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

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.

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

  1. Please someone answer this… if one believes another to be hypochondriac and mental, exactly what could ever be shown to you to believe otherwise? Nothing. Nothing but tests, I’m sure. Now, what if there are no tests for it? …because it’s not been discovered what’s wrong in order to make a test for it? What happens to those telling you the truth to which you won’t believe?!

  2. My neurologist told me I had a dissociative disorder and that was the problem.
    Nothing else, just here’s the problem, we have no way to help you. See you in 6 months for a check up in your epilepsy.
    Cool. I’ll just sleep for the next 6 months I guess.

  3. I am 36 years old. I've been dx with lupus SLE since two years after I fainted and got admitted to the hospital. I am always in pain there good days that my legs allow me to walk with a walker or a wheel chair. I can't enjoy the sun anymore. Doctor from Um hospital the Emergency not so long ago told me never to cometo the ER or get a Ct scan. I wanted 😢. But I am not allow to. crying or get upset. If do my priosion flares up I end up been in bed for weeks. I hope they find a cure for all type or autoimmune diseases.

  4. Thank you for doing this! Doctors are so often to diagnose us incorrectly… especially with neurological disorders. Dealing with it now. My rheumatological disorder (Seronegative RA with neurological features) went diagnosed for over twenty years. I have two degrees, including a masters of professional counseling. I hurt all over, and my brain has stopped working. The brain thing is the worst! Keep fighting… It will eventually be diagnosed! Our blood tests and other diagnostic tests are not as good as we give them credit for. This happens so much more than most know, especially doctors!

  5. This made me cry because I've periodically gone to the doctor for the past year about symptoms much milder than but similar in type to what she describes. Two weeks ago, I walked my friend 1/8th mile to his bus stop and back, and was bedridden for two days. I thought I must have Munchausen syndrome of that I must be making it up. My family doesn't understand why I no longer shower or brush my hair. I'm told that it's my diet and that I don't exercise. Two years ago I could run a half marathon, but now if I exercise I won't be able to attend class or study for a week (which I'm only able to do by taking 400-1200 mg of caffeine every day).

    Officially, there's nothing wrong with me.

  6. I came back… Be sure to check out Hashimoto's Thyroiditis, especially if you start developing a goiter. It is many times misdiagnosed as Chronic Fatigue Syndrome or Fibromyalgia, and it's a major cause of "Fog" as well. Hard to diagnose, because so many times the bloodwork is completely normal. So many of these issues take so long to diagnose, because everything has to be ruled out before they can be diagnosed. Based on my GRE scores, would have liked to be working on a doctorate. However, things don't happen like we think they will, and most doctors aren't as smart. It's sad when they keep doing the same blood work time and time again and won't do what they need to do to truly diagnose the problem.

  7. My husband has had fairly severe CFS for the past decade, after a bout of untreated HSE. He can usually work three days a week, but is bed-bound the rest of the time. Believe me, he’s not treated any better by doctors than women are.

  8. Thanks for sharing your personal journey. You are such a beautiful person. I pray you have more better days. God bless you

  9. Not saying everyone with CFS has this, but I was just diagnosed with POTS. It’s basically CFS but with an explanation and physical evidence. Check your resting heart rate, and then check your standing heart rate. If your heart rate increases by >30 bpm, and you have the symptoms associated with CFS, it’s more likely you have POTS

  10. Does anyone know how to reach her? I would like to ask her if she has any root canals, or teeth pulled at anytime in her life? If so, she needs the root canals pulled, and any previous dental work 3d beam scanned and looked at for infections. Please reach her and ask….

  11. This woman is incredible! Watched the movie she made. Imagine being so sick and still inspire so many lives and politicians. Hopefully people will listen and invest more money to find a solution for this disease. Nothing but respect for Jen. And also her husband.

  12. I also have conversion disorder as well it is upsetting it changed my life forever not knowing if I will not walk or loss my vision or have a seizer

  13. I am going through an illness that no doctor can understand I've also travelled to another country to see doctor even they dont understand my illness I am fading away ..

  14. I have a mild-form of chronic fatigue. Every time I have trouble going to sleep and waking up and everytime I leave home for a walk I usually get an unexplained dizziness. Sometimes when everything seems fine after 6 minutes of walking, an almost unbearable dizziness occurs and I have to sit down somewhere so I don't fall over and hit my head. I always try to do 60-90 minutes of walking to push myself, but I know that if I'm going through a very stressfull period of time I might collapse on the sidewalk with a sudden seizure.
    Honestly, I'm one of those people who've given up on the medical system. I don't want to know what I have. That is so much work, going through the horrible ill-treatment of medical practitioners that I just prefer to go on living until something comes up.
    The best way I know to treat this, if it is mild, is to continuing doing what you love to do. If I were to stop reading for a while I'd not read anything for weeks or months, because reading would tire me down too much. The best solution is for me to try reading everyday and encourage routine. The same with eating pasta and rice. If I stop cooking those I'm going to be months eating home-made hamburgers. The best way to treat it is to encourage routine and do what you love.
    I like to put my brain to think and proove, because it's such a great brain. But I don't like being pushed by others to do this or that. It really hurts. Physically and afterwards emotionally. And I know that if I'm to be pushed around I might have hallucinations, go psychotic, even epileptic. So it's not worth it.
    If your brain wants you to work, work hard, but to your own rules, always strive for independence. Other people who downcasted you will be amazed how you're able to do in 3 months more than in 3 years with them. Do what you want not what others want. Do it motivated, win, continue thriving.
    This is the future of humanity. With so many different autoimmune disorders appearing and older ones sky-rocketing I think humans just want to be and to work to and with those they love. Homeschooling has sky-rocketed from 13 000 to 2.3 million. People are different nowadays, they want liberty to achieve expression and they want it now.
    A lot of these people with a milder form of chronic fatigue just want to find and express themselves, but they can't, they're stuck and forced to swim against the current.
    Just don't swim against the current. If you have something in your head. Just do it! Don't be afraid of failure, don't be afraid of an accident, don't be afraid of losing. It's how you're able to lead your life that matters. Not someone else's plans or a systems constraints. You choose what you want to do.

  15. I live with this disease and know exactly how much this public talk would have cost Jennifer in the following days. All the more appreciation to her for making the effort.

  16. Brave of you to talk Jennifer. I wonder if patients can get help from the studies done by Dr. Ron Evans, regarding a so called "training pill", where one gets some of the benefits from exercise, with a pill, when you cannot exercise? I think this might help ME patients get energy and would perhaps be able to start to be able to exercise more! Have you heard about this? I understand many people are against these studies because they say most people need to exercise, and that it´s a waste of money to spend money on studies that most of the population doesn't need. But they don´t think about other patients, such as those suffering from ME and other diseases which makes it hard to exercise… What do you think Jen Brea?

  17. The TRUTH is, if your disease ISN’T real, I don’t want to be around you because you just want excuses. If it IS, real, I don’t want to be around you because you become a burden that I can’t assist with. My friends with wheelchairs or canes or braces have very specific needs that I know how to cater to. I cannot cater to a disease that is 100% symptom and 0% cause.
    Just a little honesty for you. Maybe you know someone like me and this would help you understand how their mind might work.

  18. A normal conversation
    https://chrome.google.com/webstore/detail/threelly-ai-for-youtube/dfohlnjmjiipcppekkbhbabjbnikkibo

  19. I am going through this right now. I was treated for depression and anxiety for over a decade. I’ve been on over 40 different psychiatric drugs and done TMS therapy. It didn’t work well, most of the time, the treatments actually made me worse. I think I am depressed, but depressed from whatever this illness is and how it has limited me. All of the missed opportunities. Some doctors who are willing to dig a bit deeper have found some antibodies, but nothing that should be causing symptoms this severe. A couple of years ago, they were afraid that I had lymphoma. Now I am being treated for lyme disease, but since I live in Texas where lyme is very rare, and hardly am the outdoors type, I’m doubtful that this is the actual problem. My blood always looks like I have a full blown infection, but I don’t get fevers. I have some autoimmune markers too, but not enough to fit into an actual diagnosis. It’s not all in my head. My joints ache, some days I can hardly eat, I vomit almost everyday, my skin feels like it’s sunburned or crawling, pain shoots up my legs from my feet, my brain feels like it’s melting or too heavy for my neck to hold up, I get migraines, I forget words or how to count change at work. Any quiet room for a few minutes and I can doze off even if I’ve gotten more than enough sleep the night before, but when I actually need to go to sleep, I am too restless and achy to get comfortable. I get infections way too often for how much I isolate, and how clean I stay, so I’m sure that my immune system is compromised. In my late 20’s, I started getting diagnosed with things that don’t usually affect people until their 60’s-70’s, despite that I’ve always eaten fairly healthy, never smoked, and exercised when I had the energy.

    I’m not seeking attention, most of my family and friends don’t speak to me, I’m used to being alone now. People think that I’m just lazy, which I hate hearing. I want to do things. I am just frustrated. I want to feel well and have the energy and vitality to live a normal life. That’s all. I shouldn’t be here in my early 30’s, only able to work part time, then absolutely exhausted the rest of the time. People my age are raising children and building their lives on top of a full time job. I have the energy to shower and keep myself and my house somewhat clean. I feel like I’m always doing only the bare minimum to get by. I’m better than I was a few years ago, but that’s only thanks to being on some powerful stimulant medicine from my psychiatrist. I’m angry that if I fail treatment for the lyme, the next approved treatment protocol is talk therapy, antidepressants, and gabapentin to make you “comfortable” and complain less. Been there, done that.

  20. You are amazing and thank You for what You are doing. The only question that comes to my mind – what if body-oriented psychotherapist or psychotherapist specializing in psychosomatics could help? It feels like You felt stigma, when being sent to psychiatrist, but any of us can suffer from major or minor emotional (or other) disorders. And if that psychiatrist told that You are not his client, – could that be because of that mental states caused by emotional trauma mostly requires psychotherapy and that's not so much about drugs? One scientist that wrote about psychological traits of people suffering from diabetes raised a hypothesis: what if long term psychotherapy could help? There's a little number of people who take a long-term psychotherapy course with a competent in that field psychotherapist… I often see that my body reacts to my emotional and mental state. But I can't state anything about You or other people, just sharing some thoughts, that come through my mind.

  21. Please check out BadBugs.org Two medically ignored gut parasites can trigger severe symptoms including chronic fatigue, intestinal distress, weight loss, food intolerance to carbs and other distressing symptoms. Ignored by the medical profession this common infection nearly killed me.

  22. Hello, I want to reach out Jennifer Brea. I really want to help Jennifer Brea in this regard. If Jennifer contact me, I will help her to suggest the cure or remedy for this diseases. She can email me at [email protected]

  23. Guys she's healthy again
    https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71

  24. I am also chronically sick and trying to get to the bottom of it. What is puzzling is why a doctor would think that symptoms are not real. There is nothing to gain by being sick. It is horrific to loose your life to illness nobody understands or knows what it is

  25. Ugly hair do. Very distracting. Cannot think about what is said. Doctor always says, “I can’t find anything wrong with you, therefore it must be psychosomatic.” I ask what’s that? “You just think you’re sick. You are not really sick.” It took 38 years of excruciating pain to finally find out what was wrong. Then it took a 4 hour and 20 minute operation, and about 2 months of recovery, and the pain was gone.

  26. To those who don’t know: Jen has made a complete recovery, after they discovered that her ME symptoms were due to compression in her brain stem.

    The rest of us, the millions missing, are still waiting for proper medical care. I’ve been stuck in bed for five years and counting.

  27. Jen is now in remission after surgery on her spine! Just goes to show the root cause of ME is different for everyone, but doctors don't test for things like thyroid/adrenals, Lyme, mould sensitivity etc. https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71?mc_cid=45c20fb8c0&mc_eid=%5BUNIQID%5D&fbclid=IwAR0BDRtqrI3b387qthSrX6nGSl1Ee7XpeNWufD-IBHgaQWoik5DFJ5MpeE8

  28. I can clearly remember a pediatrician saying to my mom "She's kind of a hypochondriac". That has stuck with me my entire life and I have always convinced myself that I was overreacting and would have so much anxiety about telling doctors about any symptoms I was having. Last year I went to my doctor because I had been feeling terrible for weeks and walked out with a diagnosis of acid reflux. I thought "I must be so over dramatic if I'm feeling so terrible about acid reflux." A few days later I was in the ER in diabetic ketoacidosis and found out I have Type 1 Diabetes. Believing people when they say that they do not feel okay is so important. Thank you for shedding light on this.

  29. M.E. needs it's own Michael J. Fox to gain some traction like he's done for Parkinson's disease. Although that statement is kinda sad.

  30. Apparently brain scans of different varieties have all found that ME patients (or all folks sharing the same symptoms) have abnormalities in brain-function: Apparently Brain scans of different varieties have all found that ME patients (or all folks sharing the same symptoms):

    https://me-pedia.org/wiki/Brain_imaging

     So anyone suspecting they or someone they know has this disorder should mention the research to their doctor, and request such a scan. This can then be used to back up your claim for insurance and such.

  31. Super power Woman you is Jen💪 I have suffer for many symptoms, for about 7 mounts, im from Denmark, and all the doctor says almost, Im metal ill, its so wrong! I also get high fever from a herrible viral infection, my brain is diffently not what it use to be! C-vitamin has a effect, I hope it will contenue, becourse this desease killing me, and suicide thoughts is there often.. But also hope!

  32. I’m a neuro nurse who’s (secretly) suffering with mild/moderate CFS/ME, and I almost feel like a secret/double agent. I’m lucky I’ve gotten better and manage to work some now (although it costs me a lot and cuts down on my social life/life in general). The brain fogs are especially challenging. But what’s been really devastating as a nurse and ME sufferer, is seeing how incredibly unfair gender bias in healthcare is towards women, and how much harder women have to fight to have their health taken seriously (myself included). For years I was told my fatigue was depression, and I probably believed so too — trying everything from CBT to group therapy to several SSRI’s without any real effect, and blaming myself when it didn’t make me better. It’s so painful working and seeing women being admitted with chronic headaches or numbness or fatigue or fits and being dismissed by the (often middle aged, white) neurologists when their first rounds of tests come back normal. They’ll even joke if it’s a young woman that she probably has some buried trauma and it’s most likely a "functional disorder". It just makes me want to quit my job. Yes – sometimes it is, but that doesn’t make it any less real or difficult. And sometimes, later, the young women will be re-admitted and they’ll reluctantly do another round of tests and discover epileptic activity during the EEG or white scars on the MRI or intercranial hypertension — and I almost feel relief. I remember one young female patient who was extremely anxious and skittish, and the attending who was very clear he thought it was psychosomatic. And then the MRI revealed a malign tumor. I also remember a young women who we ran dozen of tests on, several times, whom all came back negative and she was diagnosed with "functional disorder". A few weeks later she committed suicide. I know I’m not directly responsible, but I still feel a pang of guilt whenever I think of her. I so hope one day we discover a biomarker of CFS/ME and other unexplained diseases like fibromyalgia. And I hope one day the stigma of diseases like that, and psychosomatic ones, become a thing of the past. I also think it’s essential all health care workers educated themselves on "unexplained diseases" and gender bias in medicine. For instance I recommend "Is medicine killing young women?" by Dusenbery, "How doctors take women’s pain less seriously?" by Fassler, and "Your pain is not real: How doctors discriminate against women" by Marthe.

  33. Thank you for helping me learn more about my chronic fatigue syndrome(most folks think its only extreme tiredness).Two hours of intense energy spending (aka laundry or running errands) will put me in bed for a week or more.I also have rhuematoid arthritis and fibromyalgia( I have had all of these since I was 12 years old ).I was hit by a car when I was 11 yrs old.

  34. It has been one year to this day that I had to stop working due to a mysterious illness. We think it is ME. This video gives me hope. Thank you.

  35. i feel so bad for her, the medicine of the west has become a ivorytower on cloud 7, wich thinks they know everything and ignore the rest…. plus the time they take for patients get lesser and lesser, its more like work the people down, then to help them…. only can hope in future they can help those poor people..

  36. At 19 for just over a year I've been so tired I rarely get out of bed and a trip to the grocery store or 15 minutes in a swimming pool make me need to sleep for hours, over the last couple months I haven't been able to eat because I vomit and feel sick, some days I sleep 18 or more hours and some nights I can't sleep at all reduced to tears because I'm exhausted, the muscle pain makes it hard to even want to reposition myself often, I've started blacking out when I stand and at 3 am I laid in bed sobbing over this video because all the tests they run keep coming up negative and I'm just being told it's all in my head but I want so badly to get up… its hurting my relationships and future

  37. This happened to me. I was treated terribly while trying to get a diagnosis for what turned out to be a rare disease. I couldn't even stand up for long (in my mid 30s) but was told I was exaggerating, that it was anxiety. I started to doubt my own sanity. I ended up using the internet to figure out the diagnosis on my own, asked for the correct tests, and it turned out I was right. I have Mastocytosis. Now I dread going to any doctor because I fear they'll treat me that way again. Doctors need to be aware of this problem.

  38. My lab tests don’t come back normal. I’m regularly anemic and look like I have a full blown infection because my white count is so high. I have anti-nuclear antibodies (antibodies that attack your own cells). I was still only treated for depression. I finally got diagnosed with lyme disease, and I have many autoimmune markers, but they’re not sure what autoimmune disease I have. It attacks my lungs, thyroid, kidneys, GI tract, heart, and I just started treatment for pancreatic insufficiency. All of these show in my blood tests and imaging tests, so it’s not “just in my head”. My immune system is weak, I get frequent respiratory and urinary tract infections. The fatigue is so intense, I can doze off in noisy public places now, and I’m afraid I’ll doze while driving, even though I usually get more than 8 hours of sleep. I wonder how doctors missed all of this for half of my life and just blamed it on depression and anxiety, even after every antidepressant treatment failed. Dealing with all of this will make a person depressed though.

  39. im undiagnosed with chronic fatigue. im not dealing with it anywhere nearly as bad as jennifer brea is but i know it isnt normal. i leave to go grocery shopping for 3 hours and when i come home im so tired i dont have energy to sit. i have to sleep an hour usually to gain back my energy. last weekend i didnt do anything other than clean my room while this weekend i did a lot of cooking and laundry with minimal rest. my energy varies and sometimes i feel fine. other times i feel like im coming off a bad cold.

    doctors have been understanding but my family hasnt. my dad says he has the same problem but he does very physical difficult work for 10 hours a day that i couldnt manage. my mom who has fibro keeps telling me to give up on diagnosis or that its just something like a gluten intolerance. unfortunately i may have to give up for now. my first doctors visit came up to $1k for just a few tests. i wish i knew what was going on and i wish people took it seriously despite not having a known cause.

  40. I remember watching a news report about a group of people with CFS living in Wimberly Texas. The news called the illness the “Yuppy disease” implying that only people with money could afford the luxury of this illness. Years later I was diagnosed with Fibromyalgia and CFS (ME).

  41. "It doesn't matter what you once were; you can't do it anymore."

    Yep, and I've been living that life longer than desired.

    So has my Dad.

    The disbelief thrown at people with CFS/ME is bad enough for women, try being a guy and having it.

    My Dad was a senior Navy officer when he got it.

    Imagine the disbelief in that environment.

  42. If it wasn't such a tragic thing that would be hilarious, one day the Psychiatrist says, nope, this is not psychiatric & the next day the neurologist says, yep, this is psychiatric.

  43. I remember when I first saw this talk, about three years ago and I was completely shocked about this illness.

    I know now that I in fact do have this illness.

  44. 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

  45. 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

  46. 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.

  47. 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

  48. 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 !

  49. 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.

  50. 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.

  51. 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.

  52. 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.

  53. 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.

  54. 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.

  55. 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!

  56. 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

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

  58. 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.

  59. 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

  60. 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.

  61. 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.

  62. 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.

  63. 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

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