Through the Looking Glass

When doctor becomes patient

Have you ever wondered if it helps to be a doctor when your child is sick?

Our oldest child, Noa, a sophomore in college, was recently diagnosed with Ulcerative Colitis, an autoimmune disease where the body attacks the colon, causing a range of constitutional symptoms along with severe abdominal pain and bloody diarrhea.

Noa was never a whiner – she’s a D1 athlete and varsity rower which means that she knows how to suffer – so we should have guessed that something was up when she started to complain over a year ago.

Your main problem, I would tell her, is that you don’t eat enough fiber.

That’s what you get when your parents are doctors, our children like to gripe.

Other kids get to stay home from school when they have a stomach ache, a headache or just “don’t feel well.” All ours get is a dubious look, a couple of Tylenol, and a helpful suggestion not to let the door hit you in the butt (these days, of course, they also get a rapid Covid test).

So when it comes to making an early diagnosis, I guess it doesn’t help to be a doctor.

Then one day, Noa helpfully texted us a picture of the toilet bowl after she had gone to the bathroom. Rachel and I gave each other a look. OK, the problem here was definitely more than a lack of fiber.

Of course, as is always the case, the timing was bad. Noa had a ticket to fly back to California in two days for the start of the school year. I got on the phone with a gastroenterologist colleague and friend, who agreed to see Noa the very next day.

That’s where it definitely helps to be a doctor, or at least to have one in the family.

The day after that she went for a procedure and I got a call directly from the endoscopy suite. “Of course we’ll wait for the pathology,” the doctor said, “but it’s Ulcerative Colitis. I’d be shocked if it were anything else.”

I appreciated my colleague’s bluntness. She could cut to the chase because she knew that I would understand. There were always other possibilities, but likely no surprises; we would check off the boxes, but this would be the diagnosis.

And she could tell me that, right off the cuff. No need to wait for the right time and the right place to properly deliver such a diagnosis to a patient, with all the emotional fallout and questions that naturally follow.

She could do that because there was no need to explain to us what it all meant.

Rachel and I knew, and she knew that we knew: there is no cure, but a range of treatments; the medicine has advanced since we were residents; Noa could live a normal life; in addition to the steroids that were the mainstay of treatment back then – with their devastating side effects – there are now new “biologics” that could selectively tamp down the immune system to keep the disease in check.

It was not our first experience with serious illness in a child.

Our fourth child, Georgia, got sick while we were on a family vacation in the Dominican Republic. She was only six weeks old and looked, at first, to have a simple cold. Then she started wheezing and breathing faster. Maybe bronchiolitis? Then she spiked a fever, which in a six-week old means a full workup, and there was no way that was happening in the DR.

By the time Rachel was able to fly her out, via a connecting flight on a tiny plane from Puerto Rico, Georgia had turned gray. An older woman on the plane asked if she could pray over her. Please do, Rachel, said, we need all the help we can get. They went straight from the airport to the Columbia ER and she was admitted to the pediatric ICU with presumed pneumonia.

But it wasn’t pneumonia.

The peds ER attending had noticed that the heart looked a little big on the x-ray. They repeated the study and indeed it was. Georgia would turn out to be in florid heart failure, with congenital anomalies requiring two surgeries – including major open heart surgery- before she turned one year old.

I had stayed behind with the other kids, waiting by the phone. I’ll never forget the call I got from Rachel early in the morning after the echocardiogram. The birds were awake but the kids were still asleep, and the horizon glowed at the edge of the sea like nothing could be wrong.

All she managed to say was, “It’s not going to be ok.”

At that moment it didn’t help to be a doctor at all.

As anyone with a sick child will tell you, it’s amazing what you get used to: long days and nights in the hospital; doctor appointments, tests, and specialists; procedures, complications, successes and setbacks; juggling the demands of caregiver with the demands of work and family.

That’s true for any parent of any sick child.

But for us with Georgia, as with Noa over a decade later, it felt uncanny to be on the other side of the looking glass: doctors who were patients who were doctors….

The hospital was the water we had swum in for years of our lives. The social and professional dynamics between the various staff – a confusing and undifferentiated stream of white coats to many patients – was utterly familiar to us.

Everything that was done we ourselves had done, often hundreds of times: rounding on patients early in the morning, being called for a problem in the middle of the night, delivering a diagnosis, an update, or a result.

Through all of that, it definitely helped to be a doctor, in terms of how we were treated and what we understood.

For better or for worse, by that point in our careers, the medical environment had come to feel like a second home. And when bad things happen, it always helps to feel at home.

There’s another thing, too, about the experience of illness, whether as the parent or the patient, that dovetails nicely with the practice of medicine.

Last week Noa had a disease flare, exacerbated by Covid, and ended up sick enough to be admitted to the hospital in Palo Alto. Rachel flew out to be with her. Over the course of her hospital stay, Noa’s California Gastroenterologist shared with her that he, too, had been diagnosed with Ulcerative Colitis as a college student.

Maybe it shouldn’t have mattered, but it did. Of course, you don’t need to have had a disease in order to treat it well. That kind of prerequisite would disqualify most doctors from treating most patients.

But when he gave her advice about how to manage her studies and her sport with the new burden of her disease, his words carried the weight of experience.

Doctors have a built-in mechanism to transform the experience of personal illness into something positive – for it to add empathy, understanding, and weight to their words in taking care of patients.

Much as we like to live in denial, the expected fate of every doctor is to end up as a patient, on the other side of the looking glass.

And while no one would choose that route to become a better doctor, it’s a consolation prize that’s inarguably good to have.

Dr. Bertie Bregman
Dr. Bertie Bregman
Full Stack Family Medicine is a newsletter about what it’s really like to practice medicine and run a medical practice in New York City.
This blog will be a mix of stories, advice and discussion – topics will diverge widely, but they will all share a point of view!