Pregnancy with type 1 diabetes: Who actually manages my diabetes?

Pregnancy with type 1 diabetes comes with a lot of doctors.

I see my OB/GYN. I see a maternal-fetal medicine specialist. I see my endocrinologist.

There are weeks when it feels like I am constantly at a doctor's appointment. I'm not actually there every day, but sometimes it certainly feels that way.

You might assume that having this many medical professionals involved means there are type 1 diabetes experts everywhere.

That hasn't necessarily been my experience.

My Endocrinologist Has It

I am incredibly fortunate to have an endocrinologist who is highly involved in my care.

He knows me. He knows my diabetes. He knows how my body responds to insulin, and during pregnancy, he is essentially on standby when I need him.

That relationship gives me an enormous amount of comfort.

It also means I am very clear with the other members of my medical team about who is managing my type 1 diabetes.

My endo has it.

I find myself saying some version of that pretty regularly.

My endocrinologist is actively managing my diabetes. He is watching my numbers. He is available when I need adjustments. He understands my pump, my Dexcom and how my insulin needs are changing throughout pregnancy.

I don't need every provider I see to manage that piece of my care.

In fact, I'd rather they didn't.

I want my OB/GYN focused on my pregnancy and delivery. I want my maternal-fetal medicine physician focused on my baby's development and the additional monitoring that comes with a higher-risk pregnancy.

And I want the physician who specializes in my diabetes managing my diabetes.

That seems straightforward.

In practice, it can be a little more complicated.

The Strange Part

There is an odd element to being pregnant with type 1 diabetes that I don't think I fully appreciated until I experienced it.

My type 1 diabetes is one of the primary reasons my pregnancy requires additional monitoring and specialized care.

Yet some of the medical professionals I encounter throughout that process seem to know relatively little about the day-to-day realities of actually managing type 1 diabetes.

That creates an unusual dynamic.

I'm sitting in a medical office partly because I have type 1 diabetes, while simultaneously reassuring the provider that my diabetes is being appropriately managed by someone else.

Sometimes questions or recommendations come up that don't really align with how I manage my diabetes. Sometimes I find myself explaining technology or why I would handle a particular blood sugar differently.

And often, I come back to the same answer:

My endocrinologist is on board. He's managing it.

I don't say that dismissively. Quite the opposite.

I have tremendous respect for specialized expertise, which is exactly why I want each member of my medical team focused on the area they know best.

I Know My Diabetes, Too

There is another person on this medical team whose expertise matters.

Me.

I have lived with type 1 diabetes for most of my life.

I know my pump. I know my Dexcom. I know how my body responds to insulin. I know what happens to my blood sugar when I eat, exercise, sleep, get sick or become stressed.

I know that a Dexcom arrow isn't just an arrow. Its meaning depends on where my blood sugar is, how quickly it's moving, what I ate, when I ate it, how much insulin I took and how much insulin is still working.

Those are calculations I make all day, every day.

None of that makes me a physician.

But it does make me an expert in living with my own type 1 diabetes.

I think that distinction is important.

There are times in healthcare when the person with the medical degree unquestionably knows more than I do.

There are also times when I have information about my own body that can't be learned from a chart.

Good care requires room for both.

More Doctors Doesn't Automatically Mean More Expertise

Before experiencing pregnancy with type 1 diabetes, I think I assumed that "high-risk pregnancy" meant there would be specialists who understood every aspect of the conditions creating that risk.

I've learned that's not really how medicine works.

Specialists specialize.

And that's okay.

I don't expect my endocrinologist to deliver my baby. I don't expect my OB/GYN to know every nuance of insulin pump management.

The problem isn't that every provider isn't an expert in type 1 diabetes.

The challenge comes when someone who isn't an expert tries to manage something that is already being managed by someone who is.

For me, the best approach has been surprisingly simple: make it clear who owns what.

My endocrinologist manages my diabetes.

My OB/GYN manages my pregnancy and delivery.

My maternal-fetal medicine physician provides the additional monitoring and expertise needed for my pregnancy and baby's development.

And I remain involved in every part of it.

Trusting the Right People

Pregnancy with type 1 diabetes requires an incredible amount of trust.

I have to trust my doctors.

I have to trust the technology attached to my body.

And I have to trust myself.

Having an endocrinologist who knows me well and is accessible when I need him has made an enormous difference through all three of my pregnancies.

It doesn't eliminate the work.

I'm still the one making diabetes decisions throughout the day. I'm still watching the numbers, pre-bolusing, correcting, treating lows, adjusting and troubleshooting while everything else in life continues around me.

But I know I have someone to call who understands exactly what we're trying to accomplish.

That matters.

The Patient Belongs on the Team

Pregnancy has reinforced something for me that extends well beyond pregnancy.

Good medical care doesn't require one person to know everything.

It requires people to know what they know, recognize what they don't, and respect the expertise of the other people involved.

That includes the patient.

People with type 1 diabetes make decisions about their condition every hour of every day. By the time we walk into a doctor's office, we bring an enormous amount of information with us that isn't necessarily contained in our medical records.

We know what has worked.

We know what hasn't.

We know when something feels different.

And sometimes we know that the best thing another provider can do for our diabetes is trust the specialist who is already managing it—and trust us enough to listen.

Pregnancy with type 1 diabetes certainly requires more medical care.

But I've learned that more isn't necessarily what makes me feel safest.

It's knowing that the right person is managing the right thing.

And knowing that somewhere in the middle of all of those doctors, appointments, numbers and decisions, there is still room for me to be the expert on living in my own body.