A live audience applauded ASL-style in silence and shook their hands vibrantly. The speaker was sound-sensitive as she was diagnosed with a disease which no person can instantly visually notice. What’s that medical diagnosis that some heartless people laugh at? Hypocondriacs? Fibromyalgia? No, you’re far off. Fibromyalgia is no laughing matter, and neither is this beaming light of hope named Jennifer Brea. So again, what disease does she have?
“The Roman physician Galen thought that hysteria was caused by sexual deprivation in particularly passionate women…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.” “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 you.”
As a medical student at Harvard, her seated poised body emanates confidence. You begin paying attention as she mentions a medical condition which you or a loved one may have. Heart attack, stroke, and cancer are many “basic” diagnosis that plague humans. Yes, all in a day’s work for a doctor. But what if you don’t fit one of those boxes. Maybe you have an undiagnosed condition where there isn’t a valid answer and you still don’t have closure. Going to a NORD physician’s website and trying to diagnose yourself? What are you trying to do?! Choose a disease like a needle in a haystack. Then a culmination of physicians haven’t been able to properly diagnose you–so what happens when you have a disease doctors that can’t diagnose? More on this soon…
As she speaks you go back to wondering, did she obtain her PhD and become a physician? Did she take the Hippocratic Oath, “Do No Harm”? As she finished her TED Talk, you’ve answered your own question. She did NOT do any harm to humanity, if anything; she’s raised the bar. Jennifer Brea became the founder of #MEAction (an online organizing platform for ME patients), she also directed and produced, Unrest, a 2017 Sundance Film. What’s exactly is ME and what does it all mean? It’s also known as chronic fatigue syndrome (myalgic encephalomyelitis), a disease in which 15-30 million people around the world are estimated to have.
So what if you are like Jennifer Brea and can’t be properly diagnosed? Sleeping out your disease isn’t the answer. Take a snapshot picture of history and the actions that define the success of humankind rely on imperfect decisions. Some have metaphorically taken a bullet at the expense of others. Immersing oneself in a single physician’s decision may not be the answer, and quite frankly; it may continue to injure you. If at first you don’t fix your ailment, try again with another physician. Jennifer Brea sure tried it. That may be the answer. You owe it to yourself. You owe it to your mind. I’ll give you an example. Let’s say your signs and symptoms include dizziness, upper shoulder pain, ringing in the ears, nausea, vomiting, and an excruciating chronic headache. Even loud noises annoy you more than your significant other. You go to an ER physician, where they take your vital signs, look at your heart, scan your head, maybe run some blood tests and everything comes back fine. Your prescribed some Motrin, then get booted out for a cardiac arrest patient that the paramedics are bringing in. You’re still left uncured. Like the ER physician, you say “next!” and begin pounding down espresso shots as if the caffeine was your bitter sweet answer to your headache. To no avail.
A few weeks later, you set up an appointment with your primary physician and they diagnose you with migraines. From Botox, Topamax, and even Zofran; they throw every pill at you as if you were a dart board. Talk about the failure of western medicine. Pharmaceutical medications? Let’s clean that bib from all those crumbs cookie monster. You felt like you were eating Tic Tacs! So you forget about the West and travel to the East. Eastern medicine still didn’t help! Now you’re at the point where a magnum revolver, inner peace, nirvana, paradise, or Zen seem to be your answer. Hitting the fork in the road you take neither as you found your own piece of mind thru the internet. Hundreds of hours later. A click here and there…Boom! You forgot to check with your dentist! The right doctor, or specifically dentist, diagnosed you with TMD. Your teeth were grinded down at their pressure points and you were given a mouth guard. Finally the correct answer! No more need for an ASL-style applause.
It’s sad really. So many diseases that abound and we play a lottery to see what we get. The sad part is how there’s misdiagnosed and undiagnosed conditions that aren’t being studied. We seem to be a live experiment where trial and error still seem like it’s a route to take. We expect some mad scientists to press the right buttons. Is it more logical for us to be pressing the right buttons? We hope for others to give us the answers, when maybe they themselves are too busy looking for their own answers. After all, we are all humans. Psychological egoism seems to be quite popular. It would be amazing to see the headlines when “altruism is trending”. As time continues some have literally taken a bullet to their heads because they couldn’t take the pain any longer. Like a product, improvement on health takes time. Progress is slow, but there is hope in which one day we can say “progress for healthcare has picked up”. Who knows, maybe you are the one that takes the lead in change. If you don’t, please don’t go on blaming others. As time ticks by people are suffering, dying, or enduring hardships that are preventable. Advances in technology is the answer towards diagnosing such rare diseases (this will be for another post). We are not endorsing the idea of using the internet to diagnose yourself, but we are advocating the idea to find a healthcare medical professional that will be your advocate.
More importantly, you are your own advocate in life. Knowledge, experience, and perception by world leaders in healthcare seem to be at a standard that’s currently unacceptable. Welcoming driven people with unique ideas on different wavelengths can fill such void. In a world where medical negligence is apparent, the answer shouldn’t be found in a courtroom. That is a subpar excuse. The answer should be preventive and on a large scale. You and I are held responsible for our own ambition, ideas, and actions. We just have to make sure we reduce the likelihood of getting hurt along the way. Here’s an analogy. The mind is the front cover of the book. What do people see? The figurative heart is the back cover of the book. What will you reveal to those close to you? Stuck inside the cover is a 100-page book that outlines your body. Five fingers, five toes? That already sounds like a 100% perfectly good book. As time wanes, you break bones, lose fingers, toes, get arthritis, gain visceral fat on your tummy, etc. Yes, you lose some pages in which you cannot recover. Never to get back. With one exception. You can become a book with 3 pages left but you will still be left with something. If you still have a front cover, and a back cover — stay alive, protect what you have left, and show others how much of a strong heart you have. Maybe one day, someone will read your book that has knowledge, experience, and a perception that drives them to wake others out of their cocooned and depressed shell. That in itself is a miracle, just look at Jennifer Brea as one of those books.
Featured image: Cinema/HBO
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