Whose Diagnosis Is This Anyway? The Impact of Type 1 on Parents

There’s no room at the ER; It’s one of those high-volume moments, so we’re sitting on a gurney in the bustling hallway.  The doctor is talking in a calm voice, despite the swirling hubbub.  

“The good news,” she tells my nine-year-old son, as though about to pronounce the victory of a beloved team in the World Series, “is that you will be able to live a totally normal life.  Your mother is smart and educated, “ she nods at me and I fleetingly wonder how she can know such a thing. “She will help you.  You’ll be able to do anything you want.”  

Type 1 Diabetes is no longer the death sentence that it once was, far from it.  Sure, there was the life-saving discovery of insulin in 1921, but since that time -- and even since the days when I watched my father give daily injections -- there’s a dizzying array of technological “solutions” to the problem of managing diabetes, from a sizable number of insulin pumps to choose from; to continuous glucose monitoring, which provides 24/7 readings of blood sugar; to the widely anticipated “artificial pancreas” which will take some of the guesswork out of the equation of blood sugar management.  In the end, that means that, for folks diagnosed after 1979, they will likely live as long as their non-diabetic counterparts.  And the risk of complications -- all those scary conditions like blindness and limb loss and kidney failure -- while still possible, are significantly reduced.

But that sure doesn’t make it easy.  

As a parent of a newly-diagnosed kid with Type 1, it starts with just figuring it all out.  “It’s like drinking out of a fire hose,” another parent sympathized when my family began this unexpected journey.  And it is.  First you take a crash course in a whole new language, one peppered with technical jargon -- bolus and basal and ketones and insulin-to-carb ratio.  And then, while getting yourself up to speed, you have to manage the distress of hurting your child -- multiple times a day -- with shots and finger sticks and insertion sets, not to mention the indignity of watching every bite of food that he eats.  

It gets better.  It does.  You become fluent in the language.  Your child starts to adjust to the number of sticks he has to suffer each day.  You develop the savant-like skill of knowing the carb count of everything you see.  You adjust.  It’s your new normal.

Except that it’s not.

Underneath all of busy hum of diabetes management is the tremendous loss:  The loss of your beautiful, perfect, healthy child.  The loss of the idea that you have the power to protect that child from harm.  The loss of community -- despite everyone’s best intentions, you often find that they just don’t understand your experience, saying hurtful things about how it’s not such a bad diagnosis or chastising your little guy for wanting a piece of birthday cake like everyone else. 

The research shows that parents of kids with Type 1 have increasing anxiety over time.  It’s like a slowly dawning understanding:  Sure, our kids will lead normal lives, but with a tremendous burden, one that initially is often shouldered by us and one that often takes us a while to fully understand.  They feel the blood sugar swings in their bodies, but if they are young enough, we are the ones who shoulder the tasks.  We’re happy to do it -- more than happy.  But it tires us.  And then we wonder how the kids will manage it, this monumental, but invisible job, this exacting job that can wake you in the night, interrupt a quiet movie, demand your attention at the most inopportune moment.  So, we worry.  And that wears us out even more.  

As you learn the language of Type 1 and it becomes just another chore in your life, it’s essential to find support and community to help heal the monumental hurt and loss of the diagnosis itself.  Find your people.  Join a group.  Pick a knowledgable therapist.  Share your sense of loss, your longing for normalcy, your anger.  Breathe.  Cry.  

Speak with others in the crazy foreign language of Type 1.