badezimmer klein modern
translator: joseph genireviewer: camille martãnez hi. thank you. [jennifer brea is sound-sensitive. the live audience was askedto 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 engagedto marry the love of my life.
i was 28, and like so many of uswhen we are in good health, i felt like i was invincible. then one day i hada 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 makesome 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 wallsjust to make it to the bathroom. that spring i got infectionafter infection, and every time i went to the doctor, he said there was absolutelynothing 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 wayto explain things like this to yourself, and so i thought maybe i was just aging. maybe this is what it's liketo be on the other side of 25. (laughter) then the neurological symptoms started.
sometimes i would find that i couldn'tdraw the right side of a circle. other times i wouldn't be ableto 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 outwhat's wrong with you."
the next day, my neurologistdiagnosed 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 causedby 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 rejectmy neurologist's diagnosis. it didn't feel true, but i knew from my trainingthat the truth is often counterintuitive, so easily obscuredby what we want to believe. so i had to consider the possibilitythat he was right. that day, i ran a small experiment. i walked back the two milesfrom 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 mindcould 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 stiffi couldn't touch my chin to my chest, and the slightest sound -- the rustling of the sheets,
my husband walking barefootin the next room -- could cause excruciating pain. i would spend mostof the next two years in bed. how could my doctorhave 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 peopleall over the world living with the same symptoms,
similarly isolated, similarly disbelieved. some could still work, but had to spend their eveningsand weekends in bed, just so they could show upthe next monday. on the other end of the spectrum, some were so sick they had to live in complete darkness, unable to toleratethe sound of a human voice
or the touch of a loved one. i was diagnosedwith 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 beas 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 homefrom my neurologist's office. it's estimated that about 15 to 30 millionpeople 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 commonas multiple sclerosis. patients can live for decadeswith the physical function of someone with congestive heart failure.
twenty-five percent of usare homebound or bedridden, and 75 to 85 percent of uscan't even work part-time. yet doctors do not treat us and science does not study us. how could a disease this commonand this devastating have been forgotten by medicine? when my doctor diagnosed mewith conversion disorder, he was invoking a lineageof ideas about women's bodies that are over 2,500 years old.
the roman physician galen thought that hysteria was causedby sexual deprivation in particularly passionate women. the greeks thought the uteruswould literally dry up and wander around the bodyin 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 unchangedfor several millennia until the 1880s, when neurologists tried to modernizethe theory of hysteria. sigmund freud developed a theory that the unconscious mindcould produce physical symptoms when dealing with memories or emotions too painful for the consciousmind to handle. it converted these emotionsinto physical symptoms. this meant that mencould now get hysteria,
but of course women were stillthe most susceptible. when i began investigatingthe history of my own disease, i was amazed to find how deepthese ideas still run. in 1934, 198 doctors, nurses and staffat the los angeles county general hospital became seriously ill. they had muscle weakness, stiffnessin the neck and back, fevers -- all of the same symptomsi had when i first got diagnosed. doctors thoughtit was a new form of polio.
since then, there have been morethan 70 outbreaks documented around the world, of a strikingly similarpost-infectious disease. all of these outbreaks have tendedto disproportionately affect women, and in time, when doctors failed to findthe one cause of the disease, they thought that these outbreakswere 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 treatwhat would otherwise be untreatable, to explain illnessesthat have no explanation. the problem is that thiscan cause real harm. in the 1950s, a psychiatristnamed eliot slater studied a cohort of 85 patientswho had been diagnosed with hysteria. nine years later, 12 of them were deadand 30 had become disabled. many had undiagnosed conditionslike multiple sclerosis, epilepsy, brain tumors.
in 1980, hysteria was officiallyrenamed "conversion disorder." when my neurologist gave methat diagnosis in 2012, he was echoing freud's words verbatim, and even today, women are 2 to 10 times more likelyto receive that diagnosis. the problem with the theory of hysteriaor psychogenic illness is that it can never be proven. it is by definitionthe absence of evidence, and in the case of me,
psychological explanationshave held back biological research. all around the world, me is oneof the least funded diseases. in the us, we spend each yearroughly 2,500 dollars per aids patient, 250 dollars per ms patient and just 5 dollars per yearper me patient. this was not just lightning. i was not just unlucky. the ignorance surrounding my diseasehas been a choice, a choice made by the institutionsthat were supposed to protect us.
we don't know why mesometimes runs in families, why you can get itafter almost any infection, from enterovirusesto epstein-barr virus to q fever, or why it affects womenat two to three times the rate of men. this issue is much biggerthan just my disease. when i first got sick, old friends were reaching out to me. i soon found myself a partof a cohort of women in their late 20s whose bodies were falling apart.
what was striking was just howmuch trouble we were having being taken seriously. i learned of one woman with scleroderma, an autoimmune connective tissue disease, who was told for yearsthat 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 toldthat it was just early menopause. a friend from college, whose brain tumor was misdiagnosedfor years as anxiety. here's why this worries me: since the 1950s, rates of manyautoimmune diseases have doubled to tripled. forty-five percent of patientswho 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 percentof autoimmune disease patients are women, and in some diseases,it's as high as 90 percent. even though these diseasesdisproportionately affect women, they are not women's diseases. me affects childrenand me affects millions of men. and as one patient told me, we get it coming and going --
if you're a woman, you're toldyou're exaggerating your symptoms, but if you're a guy, you're toldto be strong, to buck up. and men may even havea 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 oncethought of as psychological until science uncoveredtheir biological mechanisms. patients with epilepsycould be forcibly institutionalized
until the eeg was able to measureabnormal electrical activity in the brain. multiple sclerosis could be misdiagnosedas hysterical paralysis until the cat scan and the mridiscovered brain lesions. and recently, we used to think that stomach ulcerswere just caused by stress, until we discoveredthat h. pylori was the culprit. me has never benefitedfrom the kind of science that other diseases have had, but that's starting to change.
in germany, scientists are startingto find evidence of autoimmunity, and in japan, of brain inflammation. in the us, scientists at stanfordare finding abnormalities in energy metabolism that are 16 standard deviationsaway from normal. and in norway, researchersare running a phase-3 clinical trial on a cancer drug that in some patientscauses 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 scientistsand 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 hopethat 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 patientsaround the world, and we started to fight. we have filled the voidwith something wonderful, but it is not enough.
i still don't know if i will everbe able to run again, or walk at any distance, or do any of those kinetic thingsthat i now only get to do in my dreams. but i am so gratefulfor 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 likewhen i was stuck in that bedroom,
when it had been monthssince 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 happenedhad 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 alreadytaken my own life,
as so many others have done. how many lives couldwe 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 causeof my disease is discovered, if we don't changeour institutions and our culture, we will do this again to another disease. living with this illness has taught me
that science and medicineare 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 waysabout women's health. our immune systems are just as mucha battleground for equality as the rest of our bodies. we need to listen to patients' stories, and we need to be willingto 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 vastnessof all that we do not know, and then, rather than fear uncertainty, maybe we can greet itwith a sense of wonder.