps comments are meant as well meaning. Maybe the comments are born from frustration of watching a person grapple with such a heavy, burden-laden disease. In any case, there is no longer a polite censure using the age-old wisdom that if you do not have anything nice to say, not to say it at all.
The shame and blame towards those living with T1D is not limited to one core population segment. It’s not just thoughtless and insensitive SNL comedians, internet bloggers or 15-second fame seekers. It’s not just the nosy old lady that overhears you asking your daughter to tell you how many carbs on that package of goldfish crackers which prompts a stern lecture and an eye roll. It’s not just the person that sees your child testing their blood sugar and then asks if they have the ‘sugar’ because you, the parent, must have done something to cause it. No. It is bigger now. Doctors do it. Teachers do it. Caregivers do it. Even Grandparents do it. The shame and blame is so sneaky that it might not even be noticed.
On a recent trip to see a doctor, our oldest felt the zing through this comment, “Well, if you knew you were low or high, why didn’t you make a change to your bolus/basal rate?” The implied statement to our oldest was that she was the one who was at fault over her T1D numbers. Not that it could possibly have been only in that moment, after reviewing her blood sugars for the first time, that it was clear a change needed to be made. Only after an open conversation on the car ride home, did our daughter understand the intention - now she is able to make changes towards her own care as before, she wasn't ready.
This example opens up the need for further dialogue. One sided-conversations and off-hand remarks are powerful. Sharing multiple viewpoints and creating a give and take without judgement is needed.
Earlier that week, our youngest had a proctor say, “Don’t think that you should take a break just to take a break. You know what I mean? This test is a big deal.” The unintended result of this casual remark that suggested to our youngest daughter that T1D was not a big deal, only the test was. As a result, during the entire time of the test, no breaks were given/taken – not even the ones that were supposed to be given during test section changes. The result? She finished a full hour early and was nervous of highs and lows the entire time. Another conversation at home and it was discussed that perhaps the thought of the assigned proctor was to not delay the time for the test so that our daughter was impacted by her T1D.
The insensitivity of the comments can be shockingly bold. I recently met with a group of parents in which one told me her child’s teacher has been known to say, “I don’t think your child even wants to do well. She is always fiddling with her blood sugar meter while in class. It is very distracting to see.” I am confident that every child diagnosed with T1D would happily give this disease away in an effort to stop causing a distraction in the classroom. More importantly, why did it not occur the teacher to address the child’s needs? A one-minute conversation could have solved the situation. Perhaps there was worry about highs and lows, an upcoming A1c appointment or something as simple as the fear of a forgotten lunch.
Imagine that same child teetering through the day and then encountering her second adult in charge. The comments continue. I’ve heard stories about Para-pros asking children to hurry quickly through their blood sugar checks or sighing loudly when parents explain that the overnights were higher and their child may need to do an extra blood sugar check in the morning. The message is clear; do not bother me with your medical needs.
It is not always an outside influence either. While most of our families that live with T1D have encountered unkind remarks from extended family, the repetition to those remarks are most astonishing. Despite education, training and time, there are many family members that continue to believe that “if only your mom changed your diet, you would be cured” or “Do you think something you did during pregnancy caused it? Because your family is the only family we know. My kids are fine.”
My heart breaks most when Parents shame and blame. We are on the front line with our children and we know what it takes to stay healthy while living with Type 1 Diabetes. We know the pain and suffering from the endless hours of concentration, stress, worry. We know the endless physical steps that must occur.
I have been troubled over the casual parent conversations that often start with, “I am at my wit’s end! My teen is LYING and isn’t taking care of themselves” or “I’m so sick of it! My teen doesn’t care. They know they are non-compliant!”
That teen is not ‘just a teen’. That teen is a young person, struggling to develop physically and mentally. A teen is thinking not only of what needs to happen to survive the current moment at school, in their peer group, at an after school extracurricular or even at a job. A teen may look mature but brain development is only just starting maturation. Without invitation, they have been saddled with a heavy loaded backpack of T1D and expected to manage it in the same way a fully grown adult would. If they do not, we as parents, roll our eyes and speak words riddled with shame and blame. “Why did you not bolus? What do you not understand? How come you aren’t smart enough to do this? You have to be lying – you can’t forget!”.
It’s sad, isn’t it? Heartbreaking, really.
The solution is not easy. There is no magic fix. Our society has become numb to much of the world’s hardships. Yet, for each person that reads this, take a pause. Think about the Words that You Choose to speak and understand the Impact of Your Words will have on someone. Above all, speak with love and You Will Make A Difference.