What happens when you know something is terribly wrong but nobody believes you?
Not too long ago, if Jennifer Brea had gone to a doctor with the debilitating symptoms that left her bedridden, she would have been diagnosed with "hysteria" — a catch-all for pretty much any unexplainable symptom experienced by a woman and attributed to things like an uncooperative uterus, or sexual repression, or sexual promiscuity . . . or just women’s "frailty."
Today, Jennifer is diagnosed with a condition generically described as chronic fatigue syndrome/myalgic encephalomyelitis (ME for short). There is no test and there is no cure. In fact, it wasn’t until a decade ago that medical professionals recognized it as a true condition, even though millions of people in the U.S. — mostly women — meet the criteria for it.
As Jennifer sought treatment for her symptoms, “they would run a wide range of tests and do investigations. And then when they couldn't find anything, it always turned back to, ‘Well, maybe you're just really stressed. Maybe you are depressed. Maybe there's nothing wrong at all. Maybe this is all in your head.’”
It took Jennifer over a year of seeing doctors and getting second, third and fourth opinions to even land on her diagnosis. Was this reluctance to diagnose Jennifer due to the lack of knowledge about this fairly prevalent disease? Or was there another unstated prejudice standing in the way of Jennifer getting treatment?
“I started to suspect as I was trying to get a diagnosis that I was being taken less seriously because I was young and female there was a strong expectation that because of my youth I was supposed to be well and nothing could be wrong,” Jennifer told me in our interview for "Inflection Point." “But that also because of my youth and my gender that I was just more prone to be kind of anxious and worry about my body and what I was feeling. . . . And I think there's just this sort of unspoken expectation that women are more fragile and more achy, more whatever.”
Jennifer and millions of other people diagnosed with ME — mostly women — have quietly disappeared from the radar of the medical establishment while they suffer alone in their beds for days, weeks, even months, sometimes unable to turn on a light or even listen to music because of their unbearable pain.
To show the world that this is a real disease with a truly debilitating impact on her life — not just in her head — and to inspire the medical community to take the lead on finding answers, Jennifer created a film, mostly from her bed, out of the videos she captured of herself, others like her and the few experts there are. Her film is called "Unrest."
Listen to our conversation:
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As Jennifer told me, "there are literally thousands of people out there who you don't know yet, but we're here and we will embrace you and we will do everything we can to support you and we will believe you."
It’s time for women to be taken seriously when it comes to our health, our bodies and our ability to speak out.
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