[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:05.42,0:00:06.86,Default,,0000,0000,0000,,Hi.
Dialogue: 0,0:00:07.62,0:00:08.96,Default,,0000,0000,0000,,Thank you.
Dialogue: 0,0:00:08.98,0:00:10.68,Default,,0000,0000,0000,,[Jennifer Brea is sound-sensitive.
Dialogue: 0,0:00:10.70,0:00:13.85,Default,,0000,0000,0000,,The live audience was asked\Nto applaud ASL-style, in silence.]
Dialogue: 0,0:00:13.87,0:00:17.24,Default,,0000,0000,0000,,So, five years ago, this was me.
Dialogue: 0,0:00:17.75,0:00:19.75,Default,,0000,0000,0000,,I was a PhD student at Harvard,
Dialogue: 0,0:00:19.78,0:00:21.81,Default,,0000,0000,0000,,and I loved to travel.
Dialogue: 0,0:00:22.47,0:00:25.65,Default,,0000,0000,0000,,I had just gotten engaged\Nto marry the love of my life.
Dialogue: 0,0:00:27.07,0:00:31.05,Default,,0000,0000,0000,,I was 28, and like so many of us\Nwhen we are in good health,
Dialogue: 0,0:00:31.07,0:00:33.10,Default,,0000,0000,0000,,I felt like I was invincible.
Dialogue: 0,0:00:34.48,0:00:38.15,Default,,0000,0000,0000,,Then one day I had\Na fever of 104.7 degrees.
Dialogue: 0,0:00:38.76,0:00:40.81,Default,,0000,0000,0000,,I probably should have gone to the doctor,
Dialogue: 0,0:00:40.83,0:00:43.40,Default,,0000,0000,0000,,but I'd never really been sick in my life,
Dialogue: 0,0:00:43.42,0:00:45.77,Default,,0000,0000,0000,,and I knew that usually,\Nif you have a virus,
Dialogue: 0,0:00:45.80,0:00:48.93,Default,,0000,0000,0000,,you stay home and you make\Nsome chicken soup,
Dialogue: 0,0:00:48.95,0:00:51.27,Default,,0000,0000,0000,,and in a few days,\Neverything will be fine.
Dialogue: 0,0:00:52.50,0:00:54.34,Default,,0000,0000,0000,,But this time it wasn't fine.
Dialogue: 0,0:00:55.56,0:00:57.10,Default,,0000,0000,0000,,After the fever broke,
Dialogue: 0,0:00:57.12,0:01:00.97,Default,,0000,0000,0000,,for three weeks I was so dizzy,\NI couldn't leave my house.
Dialogue: 0,0:01:01.47,0:01:03.66,Default,,0000,0000,0000,,I would walk straight into door frames.
Dialogue: 0,0:01:04.34,0:01:07.30,Default,,0000,0000,0000,,I had to hug the walls\Njust to make it to the bathroom.
Dialogue: 0,0:01:08.61,0:01:11.27,Default,,0000,0000,0000,,That spring I got infection\Nafter infection,
Dialogue: 0,0:01:11.82,0:01:13.65,Default,,0000,0000,0000,,and every time I went to the doctor,
Dialogue: 0,0:01:13.68,0:01:16.46,Default,,0000,0000,0000,,he said there was absolutely\Nnothing wrong.
Dialogue: 0,0:01:17.53,0:01:19.16,Default,,0000,0000,0000,,He had his laboratory tests,
Dialogue: 0,0:01:19.18,0:01:21.09,Default,,0000,0000,0000,,which always came back normal.
Dialogue: 0,0:01:21.88,0:01:23.84,Default,,0000,0000,0000,,All I had were my symptoms,
Dialogue: 0,0:01:23.87,0:01:25.80,Default,,0000,0000,0000,,which I could describe,
Dialogue: 0,0:01:25.82,0:01:27.51,Default,,0000,0000,0000,,but no one else can see.
Dialogue: 0,0:01:29.37,0:01:30.59,Default,,0000,0000,0000,,I know it sounds silly,
Dialogue: 0,0:01:30.62,0:01:33.88,Default,,0000,0000,0000,,but you have to find a way\Nto explain things like this to yourself,
Dialogue: 0,0:01:33.91,0:01:37.53,Default,,0000,0000,0000,,and so I thought maybe I was just aging.
Dialogue: 0,0:01:38.11,0:01:41.67,Default,,0000,0000,0000,,Maybe this is what it's like\Nto be on the other side of 25.
Dialogue: 0,0:01:41.69,0:01:43.98,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:01:44.81,0:01:46.98,Default,,0000,0000,0000,,Then the neurological symptoms started.
Dialogue: 0,0:01:47.59,0:01:51.30,Default,,0000,0000,0000,,Sometimes I would find that I couldn't\Ndraw the right side of a circle.
Dialogue: 0,0:01:52.32,0:01:55.63,Default,,0000,0000,0000,,Other times I wouldn't be able\Nto speak or move at all.
Dialogue: 0,0:01:58.33,0:02:00.06,Default,,0000,0000,0000,,I saw every kind of specialist:
Dialogue: 0,0:02:00.09,0:02:03.16,Default,,0000,0000,0000,,infectious disease doctors,\Ndermatologists, endocrinologists,
Dialogue: 0,0:02:03.18,0:02:04.47,Default,,0000,0000,0000,,cardiologists.
Dialogue: 0,0:02:04.94,0:02:06.86,Default,,0000,0000,0000,,I even saw a psychiatrist.
Dialogue: 0,0:02:07.68,0:02:10.92,Default,,0000,0000,0000,,My psychiatrist said,\N"It's clear you're really sick,
Dialogue: 0,0:02:10.95,0:02:13.10,Default,,0000,0000,0000,,but not with anything psychiatric.
Dialogue: 0,0:02:14.04,0:02:16.78,Default,,0000,0000,0000,,I hope they can find out\Nwhat's wrong with you."
Dialogue: 0,0:02:18.09,0:02:22.16,Default,,0000,0000,0000,,The next day, my neurologist\Ndiagnosed me with conversion disorder.
Dialogue: 0,0:02:22.84,0:02:24.52,Default,,0000,0000,0000,,He told me that everything --
Dialogue: 0,0:02:25.26,0:02:28.23,Default,,0000,0000,0000,,the fevers, the sore throats,\Nthe sinus infection,
Dialogue: 0,0:02:28.92,0:02:32.25,Default,,0000,0000,0000,,all of the gastrointestinal,\Nneurological and cardiac symptoms --
Dialogue: 0,0:02:32.72,0:02:35.43,Default,,0000,0000,0000,,were being caused\Nby some distant emotional trauma
Dialogue: 0,0:02:35.46,0:02:37.06,Default,,0000,0000,0000,,that I could not remember.
Dialogue: 0,0:02:38.07,0:02:40.07,Default,,0000,0000,0000,,The symptoms were real, he said,
Dialogue: 0,0:02:40.55,0:02:42.90,Default,,0000,0000,0000,,but they had no biological cause.
Dialogue: 0,0:02:44.53,0:02:47.14,Default,,0000,0000,0000,,I was training to be a social scientist.
Dialogue: 0,0:02:47.16,0:02:50.39,Default,,0000,0000,0000,,I had studied statistics,\Nprobability theory,
Dialogue: 0,0:02:50.42,0:02:52.99,Default,,0000,0000,0000,,mathematical modeling,\Nexperimental design.
Dialogue: 0,0:02:55.06,0:02:59.05,Default,,0000,0000,0000,,I felt like I couldn't just reject\Nmy neurologist's diagnosis.
Dialogue: 0,0:02:59.60,0:03:01.19,Default,,0000,0000,0000,,It didn't feel true,
Dialogue: 0,0:03:01.22,0:03:04.68,Default,,0000,0000,0000,,but I knew from my training\Nthat the truth is often counterintuitive,
Dialogue: 0,0:03:05.36,0:03:07.95,Default,,0000,0000,0000,,so easily obscured\Nby what we want to believe.
Dialogue: 0,0:03:08.51,0:03:11.45,Default,,0000,0000,0000,,So I had to consider the possibility\Nthat he was right.
Dialogue: 0,0:03:13.60,0:03:16.12,Default,,0000,0000,0000,,That day, I ran a small experiment.
Dialogue: 0,0:03:16.92,0:03:20.33,Default,,0000,0000,0000,,I walked back the two miles\Nfrom my neurologist's office to my house,
Dialogue: 0,0:03:21.23,0:03:25.26,Default,,0000,0000,0000,,my legs wrapped in this strange,\Nalmost electric kind of pain.
Dialogue: 0,0:03:26.48,0:03:28.08,Default,,0000,0000,0000,,I meditated on that pain,
Dialogue: 0,0:03:28.10,0:03:32.12,Default,,0000,0000,0000,,contemplating how my mind\Ncould have possibly generated all this.
Dialogue: 0,0:03:33.32,0:03:35.20,Default,,0000,0000,0000,,As soon as I walked through the door,
Dialogue: 0,0:03:35.22,0:03:36.38,Default,,0000,0000,0000,,I collapsed.
Dialogue: 0,0:03:36.84,0:03:39.62,Default,,0000,0000,0000,,My brain and my spinal cord were burning.
Dialogue: 0,0:03:40.70,0:03:44.47,Default,,0000,0000,0000,,My neck was so stiff\NI couldn't touch my chin to my chest,
Dialogue: 0,0:03:45.32,0:03:47.08,Default,,0000,0000,0000,,and the slightest sound --
Dialogue: 0,0:03:47.10,0:03:48.93,Default,,0000,0000,0000,,the rustling of the sheets,
Dialogue: 0,0:03:48.96,0:03:51.22,Default,,0000,0000,0000,,my husband walking barefoot\Nin the next room --
Dialogue: 0,0:03:51.74,0:03:53.87,Default,,0000,0000,0000,,could cause excruciating pain.
Dialogue: 0,0:03:55.83,0:03:58.42,Default,,0000,0000,0000,,I would spend most\Nof the next two years in bed.
Dialogue: 0,0:03:59.24,0:04:01.100,Default,,0000,0000,0000,,How could my doctor\Nhave gotten it so wrong?
Dialogue: 0,0:04:02.94,0:04:05.12,Default,,0000,0000,0000,,I thought I had a rare disease,
Dialogue: 0,0:04:05.14,0:04:07.13,Default,,0000,0000,0000,,something doctors had never seen.
Dialogue: 0,0:04:07.93,0:04:09.12,Default,,0000,0000,0000,,And then I went online
Dialogue: 0,0:04:09.14,0:04:11.52,Default,,0000,0000,0000,,and found thousands of people\Nall over the world
Dialogue: 0,0:04:11.98,0:04:13.60,Default,,0000,0000,0000,,living with the same symptoms,
Dialogue: 0,0:04:14.09,0:04:15.65,Default,,0000,0000,0000,,similarly isolated,
Dialogue: 0,0:04:15.68,0:04:17.13,Default,,0000,0000,0000,,similarly disbelieved.
Dialogue: 0,0:04:17.85,0:04:19.14,Default,,0000,0000,0000,,Some could still work,
Dialogue: 0,0:04:19.16,0:04:21.65,Default,,0000,0000,0000,,but had to spend their evenings\Nand weekends in bed,
Dialogue: 0,0:04:21.67,0:04:23.74,Default,,0000,0000,0000,,just so they could show up\Nthe next Monday.
Dialogue: 0,0:04:24.36,0:04:26.44,Default,,0000,0000,0000,,On the other end of the spectrum,
Dialogue: 0,0:04:26.47,0:04:28.21,Default,,0000,0000,0000,,some were so sick
Dialogue: 0,0:04:28.23,0:04:30.54,Default,,0000,0000,0000,,they had to live in complete darkness,
Dialogue: 0,0:04:30.56,0:04:33.93,Default,,0000,0000,0000,,unable to tolerate\Nthe sound of a human voice
Dialogue: 0,0:04:33.96,0:04:35.86,Default,,0000,0000,0000,,or the touch of a loved one.
Dialogue: 0,0:04:37.47,0:04:41.47,Default,,0000,0000,0000,,I was diagnosed\Nwith myalgic encephalomyelitis.
Dialogue: 0,0:04:42.55,0:04:46.01,Default,,0000,0000,0000,,You've probably heard it called\N"chronic fatigue syndrome."
Dialogue: 0,0:04:46.99,0:04:48.91,Default,,0000,0000,0000,,For decades, that's a name
Dialogue: 0,0:04:48.93,0:04:50.54,Default,,0000,0000,0000,,that's meant that this
Dialogue: 0,0:04:51.58,0:04:52.96,Default,,0000,0000,0000,,has been the dominant image
Dialogue: 0,0:04:52.98,0:04:56.26,Default,,0000,0000,0000,,of a disease that can be\Nas serious as this.
Dialogue: 0,0:04:57.47,0:04:58.99,Default,,0000,0000,0000,,The key symptom we all share
Dialogue: 0,0:04:59.02,0:05:02.77,Default,,0000,0000,0000,,is that whenever we exert ourselves --\Nphysically, mentally --
Dialogue: 0,0:05:03.30,0:05:05.25,Default,,0000,0000,0000,,we pay and we pay hard.
Dialogue: 0,0:05:05.81,0:05:09.30,Default,,0000,0000,0000,,If my husband goes for a run,\Nhe might be sore for a couple of days.
Dialogue: 0,0:05:09.32,0:05:12.72,Default,,0000,0000,0000,,If I try to walk half a block,\NI might be bedridden for a week.
Dialogue: 0,0:05:13.32,0:05:15.58,Default,,0000,0000,0000,,It is a perfect custom prison.
Dialogue: 0,0:05:16.26,0:05:19.01,Default,,0000,0000,0000,,I know ballet dancers who can't dance,
Dialogue: 0,0:05:19.03,0:05:21.21,Default,,0000,0000,0000,,accountants who can't add,
Dialogue: 0,0:05:21.23,0:05:23.79,Default,,0000,0000,0000,,medical students who never became doctors.
Dialogue: 0,0:05:24.42,0:05:26.59,Default,,0000,0000,0000,,It doesn't matter what you once were;
Dialogue: 0,0:05:27.06,0:05:28.85,Default,,0000,0000,0000,,you can't do it anymore.
Dialogue: 0,0:05:29.48,0:05:31.36,Default,,0000,0000,0000,,It's been four years,
Dialogue: 0,0:05:31.39,0:05:33.98,Default,,0000,0000,0000,,and I've still never been as well as I was
Dialogue: 0,0:05:34.01,0:05:37.48,Default,,0000,0000,0000,,the minute before I walked home\Nfrom my neurologist's office.
Dialogue: 0,0:05:38.68,0:05:41.88,Default,,0000,0000,0000,,It's estimated that about 15 to 30 million\Npeople around the world
Dialogue: 0,0:05:41.90,0:05:43.16,Default,,0000,0000,0000,,have this disease.
Dialogue: 0,0:05:43.60,0:05:46.87,Default,,0000,0000,0000,,In the US, where I'm from,\Nit's about one million people.
Dialogue: 0,0:05:46.89,0:05:50.52,Default,,0000,0000,0000,,That makes it roughly twice as common\Nas multiple sclerosis.
Dialogue: 0,0:05:51.80,0:05:54.54,Default,,0000,0000,0000,,Patients can live for decades\Nwith the physical function
Dialogue: 0,0:05:54.56,0:05:56.70,Default,,0000,0000,0000,,of someone with congestive heart failure.
Dialogue: 0,0:05:57.31,0:06:00.35,Default,,0000,0000,0000,,Twenty-five percent of us\Nare homebound or bedridden,
Dialogue: 0,0:06:00.93,0:06:04.63,Default,,0000,0000,0000,,and 75 to 85 percent of us\Ncan't even work part-time.
Dialogue: 0,0:06:05.38,0:06:07.39,Default,,0000,0000,0000,,Yet doctors do not treat us
Dialogue: 0,0:06:08.06,0:06:10.00,Default,,0000,0000,0000,,and science does not study us.
Dialogue: 0,0:06:11.12,0:06:14.54,Default,,0000,0000,0000,,How could a disease this common\Nand this devastating
Dialogue: 0,0:06:15.32,0:06:17.15,Default,,0000,0000,0000,,have been forgotten by medicine?
Dialogue: 0,0:06:19.26,0:06:21.79,Default,,0000,0000,0000,,When my doctor diagnosed me\Nwith conversion disorder,
Dialogue: 0,0:06:21.81,0:06:24.50,Default,,0000,0000,0000,,he was invoking a lineage\Nof ideas about women's bodies
Dialogue: 0,0:06:24.52,0:06:26.67,Default,,0000,0000,0000,,that are over 2,500 years old.
Dialogue: 0,0:06:27.22,0:06:28.95,Default,,0000,0000,0000,,The Roman physician Galen thought
Dialogue: 0,0:06:28.97,0:06:31.94,Default,,0000,0000,0000,,that hysteria was caused\Nby sexual deprivation
Dialogue: 0,0:06:31.97,0:06:34.49,Default,,0000,0000,0000,,in particularly passionate women.
Dialogue: 0,0:06:35.12,0:06:37.89,Default,,0000,0000,0000,,The Greeks thought the uterus\Nwould literally dry up
Dialogue: 0,0:06:37.91,0:06:40.34,Default,,0000,0000,0000,,and wander around the body\Nin search of moisture,
Dialogue: 0,0:06:40.36,0:06:42.26,Default,,0000,0000,0000,,pressing on internal organs --
Dialogue: 0,0:06:42.28,0:06:43.50,Default,,0000,0000,0000,,yes --
Dialogue: 0,0:06:44.65,0:06:47.34,Default,,0000,0000,0000,,causing symptoms from extreme emotions
Dialogue: 0,0:06:47.37,0:06:49.61,Default,,0000,0000,0000,,to dizziness and paralysis.
Dialogue: 0,0:06:50.72,0:06:53.32,Default,,0000,0000,0000,,The cure was marriage and motherhood.
Dialogue: 0,0:06:54.90,0:06:59.46,Default,,0000,0000,0000,,These ideas went largely unchanged\Nfor several millennia until the 1880s,
Dialogue: 0,0:06:59.48,0:07:03.18,Default,,0000,0000,0000,,when neurologists tried to modernize\Nthe theory of hysteria.
Dialogue: 0,0:07:03.76,0:07:05.42,Default,,0000,0000,0000,,Sigmund Freud developed a theory
Dialogue: 0,0:07:05.44,0:07:08.24,Default,,0000,0000,0000,,that the unconscious mind\Ncould produce physical symptoms
Dialogue: 0,0:07:08.26,0:07:10.28,Default,,0000,0000,0000,,when dealing with memories or emotions
Dialogue: 0,0:07:10.30,0:07:12.61,Default,,0000,0000,0000,,too painful for the conscious\Nmind to handle.
Dialogue: 0,0:07:12.64,0:07:15.51,Default,,0000,0000,0000,,It converted these emotions\Ninto physical symptoms.
Dialogue: 0,0:07:17.46,0:07:19.66,Default,,0000,0000,0000,,This meant that men\Ncould now get hysteria,
Dialogue: 0,0:07:19.68,0:07:22.18,Default,,0000,0000,0000,,but of course women were still\Nthe most susceptible.
Dialogue: 0,0:07:23.45,0:07:27.06,Default,,0000,0000,0000,,When I began investigating\Nthe history of my own disease,
Dialogue: 0,0:07:27.09,0:07:30.13,Default,,0000,0000,0000,,I was amazed to find how deep\Nthese ideas still run.
Dialogue: 0,0:07:31.01,0:07:32.20,Default,,0000,0000,0000,,In 1934,
Dialogue: 0,0:07:32.22,0:07:36.100,Default,,0000,0000,0000,,198 doctors, nurses and staff\Nat the Los Angeles County General Hospital
Dialogue: 0,0:07:37.02,0:07:38.56,Default,,0000,0000,0000,,became seriously ill.
Dialogue: 0,0:07:38.58,0:07:42.100,Default,,0000,0000,0000,,They had muscle weakness, stiffness\Nin the neck and back, fevers --
Dialogue: 0,0:07:43.02,0:07:46.37,Default,,0000,0000,0000,,all of the same symptoms\NI had when I first got diagnosed.
Dialogue: 0,0:07:46.93,0:07:49.25,Default,,0000,0000,0000,,Doctors thought\Nit was a new form of polio.
Dialogue: 0,0:07:50.13,0:07:53.06,Default,,0000,0000,0000,,Since then, there have been more\Nthan 70 outbreaks documented
Dialogue: 0,0:07:53.09,0:07:54.25,Default,,0000,0000,0000,,around the world,
Dialogue: 0,0:07:54.27,0:07:56.71,Default,,0000,0000,0000,,of a strikingly similar\Npost-infectious disease.
Dialogue: 0,0:07:57.42,0:08:00.91,Default,,0000,0000,0000,,All of these outbreaks have tended\Nto disproportionately affect women,
Dialogue: 0,0:08:01.48,0:08:05.41,Default,,0000,0000,0000,,and in time, when doctors failed to find\Nthe one cause of the disease,
Dialogue: 0,0:08:05.43,0:08:08.57,Default,,0000,0000,0000,,they thought that these outbreaks\Nwere mass hysteria.
Dialogue: 0,0:08:09.12,0:08:12.02,Default,,0000,0000,0000,,Why has this idea had such staying power?
Dialogue: 0,0:08:13.57,0:08:15.36,Default,,0000,0000,0000,,I do think it has to do with sexism,
Dialogue: 0,0:08:15.39,0:08:18.83,Default,,0000,0000,0000,,but I also think that fundamentally,\Ndoctors want to help.
Dialogue: 0,0:08:18.85,0:08:20.62,Default,,0000,0000,0000,,They want to know the answer,
Dialogue: 0,0:08:20.65,0:08:25.54,Default,,0000,0000,0000,,and this category allows doctors to treat\Nwhat would otherwise be untreatable,
Dialogue: 0,0:08:25.56,0:08:28.37,Default,,0000,0000,0000,,to explain illnesses\Nthat have no explanation.
Dialogue: 0,0:08:29.08,0:08:31.77,Default,,0000,0000,0000,,The problem is that this\Ncan cause real harm.
Dialogue: 0,0:08:32.38,0:08:35.98,Default,,0000,0000,0000,,In the 1950s, a psychiatrist\Nnamed Eliot Slater
Dialogue: 0,0:08:36.00,0:08:40.19,Default,,0000,0000,0000,,studied a cohort of 85 patients\Nwho had been diagnosed with hysteria.
Dialogue: 0,0:08:40.77,0:08:44.76,Default,,0000,0000,0000,,Nine years later, 12 of them were dead\Nand 30 had become disabled.
Dialogue: 0,0:08:44.79,0:08:48.22,Default,,0000,0000,0000,,Many had undiagnosed conditions\Nlike multiple sclerosis,
Dialogue: 0,0:08:48.24,0:08:50.14,Default,,0000,0000,0000,,epilepsy, brain tumors.
Dialogue: 0,0:08:51.26,0:08:54.98,Default,,0000,0000,0000,,In 1980, hysteria was officially\Nrenamed "conversion disorder."
Dialogue: 0,0:08:55.56,0:08:58.89,Default,,0000,0000,0000,,When my neurologist gave me\Nthat diagnosis in 2012,
Dialogue: 0,0:08:58.91,0:09:01.53,Default,,0000,0000,0000,,he was echoing Freud's words verbatim,
Dialogue: 0,0:09:01.55,0:09:02.70,Default,,0000,0000,0000,,and even today,
Dialogue: 0,0:09:02.73,0:09:07.10,Default,,0000,0000,0000,,women are 2 to 10 times more likely\Nto receive that diagnosis.
Dialogue: 0,0:09:08.49,0:09:12.49,Default,,0000,0000,0000,,The problem with the theory of hysteria\Nor psychogenic illness
Dialogue: 0,0:09:12.51,0:09:14.54,Default,,0000,0000,0000,,is that it can never be proven.
Dialogue: 0,0:09:14.57,0:09:17.42,Default,,0000,0000,0000,,It is by definition\Nthe absence of evidence,
Dialogue: 0,0:09:18.19,0:09:19.57,Default,,0000,0000,0000,,and in the case of ME,
Dialogue: 0,0:09:19.59,0:09:23.60,Default,,0000,0000,0000,,psychological explanations\Nhave held back biological research.
Dialogue: 0,0:09:23.62,0:09:26.92,Default,,0000,0000,0000,,All around the world, ME is one\Nof the least funded diseases.
Dialogue: 0,0:09:27.32,0:09:34.26,Default,,0000,0000,0000,,In the US, we spend each year\Nroughly 2,500 dollars per AIDS patient,
Dialogue: 0,0:09:34.81,0:09:37.53,Default,,0000,0000,0000,,250 dollars per MS patient
Dialogue: 0,0:09:38.10,0:09:41.31,Default,,0000,0000,0000,,and just 5 dollars per year\Nper ME patient.
Dialogue: 0,0:09:42.12,0:09:44.21,Default,,0000,0000,0000,,This was not just lightning.
Dialogue: 0,0:09:44.23,0:09:45.99,Default,,0000,0000,0000,,I was not just unlucky.
Dialogue: 0,0:09:46.49,0:09:49.58,Default,,0000,0000,0000,,The ignorance surrounding my disease\Nhas been a choice,
Dialogue: 0,0:09:49.61,0:09:53.73,Default,,0000,0000,0000,,a choice made by the institutions\Nthat were supposed to protect us.
Dialogue: 0,0:09:55.54,0:09:58.41,Default,,0000,0000,0000,,We don't know why ME\Nsometimes runs in families,
Dialogue: 0,0:09:58.43,0:10:00.90,Default,,0000,0000,0000,,why you can get it\Nafter almost any infection,
Dialogue: 0,0:10:00.92,0:10:04.65,Default,,0000,0000,0000,,from enteroviruses\Nto Epstein-Barr virus to Q fever,
Dialogue: 0,0:10:05.12,0:10:08.36,Default,,0000,0000,0000,,or why it affects women\Nat two to three times the rate of men.
Dialogue: 0,0:10:09.06,0:10:11.78,Default,,0000,0000,0000,,This issue is much bigger\Nthan just my disease.
Dialogue: 0,0:10:12.36,0:10:13.54,Default,,0000,0000,0000,,When I first got sick,
Dialogue: 0,0:10:13.56,0:10:15.72,Default,,0000,0000,0000,,old friends were reaching out to me.
Dialogue: 0,0:10:16.18,0:10:19.31,Default,,0000,0000,0000,,I soon found myself a part\Nof a cohort of women in their late 20s
Dialogue: 0,0:10:19.33,0:10:21.02,Default,,0000,0000,0000,,whose bodies were falling apart.
Dialogue: 0,0:10:22.01,0:10:24.87,Default,,0000,0000,0000,,What was striking was just how\Nmuch trouble we were having
Dialogue: 0,0:10:24.89,0:10:26.05,Default,,0000,0000,0000,,being taken seriously.
Dialogue: 0,0:10:26.58,0:10:28.54,Default,,0000,0000,0000,,I learned of one woman with scleroderma,
Dialogue: 0,0:10:28.56,0:10:30.66,Default,,0000,0000,0000,,an autoimmune connective tissue disease,
Dialogue: 0,0:10:30.68,0:10:33.39,Default,,0000,0000,0000,,who was told for years\Nthat it was all in her head.
Dialogue: 0,0:10:33.42,0:10:35.93,Default,,0000,0000,0000,,Between the time of onset and diagnosis,
Dialogue: 0,0:10:35.95,0:10:38.38,Default,,0000,0000,0000,,her esophagus was so thoroughly damaged,
Dialogue: 0,0:10:38.40,0:10:40.65,Default,,0000,0000,0000,,she will never be able to eat again.
Dialogue: 0,0:10:40.67,0:10:42.86,Default,,0000,0000,0000,,Another woman with ovarian cancer,
Dialogue: 0,0:10:43.38,0:10:46.12,Default,,0000,0000,0000,,who for years was told\Nthat it was just early menopause.
Dialogue: 0,0:10:47.19,0:10:48.76,Default,,0000,0000,0000,,A friend from college,
Dialogue: 0,0:10:48.78,0:10:52.68,Default,,0000,0000,0000,,whose brain tumor was misdiagnosed\Nfor years as anxiety.
Dialogue: 0,0:10:54.22,0:10:55.83,Default,,0000,0000,0000,,Here's why this worries me:
Dialogue: 0,0:10:57.12,0:11:00.58,Default,,0000,0000,0000,,since the 1950s, rates of many\Nautoimmune diseases
Dialogue: 0,0:11:00.60,0:11:02.30,Default,,0000,0000,0000,,have doubled to tripled.
Dialogue: 0,0:11:02.82,0:11:05.76,Default,,0000,0000,0000,,Forty-five percent of patients\Nwho are eventually diagnosed
Dialogue: 0,0:11:05.78,0:11:07.78,Default,,0000,0000,0000,,with a recognized autoimmune disease
Dialogue: 0,0:11:07.80,0:11:10.31,Default,,0000,0000,0000,,are initially told they're hypochondriacs.
Dialogue: 0,0:11:10.78,0:11:13.93,Default,,0000,0000,0000,,Like the hysteria of old,\Nthis has everything to do with gender
Dialogue: 0,0:11:13.96,0:11:15.82,Default,,0000,0000,0000,,and with whose stories we believe.
Dialogue: 0,0:11:16.97,0:11:20.62,Default,,0000,0000,0000,,Seventy-five percent\Nof autoimmune disease patients are women,
Dialogue: 0,0:11:20.65,0:11:23.83,Default,,0000,0000,0000,,and in some diseases,\Nit's as high as 90 percent.
Dialogue: 0,0:11:25.08,0:11:27.93,Default,,0000,0000,0000,,Even though these diseases\Ndisproportionately affect women,
Dialogue: 0,0:11:27.96,0:11:29.61,Default,,0000,0000,0000,,they are not women's diseases.
Dialogue: 0,0:11:29.63,0:11:33.32,Default,,0000,0000,0000,,ME affects children\Nand ME affects millions of men.
Dialogue: 0,0:11:33.34,0:11:35.13,Default,,0000,0000,0000,,And as one patient told me,
Dialogue: 0,0:11:35.15,0:11:36.66,Default,,0000,0000,0000,,we get it coming and going --
Dialogue: 0,0:11:36.69,0:11:40.29,Default,,0000,0000,0000,,if you're a woman, you're told\Nyou're exaggerating your symptoms,
Dialogue: 0,0:11:40.32,0:11:43.78,Default,,0000,0000,0000,,but if you're a guy, you're told\Nto be strong, to buck up.
Dialogue: 0,0:11:44.68,0:11:48.82,Default,,0000,0000,0000,,And men may even have\Na more difficult time getting diagnosed.
Dialogue: 0,0:11:57.42,0:12:00.28,Default,,0000,0000,0000,,My brain is not what it used to be.
Dialogue: 0,0:12:13.91,0:12:15.24,Default,,0000,0000,0000,,Here's the good part:
Dialogue: 0,0:12:16.64,0:12:18.82,Default,,0000,0000,0000,,despite everything, I still have hope.
Dialogue: 0,0:12:19.90,0:12:23.80,Default,,0000,0000,0000,,So many diseases were once\Nthought of as psychological
Dialogue: 0,0:12:23.83,0:12:26.74,Default,,0000,0000,0000,,until science uncovered\Ntheir biological mechanisms.
Dialogue: 0,0:12:27.32,0:12:30.42,Default,,0000,0000,0000,,Patients with epilepsy\Ncould be forcibly institutionalized
Dialogue: 0,0:12:30.44,0:12:35.04,Default,,0000,0000,0000,,until the EEG was able to measure\Nabnormal electrical activity in the brain.
Dialogue: 0,0:12:35.50,0:12:39.78,Default,,0000,0000,0000,,Multiple sclerosis could be misdiagnosed\Nas hysterical paralysis
Dialogue: 0,0:12:39.80,0:12:43.11,Default,,0000,0000,0000,,until the CAT scan and the MRI\Ndiscovered brain lesions.
Dialogue: 0,0:12:43.94,0:12:45.46,Default,,0000,0000,0000,,And recently, we used to think
Dialogue: 0,0:12:45.48,0:12:48.30,Default,,0000,0000,0000,,that stomach ulcers\Nwere just caused by stress,
Dialogue: 0,0:12:48.33,0:12:51.65,Default,,0000,0000,0000,,until we discovered\Nthat H. pylori was the culprit.
Dialogue: 0,0:12:52.80,0:12:55.70,Default,,0000,0000,0000,,ME has never benefited\Nfrom the kind of science
Dialogue: 0,0:12:55.72,0:12:58.03,Default,,0000,0000,0000,,that other diseases have had,
Dialogue: 0,0:12:58.05,0:12:59.72,Default,,0000,0000,0000,,but that's starting to change.
Dialogue: 0,0:13:00.66,0:13:04.20,Default,,0000,0000,0000,,In Germany, scientists are starting\Nto find evidence of autoimmunity,
Dialogue: 0,0:13:04.23,0:13:06.57,Default,,0000,0000,0000,,and in Japan, of brain inflammation.
Dialogue: 0,0:13:07.41,0:13:10.46,Default,,0000,0000,0000,,In the US, scientists at Stanford\Nare finding abnormalities
Dialogue: 0,0:13:10.48,0:13:12.38,Default,,0000,0000,0000,,in energy metabolism
Dialogue: 0,0:13:12.40,0:13:15.87,Default,,0000,0000,0000,,that are 16 standard deviations\Naway from normal.
Dialogue: 0,0:13:16.64,0:13:20.68,Default,,0000,0000,0000,,And in Norway, researchers\Nare running a phase-3 clinical trial
Dialogue: 0,0:13:20.71,0:13:24.38,Default,,0000,0000,0000,,on a cancer drug that in some patients\Ncauses complete remission.
Dialogue: 0,0:13:25.80,0:13:27.46,Default,,0000,0000,0000,,What also gives me hope
Dialogue: 0,0:13:28.32,0:13:30.33,Default,,0000,0000,0000,,is the resilience of patients.
Dialogue: 0,0:13:31.97,0:13:33.84,Default,,0000,0000,0000,,Online we came together,
Dialogue: 0,0:13:34.25,0:13:35.93,Default,,0000,0000,0000,,and we shared our stories.
Dialogue: 0,0:13:37.45,0:13:40.22,Default,,0000,0000,0000,,We devoured what research there was.
Dialogue: 0,0:13:40.74,0:13:42.82,Default,,0000,0000,0000,,We experimented on ourselves.
Dialogue: 0,0:13:43.50,0:13:45.87,Default,,0000,0000,0000,,We became our own scientists\Nand our own doctors
Dialogue: 0,0:13:45.89,0:13:47.48,Default,,0000,0000,0000,,because we had to be.
Dialogue: 0,0:13:48.38,0:13:52.12,Default,,0000,0000,0000,,And slowly I added five percent here,\Nfive percent there,
Dialogue: 0,0:13:52.14,0:13:54.37,Default,,0000,0000,0000,,until eventually, on a good day,
Dialogue: 0,0:13:54.40,0:13:56.30,Default,,0000,0000,0000,,I was able to leave my home.
Dialogue: 0,0:13:57.82,0:14:00.40,Default,,0000,0000,0000,,I still had to make ridiculous choices:
Dialogue: 0,0:14:00.57,0:14:04.41,Default,,0000,0000,0000,,Will I sit in the garden for 15 minutes,\Nor will I wash my hair today?
Dialogue: 0,0:14:04.92,0:14:07.35,Default,,0000,0000,0000,,But it gave me hope\Nthat I could be treated.
Dialogue: 0,0:14:07.69,0:14:10.04,Default,,0000,0000,0000,,I had a sick body; that was all.
Dialogue: 0,0:14:10.79,0:14:14.82,Default,,0000,0000,0000,,And with the right kind of help,\Nmaybe one day I could get better.
Dialogue: 0,0:14:15.74,0:14:18.94,Default,,0000,0000,0000,,I came together with patients\Naround the world,
Dialogue: 0,0:14:19.47,0:14:21.22,Default,,0000,0000,0000,,and we started to fight.
Dialogue: 0,0:14:21.86,0:14:25.03,Default,,0000,0000,0000,,We have filled the void\Nwith something wonderful,
Dialogue: 0,0:14:25.70,0:14:27.19,Default,,0000,0000,0000,,but it is not enough.
Dialogue: 0,0:14:28.66,0:14:32.70,Default,,0000,0000,0000,,I still don't know if I will ever\Nbe able to run again,
Dialogue: 0,0:14:32.72,0:14:34.62,Default,,0000,0000,0000,,or walk at any distance,
Dialogue: 0,0:14:34.64,0:14:38.55,Default,,0000,0000,0000,,or do any of those kinetic things\Nthat I now only get to do in my dreams.
Dialogue: 0,0:14:39.14,0:14:42.23,Default,,0000,0000,0000,,But I am so grateful\Nfor how far I have come.
Dialogue: 0,0:14:43.96,0:14:45.44,Default,,0000,0000,0000,,Progress is slow,
Dialogue: 0,0:14:45.46,0:14:46.76,Default,,0000,0000,0000,,and it is up
Dialogue: 0,0:14:47.31,0:14:48.57,Default,,0000,0000,0000,,and it is down,
Dialogue: 0,0:14:49.22,0:14:52.14,Default,,0000,0000,0000,,but I am getting a little better each day.
Dialogue: 0,0:14:54.01,0:14:57.93,Default,,0000,0000,0000,,I remember what it was like\Nwhen I was stuck in that bedroom,
Dialogue: 0,0:14:58.55,0:15:01.50,Default,,0000,0000,0000,,when it had been months\Nsince I had seen the sun.
Dialogue: 0,0:15:03.23,0:15:05.31,Default,,0000,0000,0000,,I thought that I would die there.
Dialogue: 0,0:15:06.96,0:15:08.53,Default,,0000,0000,0000,,But here I am today,
Dialogue: 0,0:15:09.26,0:15:10.54,Default,,0000,0000,0000,,with you,
Dialogue: 0,0:15:11.51,0:15:13.57,Default,,0000,0000,0000,,and that is a miracle.
Dialogue: 0,0:15:16.61,0:15:20.22,Default,,0000,0000,0000,,I don't know what would have happened\Nhad I not been one of the lucky ones,
Dialogue: 0,0:15:20.38,0:15:22.55,Default,,0000,0000,0000,,had I gotten sick before the internet,
Dialogue: 0,0:15:22.100,0:15:24.97,Default,,0000,0000,0000,,had I not found my community.
Dialogue: 0,0:15:25.78,0:15:28.50,Default,,0000,0000,0000,,I probably would have already\Ntaken my own life,
Dialogue: 0,0:15:29.03,0:15:30.94,Default,,0000,0000,0000,,as so many others have done.
Dialogue: 0,0:15:32.09,0:15:35.32,Default,,0000,0000,0000,,How many lives could\Nwe have saved, decades ago,
Dialogue: 0,0:15:35.96,0:15:37.86,Default,,0000,0000,0000,,if we had asked the right questions?
Dialogue: 0,0:15:38.63,0:15:40.78,Default,,0000,0000,0000,,How many lives could we save today
Dialogue: 0,0:15:41.59,0:15:43.75,Default,,0000,0000,0000,,if we decide to make a real start?
Dialogue: 0,0:15:45.20,0:15:48.25,Default,,0000,0000,0000,,Even once the true cause\Nof my disease is discovered,
Dialogue: 0,0:15:48.88,0:15:52.36,Default,,0000,0000,0000,,if we don't change\Nour institutions and our culture,
Dialogue: 0,0:15:52.38,0:15:54.76,Default,,0000,0000,0000,,we will do this again to another disease.
Dialogue: 0,0:15:55.66,0:15:57.65,Default,,0000,0000,0000,,Living with this illness has taught me
Dialogue: 0,0:15:57.68,0:16:00.60,Default,,0000,0000,0000,,that science and medicine\Nare profoundly human endeavors.
Dialogue: 0,0:16:01.15,0:16:03.74,Default,,0000,0000,0000,,Doctors, scientists and policy makers
Dialogue: 0,0:16:03.77,0:16:06.66,Default,,0000,0000,0000,,are not immune to the same biases
Dialogue: 0,0:16:07.57,0:16:09.15,Default,,0000,0000,0000,,that affect all of us.
Dialogue: 0,0:16:11.38,0:16:14.43,Default,,0000,0000,0000,,We need to think in more nuanced ways\Nabout women's health.
Dialogue: 0,0:16:15.12,0:16:19.22,Default,,0000,0000,0000,,Our immune systems are just as much\Na battleground for equality
Dialogue: 0,0:16:19.24,0:16:20.83,Default,,0000,0000,0000,,as the rest of our bodies.
Dialogue: 0,0:16:21.25,0:16:23.60,Default,,0000,0000,0000,,We need to listen to patients' stories,
Dialogue: 0,0:16:24.54,0:16:27.11,Default,,0000,0000,0000,,and we need to be willing\Nto say, "I don't know."
Dialogue: 0,0:16:28.02,0:16:30.38,Default,,0000,0000,0000,,"I don't know" is a beautiful thing.
Dialogue: 0,0:16:31.24,0:16:33.83,Default,,0000,0000,0000,,"I don't know" is where discovery starts.
Dialogue: 0,0:16:35.36,0:16:36.79,Default,,0000,0000,0000,,And if we can do that,
Dialogue: 0,0:16:37.45,0:16:41.14,Default,,0000,0000,0000,,if we can approach the great vastness\Nof all that we do not know,
Dialogue: 0,0:16:41.17,0:16:43.12,Default,,0000,0000,0000,,and then, rather than fear uncertainty,
Dialogue: 0,0:16:43.14,0:16:45.65,Default,,0000,0000,0000,,maybe we can greet it\Nwith a sense of wonder.
Dialogue: 0,0:16:46.34,0:16:47.69,Default,,0000,0000,0000,,Thank you.
Dialogue: 0,0:16:52.10,0:16:53.34,Default,,0000,0000,0000,,Thank you.