Wednesday, July 18, 2012

Broken

[Not to dwell on diabetes-related sadness, but I haven't been able to shake this feeling and must write about it. I don't know how I'll ever be able to handle these experiences without feeling so much, though I'm not sure that I even want to have that ability.]

I was only a week into my training to become a Pediatric Endocrinologist when the call came from the children's emergency room.
We have an 8 year old little girl with no past medical history who presents with polyuria, polydipsia, weight loss, and an elevated blood sugar.
My heart dropped anchor into my stomach. The diagnosis is irrefutable, but I found myself making excuses for her. Maybe her blood sugar is elevated because she just had a whole carton of juice right before they tested. Maybe this is a temporary, false reaction.
But I knew this wasn't true. I whispered these impossible excuses over and over, and to protect whom? Her? Her family? Myself?
I walked from my office to the emergency room, each step becoming harder. I could feel my eyes welling up. Why? This isn't a death sentence. This is manageable. I've had to do it every day since I was her age, and I'm okay. Right?
And of course, she was the most adorable little girl. Her high blood sugar had been caught early thanks to a family member with diabetes who recognized the symptoms and tested her with a home meter. Her mother and her grandfather were sitting with her on the stark ER stretcher with faces equally stark, though she was still shrouded in naivety and ignorance and thus happy, cheerful.

But her family knew what I was going to tell them before the words could come out of my mouth.
And this relieved me.
I thought the blow of the words would be lessened by their knowledge of the disease. But as I laid out the facts of the matter as gingerly as I knew how, I realized I was wrong.  How could any parent's reaction to this news ever be buffered by anything at all?
I could feel the world shifting under this girl's mother. Her face was a million emotions that swirled into blank stupor.  It was as if her brain, to protect her body from this immense trauma, had simply gone unconscious. I couldn't stop myself from wondering what was going through her head; were they the same thoughts I was having? Was she starting to mourn the end of her daughter's innocent childhood, like I was? Did she even know enough about what was to come to realize the severity of this diagnosis? The impact this will have on every hour of every day, for the rest of her life?

As physicians, we cannot mention these things right off the bat, as it does more harm than good. You present the most simple picture, and the rest unravels over the ensuing hours, days, months, years. It's far too overwhelming in the beginning and would not be understood, anyway.

But I know. I know every tear over needles and lancets, every fit over not wanting to count every damn carbohydrate anymore, every dreaded appointment, every fear. And even though I'm convinced that this disease has shaped me into a better person than I ever would have become otherwise, not a day goes by that I don't wish things could have been different. I know what this family is about to go through and it makes me feel like I'm free-falling into nothing. I can help with their insulin doses and their meal planning, but I cannot cure the disease or the emotions that come barreling with it.

I finish explaining the very basics, and ask them if they have any questions, though I know they are too stunned to ask any right now. But the little girl says,
"Can we get someone to fix this TV? It's broken, and I really want it fixed!"

Yes. And we'll add your pancreas, your mother's heart, and my strength to that list of items that are broken and need fixing.

6 comments:

  1. I was that parent, not once but twice. And I will say that it does get a bit easier with knowledge. When Shannon Beth was diagnosed at 5 we caught it early because my brother had just been diagnosed, but I didn't know much beyond the symptoms. I was devastated. Eight years later when Jacob was diagnosed, again early because we knew the symptoms, I was able to handle it much better. So much so that even though the ER doctors said they thought it might not be diabetes because his blood sugar had come down some on its own, I insisted that it was. Unfortunately I was right. For me, I wish I had someone when Shannon Beth was first diagnosed to fully prepare me for what was to come. She only spent one night in the hospital and that was spent doing a crash course on diabetes care. I wish I had someone to tell me that diabetes was not a death sentence. Though I knew that in my heart, I didn't have any examples to look at. While it must be incredibly hard for you to deal with the emotions when you handle a newly diagnosed diabetic you need to show them that there is a future as a diabetic. That they can live a long, happy, productive life even though they have diabetes. Yes, it sucks. But I tell my kids that they can still do everything they want to do, it just might take a bit more work. That's the only thing that keeps me going.

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  2. Thank you for sharing Shara, as much as chronic diseases are in the news right now, I don't think we ever hear from this perspective.

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  3. Great post Shara! Very interesting hearing the provider perspective on having to give such terrible news.

    John Parkinson

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  4. Beautiful and heart-breaking, all at once.

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  5. Although this is not a new post, it still brought tears to my eyes. As parents, we wish we could take on these awful things and protect our children from them.

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  6. I honestly never considered that an endocrinologist would find breaking the news sad! This is heartbreaking.

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