What Happens When You Have a Disease Doctors Can’t Diagnose at Jennifer Brea (Transcript)

Hi. Thank you. [Jennifer Brea is sound-sensitive. The live audience was asked to applaud ASL-style, in silence]

So, five years ago, this was me. I was a PhD student at Harvard, and I loved to travel. I had just gotten engaged to marry the love of my life.

I was 28, and like so many of us when we are in good health, I felt like I was invincible. Then one day I had a fever of 1047 degrees. I probably should have gone to the doctor, but I’d never really been sick in my life, and I knew that usually, if you have a virus, you stay home and you make some chicken soup, and in a few days, everything will be fine. But this time it wasn’t fine.

After the fever broke, for three weeks I was so dizzy, I couldn’t leave my house. I would walk straight into door frames. I had to hug the walls just to make it to the bathroom. That spring I got infection after infection, and every time I went to the doctor, he said there was absolutely nothing wrong. He had his laboratory tests, which always came back normal.

All I had were my symptoms, which I could describe, but no one else can see I know it sounds silly, but you have to find a way to explain things like this to yourself, and so I thought maybe I was just aging. Maybe this is what it’s like to be on the other side of 25. Then the neurological symptoms started. Sometimes I would find that I couldn’t draw the right side of a circle.

Other times I wouldn’t be able to speak or move at all. I saw every kind of specialist: infectious disease doctors, dermatologists, endocrinologists, cardiologists. I even saw a psychiatrist. My psychiatrist said, “It’s clear you’re really sick, but not with anything psychiatric. I hope they can find out what’s wrong with you.”

The next day, my neurologist diagnosed me with conversion disorder. He told me that everything — the fevers, the sore throats, the sinus infection, all of the gastrointestinal, neurological and cardiac symptoms — were being caused by some distant emotional trauma that I could not remember. The symptoms were real, he said, but they had no biological cause. I was training to be a social scientist I had studied statistics, probability theory, mathematical modeling, experimental design.

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I felt like I couldn’t just reject my neurologist’s diagnosis. It didn’t feel true, but I knew from my training that the truth is often counterintuitive, so easily obscured by what we want to believe. So I had to consider the possibility that he was right. That day, I ran a small experiment. I walked back the two miles from my neurologist’s office to my house, my legs wrapped in this strange, almost electric kind of pain.

I meditated on that pain, contemplating how my mind could have possibly generated all this. As soon as I walked through the door, I collapsed. My brain and my spinal cord were burning. My neck was so stiff I couldn’t touch my chin to my chest, and the slightest sound — the rustling of the sheets, my husband walking barefoot in the next room — could cause excruciating pain. I would spend most of the next two years in bed.

How could my doctor have gotten it so wrong? I thought I had a rare disease, something doctors had never seen. And then I went online and found thousands of people all over the world living with the same symptoms, similarly isolated, similarly disbelieved. Some could still work, but had to spend their evenings and weekends in bed, just so they could show up the next Monday. On the other end of the spectrum, some were so sick they had to live in complete darkness, unable to tolerate the sound of a human voice or the touch of a loved one I was diagnosed with myalgic encephalomyelitis.

You’ve probably heard it called “chronic fatigue syndrome.” For decades, that’s a name that’s meant that this has been the dominant image of a disease that can be as serious as this. 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.

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It is a 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 anymore. It’s been four years, and I’ve still never been as well as I was the minute before I walked home from my neurologist’s office. It’s estimated that about 15 million to 30 million people around the world have this disease.

In the US, where I’m from, it’s about one 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. Yet doctors do not treat us and science does not study us.

How could a disease this common and this devastating have been forgotten by medicine? 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 the uterus would literally dry up and wander around the body in search of moisture, pressing on internal organs — yes — causing symptoms from extreme emotions to dizziness and paralysis. The cure was marriage and motherhood. These ideas went largely unchanged for several millennia until the 1880s, when neurologists tried to modernize the theory of hysteria.

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