What happens when you have a disease doctors can't diagnose | Jennifer Brea
Summary
TLDREste guion narra la experiencia de Jennifer Brea, quien a los 28 años y en plena salud, se enfrenta a una misteriosa enfermedad que la deja casi inválida. Tras ser diagnosticada erróneamente con trastorno de conversión, descubre que padece la enfermedad de la mielite encefalítica, también conocida como síndrome de fatiga crónica. La falta de investigación y el estigma social la llevan a buscar respuestas en internet, donde encuentra a otros afectados y empieza a luchar por la visibilidad y el reconocimiento de su condición. La charla resalta la importancia de escuchar a los pacientes y la necesidad de superar los prejuicios para avanzar en la medicina.
Takeaways
- 🎓 La narradora era una estudiante de doctorado en Harvard, disfrutando de la vida y enamorada, pero se enfermó gravemente con síntomas que no se podían explicar.
- 🌡 Después de una fiebre alta, experimentó mareos y debilidad que le impedían salir de casa, y los médicos no encontraban una explicación física.
- 🏥 Visitó múltiples especialistas, pero solo fue diagnosticada con trastorno de conversión, una etiqueta que atribuyó sus síntomas a un trauma emocional olvidado.
- 🤔 A pesar de su formación en ciencias sociales y estadísticas, lucha con la idea de que sus síntomas pudieran tener un origen psicológico.
- 🛌 Pasó dos años en cama, incapaz de encontrar ayuda médica efectiva y sintiéndose aislada y desconfiada de las instituciones médicas.
- 🌐 Descubrió en línea a miles de personas con síntomas similares, lo que la llevó a cuestionar su diagnóstico y a buscar más información.
- 🏥 Fue finalmente diagnosticada con encefalomielitis mialgica, también conocida como síndrome de fatiga crónica, una enfermedad poco entendida y mal financiada.
- 💉 La falta de investigación y el estigma asociado a la enfermedad han resultado en una mala comprensión y un tratamiento ineficaz.
- 👩⚕️ La historia de la enfermedad está teñida de sexismo y teorías obsoletas sobre la salud femenina, lo que ha llevado a una negligencia institucional.
- 💪 A pesar de las dificultades, la narradora y otros pacientes han demostrado resiliencia, auto-experimentación y la creación de una comunidad en línea para compartir experiencias.
- 🌟 La narradora mantiene la esperanza en la ciencia y el avance de la investigación, que podría finalmente desentrañar los misterios de la enfermedad y mejorar su calidad de vida.
- 🌱 La historia enfatiza la importancia de escuchar a los pacientes, reconocer la incertidumbre y abogar por un enfoque más humano y empático en la medicina.
Q & A
¿Quién era Jennifer Brea antes de enfermarse?
-Jennifer Brea era una estudiante de doctorado en Harvard, amante de viajar y recién comprometida con el amor de su vida.
¿Cuál fue el primer síntoma que experimentó Jennifer después de una fiebre alta?
-Después de la fiebre, Jennifer experimentó mareos intensos que le impedían salir de su casa, incluso se golpeaba contra marcos de puertas y necesitaba abrazar las paredes para llegar al baño.
¿Por qué Jennifer no fue diagnosticada adecuadamente al principio?
-A pesar de sus síntomas, los exámenes de laboratorio siempre resultaron normales y los médicos no pudieron encontrar una causa física, lo que llevó a uno a diagnosticarla con trastorno de conversión.
¿Qué es el trastorno de conversión según el neurólogo de Jennifer?
-El trastorno de conversión es un diagnóstico que sugiere que los síntomas físicos, como las fiebres y los mareos, son causados por un trauma emocional lejano del que la persona no tiene memoria, y que no tiene una causa biológica.
¿Cómo reaccionó Jennifer al diagnóstico de trastorno de conversión?
-Jennifer, entrenada en ciencias sociales, no rechazó inmediatamente el diagnóstico, pero lo cuestionó y realizó un pequeño experimento observando su dolor, lo que resultó en un colapso físico al regresar a su casa.
¿Qué enfermedad descubrió Jennifer que compartía síntomas con ella?
-Jennifer descubrió que sufría de encefalomielitis mialgica, a menudo conocida como 'síndrome de fatiga crónica'.
¿Cuál es el síntoma principal compartido por las personas con encefalomielitis mialgica?
-El síntoma principal es que, después de esforzarse física o mentalmente, las personas pagan un precio alto, experimentando agotamiento severo y post-exertional que puede dejarlas en cama por días o semanas.
¿Por qué la encefalomielitis mialgica (ME) no ha recibido la atención que otras enfermedades han recibido?
-ME ha sido menos estudiada y financiada debido a la persistencia de teorías psicológicas como la histeria, que han desviado la atención de la investigación biológica y han llevado a una falta de reconocimiento y tratamiento adecuado.
¿Cómo afecta la encefalomielitis mialgica a la vida diaria de Jennifer y a las de otros afectados?
-La vida de Jennifer y de otros afectados se ve drásticamente afectada, con muchos incapaces de trabajar o realizar actividades básicas, y algunos incluso confinados a la cama o en la oscuridad debido a la intolerancia a los sonidos y el tacto.
¿Qué cambios han ocurrido en la investigación y el enfoque hacia la encefalomielitis mialgica en los últimos tiempos?
-La investigación está comenzando a cambiar, con hallazgos en Alemania sobre autoinmunidad, en Japón sobre inflamación cerebral, y en EE. UU., científicos en Stanford han encontrado anomalías en el metabolismo energético, y en Noruega se llevan a cabo ensayos clínicos con medicamentos para el cáncer.
¿Cómo ha sido la esperanza y la resiliencia de Jennifer a pesar de su enfermedad?
-Jennifer ha encontrado esperanza a través de la ciencia que comienza a descubrir los mecanismos biológicos de la ME, y la resiliencia de los pacientes al unirse en línea, compartir historias, y convertirse en sus propios científicos y médicos.
¿Qué mensaje importanteJennifer desea transmitir sobre la salud de las mujeres y la investigación médica?
-Jennifer aboga por una reflexión más matizada en la salud de las mujeres, escuchando las historias de los pacientes y reconociendo la importancia de admitir la ignorancia ('I don't know') como punto de partida para el descubrimiento y el progreso en la medicina.
Outlines
😷 La enfermedad y la sensibilidad al sonido
Joseph Geni narra su experiencia personal desde su vida activa como estudiante de doctorado en Harvard hasta su diagnóstico de 'enfermedad de conversión'. Describe cómo una fiebre alta desencadenó una serie de síntomas neurológicos que lo dejaron incapacitado, y cómo su médico atribuyó sus síntomas a un trauma emocional olvidado. Geni, con formación en ciencias sociales, reflexiona sobre la posibilidad de que el diagnóstico pudiera ser correcto, pero luego descubre que su condición es compartida por muchas personas en todo el mundo, lo que la lleva a cuestionar la validez de su diagnóstico.
🤒 La ignorancia médica y la etiqueta de 'enfermedad rara'
El relato continúa con la lucha de Geni por encontrar respuestas y la revelación de que su enfermedad, conocida comúnmente como 'síndrome de fatiga crónica', es en realidad una condición grave y poco entendida llamada 'encefalomielitis mieliítica'. Expone las estadísticas sobre la prevalencia de la enfermedad y la falta de atención médica y científica hacia ella. Geni explora la historia de la enfermedad y su asociación con teorías obsoletas sobre el cuerpo femenino, que han llevado a la estigmatización y la falta de reconocimiento de la enfermedad.
👩⚕️ La discriminación de género en la atención médica
En este párrafo, Geni analiza cómo la discriminación de género y las creencias obsoletas sobre la 'histeria' han afectado la forma en que se diagnostican y tratan las enfermedades autoinmunes, especialmente entre las mujeres. Destaca la importancia de escuchar las historias de los pacientes y de ser dispuestos a admitir la ignorancia médica en áreas donde la ciencia aún no ha llegado. La narración incluye ejemplos de mujeres que han sido mal diagnosticadas debido a prejuicios de género y cómo esto ha tenido consecuencias devastadoras para su salud.
🌱 La esperanza y la resiliencia de los pacientes
Geni concluye su historia con una reflexión sobre la esperanza y la resiliencia de los pacientes con enfermedades poco comprendidas. Muestra cómo la comunidad en línea ha sido una fuente de apoyo y conocimiento, y cómo los pacientes se han convertido en científicos y médicos de sí mismos. A pesar de los desafíos, Geni expresa su gratitud por los pequeños avances que ha logrado y la creencia en que, con el tiempo y el apoyo adecuado, es posible mejorar. La narración enfatiza la importancia de cuestionar las instituciones y la cultura médica para prevenir que se repitan los errores del pasado.
Mindmap
Keywords
💡Miastenia crónica
💡Trastorno de conversión
💡Historia de la enfermedad
💡Sensibilidad al sonido
💡Escepticismo médico
💡Investigación científica
💡Autoinmunidad
💡Inflamación cerebral
💡Metabolismo de energía
💡Psicología versus biología
💡Comunidad en línea
Highlights
Jennifer Brea describes how she went from being a healthy, active PhD student to suddenly falling ill with severe symptoms that doctors could not diagnose.
After experiencing unexplained neurological symptoms and consulting multiple specialists, Jennifer Brea was diagnosed with conversion disorder, a diagnosis she questioned based on her own scientific training.
Jennifer Brea conducted a self-experiment by walking home from her neurologist’s office to explore if her symptoms were indeed psychological, only to collapse from severe pain and neurological distress.
Brea was later diagnosed with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), a debilitating disease that severely limits physical and mental exertion.
ME affects an estimated 15 to 30 million people worldwide, yet it is one of the least funded and least understood diseases, particularly in the United States.
Brea discusses the historical and ongoing medical bias against diseases that predominantly affect women, such as ME, where symptoms are often dismissed as psychological.
She highlights the link between the historic concept of 'hysteria' and contemporary misdiagnoses, emphasizing that this outdated thinking still affects modern medical practices.
Brea references historical cases of disease misdiagnosis, including outbreaks that were dismissed as mass hysteria despite causing significant illness and disability.
ME patients often face skepticism and disbelief from medical professionals, which can delay proper diagnosis and treatment, causing further harm.
Jennifer Brea shares that autoimmune diseases and conditions that predominantly affect women are frequently under-researched and under-funded, despite their prevalence and severity.
She notes that many diseases previously thought to be psychological, like epilepsy and multiple sclerosis, were later understood to have clear biological causes once the appropriate technology or understanding was developed.
Recent research in various countries is beginning to uncover potential biological mechanisms behind ME, including brain inflammation, autoimmunity, and metabolic abnormalities.
Despite the challenges, Brea expresses hope due to the resilience of patients and the growing scientific interest in ME, highlighting the importance of patient advocacy and community.
She argues that medical science must recognize its own biases, especially towards diseases that predominantly affect women, to avoid repeating historical mistakes.
Brea concludes by emphasizing the importance of embracing uncertainty in medical science as a starting point for discovery, and the need for a more patient-centered approach to healthcare.
Transcripts
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.
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