Part 5 of the TED Radio Hour episode Getting Better
About Jennifer Brea's TED Talk
Doctors told Jennifer Brea that her symptoms were psychosomatic, so she filmed herself and turned to the Internet for guidance. She describes how her online community helped her find the right diagnosis.
About Jennifer Brea
Jennifer Brea is a filmmaker and activist. Previously, she was a freelance journalist in China and East and Southern Africa. While she was pursuing her PhD at Harvard, she fell ill and was eventually diagnosed with myalgic encephalomyelitis (ME), or Chronic Fatigue Syndrome. Her documentary Unrest, which follows her challenges with ME, premiered at the 2017 Sundance Film Festival.
GUY RAZ, HOST:
Earlier in the show, we heard from Jennifer Brea who caught a virus on a trip to Kenya and came down with a really high fever.
JENNIFER BREA: At its highest was 104.7 degrees.
RAZ: But Jen never got better. She started getting strange symptoms. She would feel dizzy and numb. And she'd have moments when she couldn't even speak or write. She went from doing 20-mile bike rides to collapsing after just a short walk.
BREA: And it just kind of got worse and worse and worse.
RAZ: Jen went to all kinds of specialists who didn't know what was wrong with her. And then one of them came up with a diagnosis, conversion disorder.
BREA: He told me, everything that you've been experiencing is psychosomatic, that the symptoms are real but that they have no biological cause.
RAZ: That diagnosis, the idea that her symptoms were all in her head, left Jen feeling even more helpless. And then on top of that, she would later find out that her diagnosis, conversion disorder, used to be called hysteria. Jennifer Brea picks up the story from the TED stage.
(SOUNDBITE OF TED TALK)
BREA: When my doctor diagnosed me with conversion disorder, he was invoking a lineage of ideas about women's bodies that are over 2,500 years old. The Roman physician Galen thought that hysteria was caused by sexual deprivation in particularly passionate women. The Greeks thought that the uterus would literally dry up and wander around the body in search of moisture, pressing on internal organs - yes (laughter) - causing symptoms from extreme emotions to dizziness then paralysis.
These ideas went largely unchanged for several millennia, until the 1880s when neurologists tried to modernize the theory of hysteria. Sigmund Freud developed a theory that the unconscious mind could produce physical symptoms when dealing with memories or emotions too painful for the conscious mind to handle. It converted these emotions into physical symptoms. This meant that men can now get hysteria. But of course, women were still the most susceptible.
Why has this idea had such staying power? I do think it has to do with sexism. But I also think that, fundamentally, doctors want to help. They want to know the answer. And this category allows doctors to treat what would otherwise be untreatable, to explain illnesses that have no explanation. The problem is that this can cause real harm. In the 1950s, a psychiatrist named Eliot Slater studied a cohort at 85 patients who had been diagnosed with hysteria. Nine years later, 12 of them were dead and 30 had become disabled. Many had undiagnosed conditions, like multiple sclerosis, epilepsy, brain tumors.
In 1980 hysteria was officially renamed conversion disorder. When my neurologist gave me that diagnosis in 2012, he was echoing Freud's words verbatim. The problem with the theory of hysteria, or psychogenic illness, is that it can never be proven. It is, by definition, the absence of evidence.
RAZ: Jen, of course, didn't believe she had conversion disorder. But she had trouble convincing doctors that her symptoms were serious.
BREA: I had this problem of when I was well enough to go to a doctor, I would look pretty normal. And then when I was experiencing my symptoms, I would never be able to go in.
RAZ: So she decided to start filming herself at home with her iPhone.
(SOUNDBITE OF VIDEO)
BREA: I don't think I can get up off the couch.
And when I was able to bring in these videos...
(SOUNDBITE OF VIDEO)
BREA: The right side of my face feels numb. I fell like my brain is misfiring.
It just - it changed the conversation when they could really see what it was like.
(SOUNDBITE OF VIDEO)
BREA: I figure it's good to just keep documenting. OK. Turn off the light.
RAZ: But even then, her doctors couldn't make sense of her symptoms.
BREA: So, like, in the doctor's office, there was all of these strange symptoms that had no pattern, that they couldn't understand or describe or categorize or name.
RAZ: So Jen did something that a lot of doctors don't particularly like.
BREA: I think one of the most annoying things for doctors that a patient can do is go on the internet and Google their symptoms.
BREA: And even though oftentimes I was Googling PubMed and Nature and Science and bringing them into my doctors, there was the sense that, you know, the internet is really unreliable, which it is. It's like a Wild West. And you'll find all kinds of information.
RAZ: But along with those studies, Jen found something else online.
BREA: There are literally thousands of people that all have the same pattern of symptoms.
RAZ: The same symptoms Jen's doctors couldn't make sense of.
BREA: This community of people who all had ME, myalgic encephalomyelitis.
RAZ: Myalgic encephalomyelitis, a disease that seemed to fit with the symptoms Jen was experiencing - so through that online community, Jen connected with ME experts across the country.
BREA: I found a doctor in Boston at Mass General, a doctor in Miami, in New York, a doctor in Nevada and a doctor in California. So I've actually been (laughter) diagnosed five times with ME.
RAZ: Why is it so difficult to diagnose?
BREA: It's difficult to diagnose because it's not really a part of the medical school curricula. So at most medical schools, you're not required to learn about the symptoms and the pathophysiology of the disease. So one doctor that I saw in Miami - when she was a professor in immunology, she had to sort of teach medical students during their lunch hour because it wasn't a part of the curriculum.
(SOUNDBITE OF TED TALK)
BREA: Myalgic encephalomyelitis - you've probably heard it called chronic fatigue syndrome. The key symptom we all share is that whenever we exert ourselves, physically, mentally, we pay and we pay hard. If my husband goes for a run, he might be sore for a couple of days. If I try to walk half a block, I might be bedridden for a week. It is the perfect custom prison. I know ballet dancers who can't dance, accountants who can't add, medical students who never became doctors. It doesn't matter what you once were. You can't do it any more. It's estimated that about 15 to 30 million people around the world have this disease. In the U.S., where I'm from, it's about 1 million people. That makes it roughly twice as common as multiple sclerosis.
Patients can live for decades with the physical function of someone with congestive heart failure. Twenty-five percent of us are homebound or bedridden and 75 to 85 percent of us can't even work part time. How could a disease this common and this devastating have been forgotten by medicine? All around the world, ME is one of the least-funded diseases. So in the U.S., we spend each year roughly $2,500 per AIDS patient, $250 per MS patient and just $5 per year per ME patient.
(SOUNDBITE OF MUSIC)
RAZ: It feels like ME patients face this kind of dilemma. Because it's sort of mysterious, no one is funding research into it. But then the only way to figure out what the mystery is is to fund it, right?
BREA: Yeah. It's this sort of really weird situation where people say, well, we don't know anything about it yet. And I - whenever anyone says that to me, I kind of feel like I'm standing next to this, like, giant rock and everyone's like, well, we don't know what's underneath that rock. Like, what could possibly be under that? And like, lift it up. Just, like, lift it up and look, you know? You can't answer the questions that you don't ask. You can't understand what you don't study. You can't find what you're not looking for.
RAZ: Yeah. And I wonder if, like, on a more personal level, you were - like, you were going to this process constantly where you were asking yourself, like, you know, what's wrong with me? What's happening to me? And then finding this community of people online probably made you feel like you weren't the only one asking those questions.
BREA: You know, it's a funny thing because being able to connect to people who are sharing your experience is profound. I thought I had a rare disease. For those first two years, I thought maybe I'm dying. No one could tell me what my prognosis was. No one could tell me what this was going to be like. Even if in that moment 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.
RAZ: What else - what else gives you hope?
BREA: I think what is hard to sort of see from the outside is that humans are really adaptable, and I've kind of grown into this. And so on the one hand, every day I try to live the life that I have as well as I possibly can. I'm also fighting for a better life at the same time. And I know that there are so many drugs I have never tried. I know that there are so many experiments that have never been run. And so I believe that if we just started trying to answer these basic questions that we could find treatments and explanations for this disease within a matter of years. So I think that I could get a lot better and I think that I could get a lot better while I'm still young, and that's really what I'm fighting for every day.
RAZ: That's Jennifer Brea. You can see her entire talk at ted.com. And by the way, those iPhone videos she took of herself at home, those actually inspired her to make a documentary about chronic fatigue syndrome. It's done mostly from her bedside at home. It's called "Unrest," and it premiered earlier this year at Sundance.
(SOUNDBITE OF SONG, "DOCTOR, DOCTOR")
THE WHO: (Singing) Doctor, there's something wrong with me. My health is not all that it used to be. My heart is out of beat. I got chokers on my feet. My eyesight's getting dimmer. I can't see.
RAZ: Thanks for listening to our show, Getting Better, this week. If you want to find out more about who was on it, go to ted.npr.org. To see hundreds more TED talks, check out ted.com or the TED app. Our production staff at NPR includes Jeff Rogers, Brent Baughman, Megan Kane, Neva Grant, Sanaz Meshkinpour, Casey Herman, Rachel Faulkner and Rund Abdel-Fattah (ph), with help from Camilo Garzon and Daniel Shukin. Our intern is Thomas Lu. Our partners at TED Chris Anderson, Kelly Stoetzel, Anna Phelan and Janet Lee. If you want to let us know what you think about the show, you can write us at email@example.com. And you can follow us on Twitter. It's @TEDRadioHour. I'm Guy Raz, and you've been listening to ideas worth spreading right here on the TED Radio Hour from NPR. Transcript provided by NPR, Copyright NPR.