1
00:00:05,415 --> 00:00:06,858
Hi.

2
00:00:07,622 --> 00:00:08,959
Thank you.

3
00:00:08,983 --> 00:00:10,680
[Jennifer Brea is sound-sensitive.

4
00:00:10,704 --> 00:00:13,849
The live audience was asked
to applaud ASL-style, in silence.]

5
00:00:13,873 --> 00:00:17,240
So, five years ago, this was me.

6
00:00:17,747 --> 00:00:19,752
I was a PhD student at Harvard,

7
00:00:19,776 --> 00:00:21,809
and I loved to travel.

8
00:00:22,472 --> 00:00:25,652
I had just gotten engaged
to marry the love of my life.

9
00:00:27,072 --> 00:00:31,047
I was 28, and like so many of us
when we are in good health,

10
00:00:31,071 --> 00:00:33,102
I felt like I was invincible.

11
00:00:34,477 --> 00:00:38,147
Then one day I had
a fever of 104.7 degrees.

12
00:00:38,758 --> 00:00:40,807
I probably should have gone to the doctor,

13
00:00:40,831 --> 00:00:43,395
but I'd never really been sick in my life,

14
00:00:43,419 --> 00:00:45,772
and I knew that usually,
if you have a virus,

15
00:00:45,796 --> 00:00:48,929
you stay home and you make
some chicken soup,

16
00:00:48,953 --> 00:00:51,266
and in a few days,
everything will be fine.

17
00:00:52,499 --> 00:00:54,336
But this time it wasn't fine.

18
00:00:55,560 --> 00:00:57,097
After the fever broke,

19
00:00:57,121 --> 00:01:00,972
for three weeks I was so dizzy,
I couldn't leave my house.

20
00:01:01,467 --> 00:01:03,661
I would walk straight into door frames.

21
00:01:04,335 --> 00:01:07,295
I had to hug the walls
just to make it to the bathroom.

22
00:01:08,613 --> 00:01:11,270
That spring I got infection
after infection,

23
00:01:11,825 --> 00:01:13,652
and every time I went to the doctor,

24
00:01:13,676 --> 00:01:16,459
he said there was absolutely
nothing wrong.

25
00:01:17,533 --> 00:01:19,158
He had his laboratory tests,

26
00:01:19,182 --> 00:01:21,086
which always came back normal.

27
00:01:21,875 --> 00:01:23,842
All I had were my symptoms,

28
00:01:23,866 --> 00:01:25,796
which I could describe,

29
00:01:25,820 --> 00:01:27,512
but no one else can see.

30
00:01:29,370 --> 00:01:30,593
I know it sounds silly,

31
00:01:30,617 --> 00:01:33,885
but you have to find a way
to explain things like this to yourself,

32
00:01:33,909 --> 00:01:37,533
and so I thought maybe I was just aging.

33
00:01:38,114 --> 00:01:41,667
Maybe this is what it's like
to be on the other side of 25.

34
00:01:41,691 --> 00:01:43,983
(Laughter)

35
00:01:44,808 --> 00:01:46,976
Then the neurological symptoms started.

36
00:01:47,590 --> 00:01:51,301
Sometimes I would find that I couldn't
draw the right side of a circle.

37
00:01:52,325 --> 00:01:55,631
Other times I wouldn't be able
to speak or move at all.

38
00:01:58,330 --> 00:02:00,064
I saw every kind of specialist:

39
00:02:00,088 --> 00:02:03,160
infectious disease doctors,
dermatologists, endocrinologists,

40
00:02:03,184 --> 00:02:04,467
cardiologists.

41
00:02:04,945 --> 00:02:06,861
I even saw a psychiatrist.

42
00:02:07,679 --> 00:02:10,923
My psychiatrist said,
"It's clear you're really sick,

43
00:02:10,947 --> 00:02:13,103
but not with anything psychiatric.

44
00:02:14,045 --> 00:02:16,783
I hope they can find out
what's wrong with you."

45
00:02:18,094 --> 00:02:22,160
The next day, my neurologist
diagnosed with me conversion disorder.

46
00:02:22,842 --> 00:02:24,525
He told me that everything --

47
00:02:25,255 --> 00:02:28,232
the fevers, the sore throats,
the sinus infection,

48
00:02:28,916 --> 00:02:32,246
all of the gastrointestinal,
neurological and cardiac symptoms --

49
00:02:32,715 --> 00:02:35,433
were being caused
by some distant emotional trauma

50
00:02:35,457 --> 00:02:37,063
that I could not remember.

51
00:02:38,069 --> 00:02:40,067
The symptoms were real, he said,

52
00:02:40,546 --> 00:02:42,905
but they had no biological cause.

53
00:02:44,527 --> 00:02:47,136
I was training to be a social scientist.

54
00:02:47,160 --> 00:02:50,392
I had studied statistics,
probability theory,

55
00:02:50,416 --> 00:02:52,990
mathematical modeling,
experimental design.

56
00:02:55,058 --> 00:02:59,051
I felt like I couldn't just reject
my neurologist's diagnosis.

57
00:02:59,599 --> 00:03:01,191
It didn't feel true,

58
00:03:01,215 --> 00:03:04,685
but I knew from my training
that the truth is often counterintuitive,

59
00:03:05,356 --> 00:03:07,953
so easily obscured
by what we want to believe.

60
00:03:08,514 --> 00:03:11,446
So I had to consider the possibility
that he was right.

61
00:03:13,603 --> 00:03:16,118
That day, I ran a small experiment.

62
00:03:16,919 --> 00:03:20,332
I walked back the two miles
from my neurologist's office to my house,

63
00:03:21,229 --> 00:03:25,264
my legs wrapped in this strange,
almost electric kind of pain.

64
00:03:26,475 --> 00:03:28,078
I meditated on that pain,

65
00:03:28,102 --> 00:03:32,121
contemplating how my mind
could have possibly generated all this.

66
00:03:33,320 --> 00:03:35,195
As soon as I walked through the door,

67
00:03:35,219 --> 00:03:36,384
I collapsed.

68
00:03:36,837 --> 00:03:39,619
My brain and my spinal cord were burning.

69
00:03:40,696 --> 00:03:44,467
My neck was so stiff
I couldn't touch my chin to my chest,

70
00:03:45,324 --> 00:03:47,075
and the slightest sound --

71
00:03:47,099 --> 00:03:48,934
the rustling of the sheets,

72
00:03:48,958 --> 00:03:51,223
my husband walking barefoot
in the next room --

73
00:03:51,737 --> 00:03:53,871
could cause excruciating pain.

74
00:03:55,832 --> 00:03:58,415
I would spend most
of the next two years in bed.

75
00:03:59,235 --> 00:04:01,995
How could my doctor
have gotten it so wrong?

76
00:04:02,939 --> 00:04:05,120
I thought I had a rare disease,

77
00:04:05,144 --> 00:04:07,133
something doctors had never seen.

78
00:04:07,926 --> 00:04:09,121
And then I went online

79
00:04:09,145 --> 00:04:11,523
and found thousands of people
all over the world

80
00:04:11,980 --> 00:04:13,600
living with the same symptoms,

81
00:04:14,087 --> 00:04:15,651
similarly isolated,

82
00:04:15,675 --> 00:04:17,132
similarly disbelieved.

83
00:04:17,854 --> 00:04:19,137
Some could still work,

84
00:04:19,161 --> 00:04:21,646
but had to spend their evenings
and weekends in bed,

85
00:04:21,670 --> 00:04:23,737
just so they could show up
the next Monday.

86
00:04:24,364 --> 00:04:26,444
On the other end of the spectrum,

87
00:04:26,468 --> 00:04:28,206
some were so sick

88
00:04:28,230 --> 00:04:30,536
they had to live in complete darkness,

89
00:04:30,560 --> 00:04:33,932
unable to tolerate
the sound of a human voice

90
00:04:33,956 --> 00:04:35,865
or the touch of a loved one.

91
00:04:37,469 --> 00:04:41,471
I was diagnosed
with myalgic encephalomyelitis.

92
00:04:42,554 --> 00:04:46,006
You've probably heard it called
"chronic fatigue syndrome."

93
00:04:46,987 --> 00:04:48,909
For decades, that's a name

94
00:04:48,933 --> 00:04:50,538
that's meant that this

95
00:04:51,578 --> 00:04:52,961
has been the dominant image

96
00:04:52,985 --> 00:04:56,260
of a disease that can be
as serious as this.

97
00:04:57,468 --> 00:04:58,992
The key symptom we all share

98
00:04:59,016 --> 00:05:02,768
is that whenever we exert ourselves --
physically, mentally --

99
00:05:03,296 --> 00:05:05,249
we pay and we pay hard.

100
00:05:05,807 --> 00:05:09,301
If my husband goes for a run,
he might be sore for a couple of days.

101
00:05:09,325 --> 00:05:12,724
If I try to walk half a block,
I might be bedridden for a week.

102
00:05:13,323 --> 00:05:15,578
It is a perfect custom prison.

103
00:05:16,261 --> 00:05:19,009
I know ballet dancers who can't dance,

104
00:05:19,033 --> 00:05:21,206
accountants who can't add,

105
00:05:21,230 --> 00:05:23,788
medical students who never became doctors.

106
00:05:24,421 --> 00:05:26,589
It doesn't matter what you once were;

107
00:05:27,056 --> 00:05:28,846
you can't do it anymore.

108
00:05:29,475 --> 00:05:31,365
It's been four years,

109
00:05:31,389 --> 00:05:33,985
and I've still never been as well as I was

110
00:05:34,009 --> 00:05:37,485
the minute before I walked home
from my neurologist's office.

111
00:05:38,683 --> 00:05:41,878
It's estimated that about 15 to 30 million
people around the world

112
00:05:41,902 --> 00:05:43,156
have this disease.

113
00:05:43,604 --> 00:05:46,867
In the US, where I'm from,
it's about one million people.

114
00:05:46,891 --> 00:05:50,523
That makes it roughly twice as common
as multiple sclerosis.

115
00:05:51,797 --> 00:05:54,539
Patients can live for decades
with the physical function

116
00:05:54,563 --> 00:05:56,697
of someone with congestive heart failure.

117
00:05:57,310 --> 00:06:00,348
Twenty-five percent of us
are homebound or bedridden,

118
00:06:00,927 --> 00:06:04,628
and 75 to 85 percent of us
can't even work part-time.

119
00:06:05,385 --> 00:06:07,389
Yet doctors do not treat us

120
00:06:08,064 --> 00:06:10,002
and science does not study us.

121
00:06:11,116 --> 00:06:14,544
How could a disease this common
and this devastating

122
00:06:15,325 --> 00:06:17,150
have been forgotten by medicine?

123
00:06:19,264 --> 00:06:21,788
When my doctor diagnosed me
with conversion disorder,

124
00:06:21,812 --> 00:06:24,500
he was invoking a lineage
of ideas about women's bodies

125
00:06:24,524 --> 00:06:26,674
that are over 2,500 years old.

126
00:06:27,215 --> 00:06:28,948
The Roman physician Galen thought

127
00:06:28,972 --> 00:06:31,943
that hysteria was caused
by sexual deprivation

128
00:06:31,967 --> 00:06:34,492
in particularly passionate women.

129
00:06:35,125 --> 00:06:37,889
The Greeks thought the uterus
would literally dry up

130
00:06:37,913 --> 00:06:40,340
and wander around the body
in search of moisture,

131
00:06:40,364 --> 00:06:42,260
pressing on internal organs --

132
00:06:42,284 --> 00:06:43,498
yes --

133
00:06:44,648 --> 00:06:47,343
causing symptoms from extreme emotions

134
00:06:47,367 --> 00:06:49,612
to dizziness and paralysis.

135
00:06:50,715 --> 00:06:53,319
The cure was marriage and motherhood.

136
00:06:54,898 --> 00:06:59,458
These ideas went largely unchanged
for several millennia until the 1880s,

137
00:06:59,482 --> 00:07:03,180
when neurologists tried to modernize
the theory of hysteria.

138
00:07:03,764 --> 00:07:05,417
Sigmund Freud developed a theory

139
00:07:05,441 --> 00:07:08,237
that the unconscious mind
could produce physical symptoms

140
00:07:08,261 --> 00:07:10,276
when dealing with memories or emotions

141
00:07:10,300 --> 00:07:12,611
too painful for the conscious
mind to handle.

142
00:07:12,635 --> 00:07:15,514
It converted these emotions
into physical symptoms.

143
00:07:17,460 --> 00:07:19,656
This meant that men
could now get hysteria,

144
00:07:19,680 --> 00:07:22,178
but of course women were still
the most susceptible.

145
00:07:23,448 --> 00:07:27,065
When I began investigating
the history of my own disease,

146
00:07:27,089 --> 00:07:30,134
I was amazed to find how deep
these ideas still run.

147
00:07:31,011 --> 00:07:32,197
In 1934,

148
00:07:32,221 --> 00:07:36,996
198 doctors, nurses and staff
at the Los Angeles County General Hospital

149
00:07:37,020 --> 00:07:38,561
became seriously ill.

150
00:07:38,585 --> 00:07:42,996
They had muscle weakness, stiffness
in the neck and back, fevers --

151
00:07:43,020 --> 00:07:46,374
all of the same symptoms
I had when I first got diagnosed.

152
00:07:46,928 --> 00:07:49,247
Doctors thought
it was a new form of polio.

153
00:07:50,133 --> 00:07:53,064
Since then, there have been more
than 70 outbreaks documented

154
00:07:53,088 --> 00:07:54,249
around the world,

155
00:07:54,273 --> 00:07:56,711
of a strikingly similar
post-infectious disease.

156
00:07:57,419 --> 00:08:00,912
All of these outbreaks have tended
to disproportionately affect women,

157
00:08:01,482 --> 00:08:05,409
and in time, when doctors failed to find
the one cause of the disease,

158
00:08:05,433 --> 00:08:08,572
they thought that these outbreaks
were mass hysteria.

159
00:08:09,115 --> 00:08:12,020
Why has this idea had such staying power?

160
00:08:13,567 --> 00:08:15,363
I do think it has to do with sexism,

161
00:08:15,387 --> 00:08:18,828
but I also think that fundamentally,
doctors want to help.

162
00:08:18,852 --> 00:08:20,622
They want to know the answer,

163
00:08:20,646 --> 00:08:25,537
and this category allows doctors to treat
what would otherwise be untreatable,

164
00:08:25,561 --> 00:08:28,366
to explain illnesses
that have no explanation.

165
00:08:29,079 --> 00:08:31,771
The problem is that this
can cause real harm.

166
00:08:32,382 --> 00:08:35,978
In the 1950s, a psychiatrist
named Eliot Slater

167
00:08:36,002 --> 00:08:40,186
studied a cohort of 85 patients
who had been diagnosed with hysteria.

168
00:08:40,766 --> 00:08:44,763
Nine years later, 12 of them were dead
and 30 had become disabled.

169
00:08:44,787 --> 00:08:48,220
Many had undiagnosed conditions
like multiple sclerosis,

170
00:08:48,244 --> 00:08:50,140
epilepsy, brain tumors.

171
00:08:51,259 --> 00:08:54,984
In 1980, hysteria was officially
renamed "conversion disorder."

172
00:08:55,563 --> 00:08:58,887
When my neurologist gave me
that diagnosis in 2012,

173
00:08:58,911 --> 00:09:01,528
he was echoing Freud's words verbatim,

174
00:09:01,552 --> 00:09:02,703
and even today,

175
00:09:02,727 --> 00:09:07,101
women are 2 to 10 times more likely
to receive that diagnosis.

176
00:09:08,487 --> 00:09:12,486
The problem with the theory of hysteria
or psychogenic illness

177
00:09:12,510 --> 00:09:14,544
is that it can never be proven.

178
00:09:14,568 --> 00:09:17,423
It is by definition
the absence of evidence,

179
00:09:18,192 --> 00:09:19,567
and in the case of ME,

180
00:09:19,591 --> 00:09:23,596
psychological explanations
have held back biological research.

181
00:09:23,620 --> 00:09:26,919
All around the world, ME is one
of the least funded diseases.

182
00:09:27,321 --> 00:09:34,263
In the US, we spend each year
roughly 2,500 dollars per AIDS patient,

183
00:09:34,809 --> 00:09:37,529
250 dollars per MS patient

184
00:09:38,100 --> 00:09:41,307
and just 5 dollars per year
per ME patient.

185
00:09:42,125 --> 00:09:44,206
This was not just lightning.

186
00:09:44,230 --> 00:09:45,994
I was not just unlucky.

187
00:09:46,494 --> 00:09:49,585
The ignorance surrounding my disease
has been a choice,

188
00:09:49,609 --> 00:09:53,733
a choice made by the institutions
that were supposed to protect us.

189
00:09:55,535 --> 00:09:58,406
We don't know why ME
sometimes runs in families,

190
00:09:58,430 --> 00:10:00,895
why you can get it
after almost any infection,

191
00:10:00,919 --> 00:10:04,652
from enteroviruses
to Epstein-Barr virus to Q fever,

192
00:10:05,123 --> 00:10:08,363
or why it affects women
at two to three times the rate of men.

193
00:10:09,058 --> 00:10:11,777
This issue is much bigger
than just my disease.

194
00:10:12,356 --> 00:10:13,539
When I first got sick,

195
00:10:13,563 --> 00:10:15,721
old friends were reaching out to me.

196
00:10:16,180 --> 00:10:19,309
I soon found myself a part
of a cohort of women in their late 20s

197
00:10:19,333 --> 00:10:21,019
whose bodies were falling apart.

198
00:10:22,012 --> 00:10:24,867
What was striking was just how
much trouble we were having

199
00:10:24,891 --> 00:10:26,049
being taken seriously.

200
00:10:26,577 --> 00:10:28,535
I learned of one woman with scleroderma,

201
00:10:28,559 --> 00:10:30,659
an autoimmune connective tissue disease,

202
00:10:30,683 --> 00:10:33,393
who was told for years
that it was all in her head.

203
00:10:33,417 --> 00:10:35,929
Between the time of onset and diagnosis,

204
00:10:35,953 --> 00:10:38,380
her esophagus was so thoroughly damaged,

205
00:10:38,404 --> 00:10:40,649
she will never be able to eat again.

206
00:10:40,673 --> 00:10:42,855
Another woman with ovarian cancer,

207
00:10:43,376 --> 00:10:46,124
who for years was told
that it was just early menopause.

208
00:10:47,188 --> 00:10:48,756
A friend from college,

209
00:10:48,780 --> 00:10:52,675
whose brain tumor was misdiagnosed
for years as anxiety.

210
00:10:54,222 --> 00:10:55,832
Here's why this worries me:

211
00:10:57,125 --> 00:11:00,576
since the 1950s, rates of many
autoimmune diseases

212
00:11:00,600 --> 00:11:02,303
have doubled to tripled.

213
00:11:02,818 --> 00:11:05,758
Forty-five percent of patients
who are eventually diagnosed

214
00:11:05,782 --> 00:11:07,776
with a recognized autoimmune disease

215
00:11:07,800 --> 00:11:10,308
are initially told they're hypochondriacs.

216
00:11:10,783 --> 00:11:13,933
Like the hysteria of old,
this has everything to do with gender

217
00:11:13,957 --> 00:11:15,823
and with whose stories we believe.

218
00:11:16,974 --> 00:11:20,625
Seventy-five percent
of autoimmune disease patients are women,

219
00:11:20,649 --> 00:11:23,828
and in some diseases,
it's as high as 90 percent.

220
00:11:25,076 --> 00:11:27,933
Even though these diseases
disproportionately affect women,

221
00:11:27,957 --> 00:11:29,609
they are not women's diseases.

222
00:11:29,633 --> 00:11:33,321
ME affects children
and ME affects millions of men.

223
00:11:33,345 --> 00:11:35,130
And as one patient told me,

224
00:11:35,154 --> 00:11:36,662
we get it coming and going --

225
00:11:36,686 --> 00:11:40,294
if you're a woman, you're told
you're exaggerating your symptoms,

226
00:11:40,318 --> 00:11:43,776
but if you're a guy, you're told
to be strong, to buck up.

227
00:11:44,676 --> 00:11:48,825
And men may even have
a more difficult time getting diagnosed.

228
00:11:57,419 --> 00:12:00,284
My brain is not what it used to be.

229
00:12:13,914 --> 00:12:15,241
Here's the good part:

230
00:12:16,645 --> 00:12:18,824
despite everything, I still have hope.

231
00:12:19,903 --> 00:12:23,803
So many diseases were once
thought of as psychological

232
00:12:23,827 --> 00:12:26,735
until science uncovered
their biological mechanisms.

233
00:12:27,323 --> 00:12:30,417
Patients with epilepsy
could be forcibly institutionalized

234
00:12:30,441 --> 00:12:35,045
until the EEG was able to measure
abnormal electrical activity in the brain.

235
00:12:35,500 --> 00:12:39,776
Multiple sclerosis could be misdiagnosed
as hysterical paralysis

236
00:12:39,800 --> 00:12:43,112
until the CAT scan and the MRI
discovered brain lesions.

237
00:12:43,945 --> 00:12:45,460
And recently, we used to think

238
00:12:45,484 --> 00:12:48,304
that stomach ulcers
were just caused by stress,

239
00:12:48,328 --> 00:12:51,648
until we discovered
that H. pylori was the culprit.

240
00:12:52,801 --> 00:12:55,695
ME has never benefited
from the kind of science

241
00:12:55,719 --> 00:12:58,029
that other diseases have had,

242
00:12:58,053 --> 00:12:59,717
but that's starting to change.

243
00:13:00,661 --> 00:13:04,202
In Germany, scientists are starting
to find evidence of autoimmunity,

244
00:13:04,226 --> 00:13:06,568
and in Japan, of brain inflammation.

245
00:13:07,406 --> 00:13:10,460
In the US, scientists at Stanford
are finding abnormalities

246
00:13:10,484 --> 00:13:12,380
in energy metabolism

247
00:13:12,404 --> 00:13:15,866
that are 16 standard deviations
away from normal.

248
00:13:16,640 --> 00:13:20,685
And in Norway, researchers
are running a phase-3 clinical trial

249
00:13:20,709 --> 00:13:24,376
on a cancer drug that in some patients
causes complete remission.

250
00:13:25,798 --> 00:13:27,459
What also gives me hope

251
00:13:28,316 --> 00:13:30,333
is the resilience of patients.

252
00:13:31,968 --> 00:13:33,842
Online we came together,

253
00:13:34,251 --> 00:13:35,930
and we shared our stories.

254
00:13:37,449 --> 00:13:40,223
We devoured what research there was.

255
00:13:40,743 --> 00:13:42,820
We experimented on ourselves.

256
00:13:43,496 --> 00:13:45,869
We became our own scientists
and our own doctors

257
00:13:45,893 --> 00:13:47,484
because we had to be.

258
00:13:48,378 --> 00:13:52,117
And slowly I added five percent here,
five percent there,

259
00:13:52,141 --> 00:13:54,374
until eventually, on a good day,

260
00:13:54,398 --> 00:13:56,304
I was able to leave my home.

261
00:13:57,815 --> 00:14:00,402
I still had to make ridiculous choices:

262
00:14:00,568 --> 00:14:04,409
Will I sit in the garden for 15 minutes,
or will I wash my hair today?

263
00:14:04,924 --> 00:14:07,352
But it gave me hope
that I could be treated.

264
00:14:07,693 --> 00:14:10,035
I had a sick body; that was all.

265
00:14:10,789 --> 00:14:14,820
And with the right kind of help,
maybe one day I could get better.

266
00:14:15,740 --> 00:14:18,943
I came together with patients
around the world,

267
00:14:19,466 --> 00:14:21,220
and we started to fight.

268
00:14:21,863 --> 00:14:25,034
We have filled the void
with something wonderful,

269
00:14:25,698 --> 00:14:27,190
but it is not enough.

270
00:14:28,662 --> 00:14:32,699
I still don't know if I will ever
be able to run again,

271
00:14:32,723 --> 00:14:34,620
or walk at any distance,

272
00:14:34,644 --> 00:14:38,553
or do any of those kinetic things
that I now only get to do in my dreams.

273
00:14:39,143 --> 00:14:42,233
But I am so grateful
for how far I have come.

274
00:14:43,955 --> 00:14:45,440
Progress is slow,

275
00:14:45,464 --> 00:14:46,756
and it is up

276
00:14:47,310 --> 00:14:48,566
and it is down,

277
00:14:49,222 --> 00:14:52,135
but I am getting a little better each day.

278
00:14:54,013 --> 00:14:57,932
I remember what it was like
when I was stuck in that bedroom,

279
00:14:58,548 --> 00:15:01,496
when it had been months
since I had seen the sun.

280
00:15:03,226 --> 00:15:05,314
I thought that I would die there.

281
00:15:06,961 --> 00:15:08,528
But here I am today,

282
00:15:09,255 --> 00:15:10,537
with you,

283
00:15:11,513 --> 00:15:13,574
and that is a miracle.

284
00:15:16,606 --> 00:15:20,225
I don't know what would have happened
had I not been one of the lucky ones,

285
00:15:20,377 --> 00:15:22,554
had I gotten sick before the internet,

286
00:15:22,995 --> 00:15:24,969
had I not found my community.

287
00:15:25,777 --> 00:15:28,505
I probably would have already
taken my own life,

288
00:15:29,028 --> 00:15:30,935
as so many others have done.

289
00:15:32,094 --> 00:15:35,318
How many lives could
we have saved, decades ago,

290
00:15:35,957 --> 00:15:37,860
if we had asked the right questions?

291
00:15:38,626 --> 00:15:40,775
How many lives could we save today

292
00:15:41,592 --> 00:15:43,754
if we decide to make a real start?

293
00:15:45,205 --> 00:15:48,248
Even once the true cause
of my disease is discovered,

294
00:15:48,881 --> 00:15:52,356
if we don't change
our institutions and our culture,

295
00:15:52,380 --> 00:15:54,756
we will do this again to another disease.

296
00:15:55,658 --> 00:15:57,652
Living with this illness has taught me

297
00:15:57,676 --> 00:16:00,604
that science and medicine
are profoundly human endeavors.

298
00:16:01,153 --> 00:16:03,744
Doctors, scientists and policy makers

299
00:16:03,768 --> 00:16:06,655
are not immune to the same biases

300
00:16:07,568 --> 00:16:09,147
that affect all of us.

301
00:16:11,377 --> 00:16:14,429
We need to think in more nuanced ways
about women's health.

302
00:16:15,119 --> 00:16:19,221
Our immune systems are just as much
a battleground for equality

303
00:16:19,245 --> 00:16:20,827
as the rest of our bodies.

304
00:16:21,253 --> 00:16:23,597
We need to listen to patients' stories,

305
00:16:24,542 --> 00:16:27,107
and we need to be willing
to say, "I don't know."

306
00:16:28,024 --> 00:16:30,376
"I don't know" is a beautiful thing.

307
00:16:31,235 --> 00:16:33,827
"I don't know" is where discovery starts.

308
00:16:35,365 --> 00:16:36,787
And if we can do that,

309
00:16:37,447 --> 00:16:41,142
if we can approach the great vastness
of all that we do not know,

310
00:16:41,166 --> 00:16:43,118
and then, rather than fear uncertainty,

311
00:16:43,142 --> 00:16:45,653
maybe we can greet it
with a sense of wonder.

312
00:16:46,342 --> 00:16:47,693
Thank you.

313
00:16:52,096 --> 00:16:53,336
Thank you.