NPR logo

What Happens When You Have A Disease Doctors Can't Diagnose?

  • Download
  • <iframe src="https://www.npr.org/player/embed/514122487/514385926" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
What Happens When You Have A Disease Doctors Can't Diagnose?

What Happens When You Have A Disease Doctors Can't Diagnose?

  • Download
  • <iframe src="https://www.npr.org/player/embed/514122487/514385926" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript

GUY RAZ, HOST:

It's the TED Radio Hour from NPR. I'm Guy Raz. And on the show today, Getting Better.

(SOUNDBITE OF MUSIC)

RAZ: Jen, can you hear me? It's Guy Raz.

JENNIFER BREA: Yeah.

RAZ: How are you?

BREA: I've been getting slowly better over the last five years, so...

RAZ: This is Jennifer Brea. And by better, she means a bit healthier. Jen's a filmmaker now, but seven years ago, before everything about her life changed forever, she was a grad student at Harvard.

BREA: It was sort of my temple and my home. And I thought that that's what I would do for the rest of my life, that I would be a professor.

RAZ: And everything seemed to be falling into its right place.

BREA: I was with my boyfriend at the time - later my fiance, now my husband, Omar.

RAZ: Omar and Jen loved to hike and camp and travel all over the world, which is how they ended up trekking in Kenya. But a couple days into that trip, Omar caught a bug.

BREA: He got really sick, and he was throwing up the whole time and had really high fever.

RAZ: He eventually recovered. But as soon as they got back, it was Jen's turn. She got really sick.

BREA: And I had a fever for 10 days that, at its highest, was 104.7 degrees.

RAZ: Wow. Did you go to the doctor at that point?

BREA: I didn't go to the doctor because usually when you have a fever, it's viral and they just tell you to go back home and drink chicken soup. And I just stayed home, and I thought I would just get better like you always do.

RAZ: And at first, it seemed to work. After those 10 days, her fever broke. But the next day, she started to feel really dizzy.

BREA: I could not walk to the bathroom without gripping the walls.

RAZ: And from that point on, Jen started to get sick all the time.

BREA: I was getting some type of infection almost every month. That's sort of when everything started to change.

RAZ: Because even when she would recover from the infections, she never felt like she did before she got sick. She was always tired. Her muscles hurt. Even walking became painful.

BREA: I started having numbness on the right side of my face that then started to become, you know, the right side of my body. And then I was at a restaurant with some friends and after dinner when the check came, I couldn't sign my name. Like, I was staring at the check and I didn't know how to tell my hand how to draw the letter J.

(SOUNDBITE OF MUSIC)

RAZ: So throughout that first year, you were going to doctors basically to say - hey, something weird is going on.

BREA: Exactly. I kept trying to find help. I kept going to doctors. And first, it was sort of saying - well, you probably just have an inner ear infection or you're probably just a little tired. And then, it started to become something more like maybe you have some anxiety and you're probably depressed.

RAZ: Jen went to every specialist she could find, from infectious disease doctors to endocrinologists to cardiologists and, finally, to a neurologist who said she might have something called conversion disorder.

BREA: That my symptoms are being caused by a distant trauma that I could not remember. And I pushed him on this a little bit because I thought, OK, you're trying to explain neurological symptoms, but this all began with a really high fever. And I've had all these infections and - are those also psychosomatic? And he said yes, everything that you've been experiencing is psychosomatic - that the symptoms are real but that they have no biological cause.

RAZ: How did you feel when you heard that?

BREA: I worry that I can't say on radio (laughter). I mean, my first reaction was that doesn't make any sense. It was the first time that anyone had ever doubted my own story, my own witness and account of my body. And then my second reaction was - well, if I really have a psychological disorder, maybe one of the symptoms of the psychological disorder is that I would have a hard time accepting it. And so I thought I just wanted to get better. I just wanted to get back to my life. And anything that was going to help me get better, I would accept.

(SOUNDBITE OF MUSIC)

RAZ: So that afternoon, Jen walked out of her neurologist's office determined to get better. The doctors she'd been seeing were saying, just try exercising. So she decided to fight her physical pain and walk home.

BREA: And as soon as I walked through the door, I collapsed. And I couldn't get up for four months. That was kind of this big gating moment for me because up until that point, I would get sick and then I would get better. But I've never been the same since that walk home. I've never been any better than I was that day.

RAZ: There's a pretty good chance that you might know somebody or have heard of somebody like Jen Brea. Her story isn't all that uncommon because there are still so many unanswered questions in medicine - diseases we don't understand, others we can't cure - at least not yet.

So today on the show, we're going to explore some of the ideas out there about Getting Better, how doctors, researchers and even patients are trying to change medicine to find better answers.

BREA: What I was grappling with felt so big and so terrifying that I wouldn't survive it. The fact that other people had gone through that and had survived gave me hope that I would be able to find a way.

Copyright © 2017 NPR. All rights reserved. Visit our website terms of use and permissions pages at www.npr.org for further information.

NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.