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 104.7 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. 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 voiceor 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. 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 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. 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 could now get hysteria, but of course women were still the most susceptible.
When I began investigating the history of my own disease, I was amazed to find how deep these ideas still run. In 1934, 198 doctors, nurses and staff at the Los Angeles County General Hospital became seriously ill. They had muscle weakness, stiffness in the neck and back, fevers — all of the same symptoms I had when I first got diagnosed. Doctors thought it was a new form of polio. Since then, there have been more than 70 outbreaks documented around the world, of a strikingly similar post-infectious disease. All of these outbreaks have tended to disproportionately affect women, and in time, when doctors failed to find the one cause of the disease, they thought that these outbreaks were mass hysteria.
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 of 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, and even today, women are 2 to 10 times more likely to receive that diagnosis.
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, and in the case of ME, psychological explanations have held back biological research. All around the world, ME is one of the least funded diseases. In the US, we spend each year roughly 2,500 dollars per AIDS patient, 250 dollars per MS patient and just 5 dollars per year per ME patient. This was not just lightning. I was not just unlucky. The ignorance surrounding my disease has been a choice, a choice made by the institutions that were supposed to protect us.
We don't know why ME sometimes runs in families, why you can get it after almost any infection, from enteroviruses to Epstein-Barr virus to Q fever, or why it affects women at two to three times the rate of men. This issue is much bigger than just my disease. When I first got sick, old friends were reaching out to me. I soon found myself a part of a cohort of women in their late 20s whose bodies were falling apart.What was striking was just how much trouble we were having being taken seriously.
I learned of one woman with scleroderma, an autoimmune connective tissue disease, who was told for years that it was all in her head. Between the time of onset and diagnosis, her esophagus was so thoroughly damaged, she will never be able to eat again. Another woman with ovarian cancer, who for years was told that it was just early menopause. A friend from college, whose brain tumor was misdiagnosed for years as anxiety.
Here's why this worries me: since the 1950s, rates of many autoimmune diseases have doubled to tripled. Forty-five percent of patients who are eventually diagnosed with a recognized autoimmune disease are initially told they're hypochondriacs. Like the hysteria of old, this has everything to do with gender and with whose stories we believe. Seventy-five percent of autoimmune disease patients are women, and in some diseases, it's as high as 90 percent. Even though these diseases disproportionately affect women, they are not women's diseases. ME affects children and ME affects millions of men. And as one patient told me, we get it coming and going — if you're a woman, you're told you're exaggerating your symptoms, but if you're a guy, you're told to be strong, to buck up. And men may even have a more difficult time getting diagnosed.
My brain is not what it used to be.
Here's the good part: despite everything, I still have hope. So many diseases were once thought of as psychological until science uncovered their biological mechanisms. Patients with epilepsy could be forcibly institutionalized until the EEG was able to measure abnormal electrical activity in the brain.Multiple sclerosis could be misdiagnosed as hysterical paralysis until the CAT scan and the MRI discovered brain lesions. And recently, we used to think that stomach ulcers were just caused by stress,until we discovered that H. pylori was the culprit. ME has never benefited from the kind of science that other diseases have had, but that's starting to change. In Germany, scientists are starting to find evidence of autoimmunity, and in Japan, of brain inflammation. In the US, scientists at Stanford are finding abnormalities in energy metabolism that are 16 standard deviations away from normal. And in Norway, researchers are running a phase-3 clinical trial on a cancer drug that in some patients causes complete remission.
What also gives me hope is the resilience of patients. Online we came together, and we shared our stories. We devoured what research there was. We experimented on ourselves. We became our own scientists and our own doctors because we had to be. And slowly I added five percent here, five percent there, until eventually, on a good day, I was able to leave my home. I still had to make ridiculous choices:Will I sit in the garden for 15 minutes, or will I wash my hair today? But it gave me hope that I could be treated. I had a sick body; that was all. And with the right kind of help, maybe one day I could get better.
I came together with patients around the world, and we started to fight. We have filled the void with something wonderful, but it is not enough. I still don't know if I will ever be able to run again, or walk at any distance, or do any of those kinetic things that I now only get to do in my dreams. But I am so grateful for how far I have come. Progress is slow, and it is up and it is down, but I am getting a little better each day.
I remember what it was like when I was stuck in that bedroom, when it had been months since I had seen the sun. I thought that I would die there. But here I am today, with you, and that is a miracle.
I don't know what would have happened had I not been one of the lucky ones, had I gotten sick before the internet, had I not found my community. I probably would have already taken my own life, as so many others have done. How many lives could we have saved, decades ago, if we had asked the right questions? How many lives could we save today if we decide to make a real start?
Even once the true cause of my disease is discovered, if we don't change our institutions and our culture,we will do this again to another disease. Living with this illness has taught me that science and medicine are profoundly human endeavors. Doctors, scientists and policy makers are not immune to the same biases that affect all of us.
We need to think in more nuanced ways about women's health. Our immune systems are just as much a battleground for equality as the rest of our bodies. We need to listen to patients' stories, and we need to be willing to say, "I don't know." "I don't know" is a beautiful thing. "I don't know" is where discovery starts. And if we can do that, if we can approach the great vastness of all that we do not know, and then, rather than fear uncertainty, maybe we can greet it with a sense of wonder.