What happens when you have a disease doctors can’t diagnose | Jennifer Brea


Translator: Joseph Geni
Reviewer: Camille Martínez 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 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. (Laughter) 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 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. 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. Thank you. Thank you.

35 thoughts on “What happens when you have a disease doctors can’t diagnose | Jennifer Brea”

  1. I understand i have had so many test still no answers unbelievable how doctor's just can't listen to the person they think they no my body better than i do

  2. Sorry about your condition. But pushing your gender agenda a bit hard there arn't ya? Also generalizing pretty hard about the medical field in total with the few bad doctors you've encountered. This does not only happen to women

  3. Yes doctors don't know everything, they try their very best though with what they do know. Sorry you fell through the cracks but doctor bashing isn't beneficial to a solution either.

  4. My wife has this and thank you for bringing it to a big stage and platform. i know its been 2 years sence this is been posted but it still means alot

  5. I believe you but I believe you are still misdiagnosed I have been working on the sicence end and getting closer everyday to finding an answer! I will find it !

  6. I've had it for almost 2 yrs, just found about about ME/CFS recently through online friends. Getting better by the day. Having a hard time pretending to be normal, esp in the brain. Theta Wave Binaural sound helps to calm the brain inflammation. It helps to pretend to be normal in front of your coworkers a little easier.

  7. Even some "psychological" disorders have a biological basis to them. An afflicted body is less resilient to stressors than a healthy body. Basically the psychological component is secondary to the physiological disturbance. ME/CFS is very complex and multifactorial.

  8. This illness is devastating. Trying to make people understand it, is even more devastating.
    So now . . . when I don't feel up to certain things . . . I just withdraw WITHOUT explanation.
    It saves me energy and . . . it avoids frustration.

  9. I went to my doctor with chronic joint pain, hypermobilty, soft and stetchy skin, tiredness, fatigue, bruises, the word went black when a stood up, heat and cold intolerance, and chronic diarrhoea and vomiting. And chronic itchiness and lung problems and problems breathing which I almost died from. She said I was a hypochondriac with too much time on my hands and access to google…

    Charming. I just got diagnosed with hypermobile Ehlers Danlos Syndrome, Postural Orthastatic Tachycardia Syndrome and probable Mast Cell Activation Syndrome. It’s because they do believe in it or didn’t think of it it’s not happening.

  10. Powerful lady. I have M. E and FND. It's a struggle. I wake up everyday like I've done a boxing match. I spent so much of my life asleep. I lost jobs. I can't get benefits because I don't fit certain criteria. I'm doing much better but it's so unpredictable. I can walk so I'm lucky. I do feel drained and also have non epileptic seizures. Luckily I have found an amazing specialist. I filmed my symptoms. A clicking palate finally got me seen by the person I needed to find. Pure fluke. My life is 80 % better but I take hits where I can't do anything. It's brain pathways. Until we map them it's a struggle. No one believed Ms patients before the MRI scanner. Stay strong as upsetting and frustrating it is. It's bloody hard though. Pacing is so hard. I wanna live my life.

  11. I must say I'm extremely impressed by her courage and optimism. I've been in a similar situation for the past 11 years and unlike her, I fail to imagine ever getting better.

  12. Jennifer, you are my hero! I'm SO Grateful for all you and those whom support our cause are doing! Thankyou so very very very much!

  13. Brea has since been partially cured of CFS. Likely she never had ME. I'm glad she's better.

    For those with ME symptoms, here's some places to explore and understand. https://youtu.be/_h3R2MDC6Ws

    HFME.org
    DocumentingME.net

  14. Beastialty is a sin, designer dogs made with designer viruses, you guys are idiots, girls will always chest at everything.

  15. There is solid research pointing to spinal cord glial cell changes. This is perhaps our best hope now, at least for a valid diagnosis if not a treatment.

  16. i feel ya sister, there is only 1 thing worse then being the one going through western science short cummings. is watching someone who loves you, suffer greatly because there is nothing they can do to alieve their loved ones suffering

  17. Got CFS myself, luckily it's not as bad as yourself I'm able to go to work, not that I can be really bothered to. I dont get much sleep, even when I do, I dont feel like I've had sleep. Suffer pains in my muscles. All I want to do is sleep all the time, concentrating and remembering anything academic isn't great. I had glandular fever at the same time as appendicitis, I've never been right since, this was 2 years ago. I like to give off happy view of life but deep down it's so hard and depressing.

  18. I am a 35 year old man and have not been diagnosed with ME/CFS or anything. For years I have suffered from depression/anxiety and so that makes it hard to know if my symptoms are just depression or something else like ME/CFS. I have always suffered from a lack of motivation/energy and sleep issues with my depression. But in the last 3 years my symptoms have gotten worse. I have tried to chalk it up to just getting older, but then I see people my age, and they are quite active and healthy compared to me. I'm not overweight, seem healthy otherwise, but I am just unable to muster the energy to do much anything, despite my depression being less severe than in the past.

    I used to be able to bike, to go out for walks, but now, I can't do any of it. I can't even mow my own lawn or vacuum the floor anymore without becoming severely dizzy and exhausted. I often feel like I am just lazy and pathetic, but it's not that I don't want to do those things, it's that I can't do them because of how much energy it takes out of me. It causes me so much anxiety to know that I won't be able to function afterward. I feel embarrassed to ask people to help me mow, or clean as a young guy supposedly in the prime of my life. It feels like I am being robbed of my independence and it really upsets me.

    A few years ago, even after finding some anti-depressants that helped with my depression, I found that my fatigue remained. I chalked it up to medication side-effects. My anxiety has remained mostly because of the stress of work and trying to find the energy and mental concentration to do all my tasks and to get out of bed in the morning. I feel like sometimes I am unable to focus on anything, and I used to be a very intelligent person, which has been really frustrating. I have also been suffering from severe tinnitus, which I don't know if it is related or not, but it has been such an annoyance to have constant ringing in my ears.

    I noticed about a year ago, that I'd have to stop mowing the grass every 10 minutes or so because I would get shaky and dizzy. I would get so dizzy I could barely walk. If I stand up from a seated position or laying down, I would immediately get so dizzy I had to sit back down or my vision would get dark and I would nearly pass out. I went to my doctor and they changed my blood pressure medications, but that didn't fix the issue. My doctors recently tested me again, and I do indeed have orthostatic hypotension, despite overall having hypertension which I take medication for. I also have an inability to get restful sleep. I always seem to have vivid dreams but no deep sleep and I wake up frequently and just never feel rested. I have migraine headaches (that started about 6 years ago), backaches and body aches that cannot be explained, and they also keep me awake. The headaches have been nearly debilitating at times and require me to take days off of work, which has resulted in me losing a job due to excessive call offs.

    I haven't been told I have ME/CFS, nor have the doctors I have seen mentioned it. They are still testing me, and so far they have only found that I have Vitamin D deficiency. Despite taking Vitamin D supplements, the symptoms and fatigue remain. I have been tested for Lyme Disease/Rocky Mountain Spotted Fever, blood cancers, thyroid issues, anemia, and all came back normal. Some days I feel like I'm going crazy, but I know that what I feel is real. I don't want to tell my doctors that I think this might be ME/CFS, but at this point, I have to wonder if they even know what CFS is to even diagnose me, and a part of me wants it not to be that because it seems like it's pretty much incurable. I'm at a loss as to what to do.

  19. I started a petition, a friend posted it for me from her website I Told You I Was Sick, and have outlined some changes we want to see in the law. http://chng.it/Td7NsKRr I welcome anyone who has been told their illness is in their head to sign this and add your story and please write your Representatives in Congress. We're coming up on an election year so this might be just the time to have our voices heard. We need real change in the way patients are treated in medicine. We need enforcement and stiff penalties for those use "psychogenic/functional/conversion" rhetoric as an excuse to do less than a patient deserves in investigating and treating their diseases. This is a form of discrimination and we need to insist that our government classify it as such and afford us the protections every other protected group has.

  20. I have such similar symptoms and also was diagnosed with conversion disorder! I am constantly exhausted. Almost word for word this same story. I use to travel the world and now i just sit in bed

  21. I ve got a rare debilitating disease that in my country cant be diagnosed is actually really sad.My disease is sad but this is horror

  22. Please watch this share and subscribe / chronic fatigue videos channel
    https://www.youtube.com/channel/UCJMkBBSMaCdN3LHawZWXfQg

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