Another day of diabetes discussion! The prompt for today is: Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another. And sometimes the way the doctor talks to you can leave you feeling like you’re at fault. Or maybe you have a fantastic healthcare team, but have experienced blame and judgment from someone else in your life – friend, loved one, complete stranger. Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had. Now, the game part. Let’s turn this around. If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself? Let’s help teach people how to support us, rather than blame us!
Diabetes is somewhat unique in that a tremendous amount of care is solely in the hands of the patient. We make so many decisions each day that impact the quality of our blood sugar management. As important as the medical advice we receive is, in the end, it’s up to the PWD to implement the advice in their daily choices. Guilt and shame are part and parcel of living life with diabetes.
Happily, I haven’t had many “diabetes police” type folks in my life. Nobody has questioned or challenged my food choices or other decisions with any regularity. But, one specific instance jumped out at me when I read this prompt…
After having a very healthy and happy pregnancy with Sienna, I felt less stress with my second high risk pregnancy. I was surprised when Mateo had to be admitted to the NICU with low blood sugar shortly after his birth. At 9 pounds, 1 ounce, he was automatically dubbed a “big baby” too. When we went to see him in the NICU, I heard the first of the many mentions of Mateo being a “diabetic baby.” He didn’t have diabetes, of course, they meant that his mother was diabetic and therefore whatever conditions he was suffering were because of his mother’s disease. Or, what I heard and felt deep in my heart was: “His mother’s poor blood sugar management while pregnant caused whatever is wrong with him now.” The guilt was severe.
The thing is, my control was very good throughout the pregnancy. But, I was a few years older and a bit more relaxed than the first time around, plus the fact that Teo was induced a few days later than Sienna (they were both due on January 8th!) all meant that he was bigger and his blood sugar low upon birth. He ended up being in the NICU for a full week while they ran tests because his oxygen level had gone down a couple times while he was being monitored. By down, I mean it dropped to 87 to 89% range, while they wanted to see him consistently in the 90s. They were concerned that his lungs or heart were underdeveloped, because of “maternal diabetes”. In the end, he was completely fine and I had to challenge the doctor to give me a diagnosis and state that I would sign him out against medical device, if necessary.
The following week, at his pediatricians’ office, I talked to a doctor about our experience. He noted that Teo likely suffered from “the diabetic baby stigma.” Ah, that made so much sense. They were sure that something more serious was wrong because he was a “diabetic baby” and acted accordingly.
If I could rewrite the script for the doctors and nurses in the NICU that week, I’d have them say: “We’re going to run some tests to make sure Mateo’s heart and lungs are fully developed and strong because his oxygen level has gone down a couple of times. This can be an issue when a baby’s mother had pre-existing diabetes. We know you took great care of yourself throughout your pregnancy and we don’t want you to feel badly. These things happen sometimes and we’re going to take all precautions to make sure your son is healthy and whole before you go home. What do you think?”
That message would have made all the difference during those challenging first days. I’m grateful for the amazing medical care we enjoyed and know the doctors and nurses were well intended. They didn’t realize that, to a mother with diabetes, overhearing references to their son as a “diabetic baby” would cut so deep.