I still haven't found what I'm looking for...

Some months ago, I was afflicted by... exhaustion. I don’t remember when or how it began, but I felt like I’d been hit by a speeding truck.

It was a tiredness so extreme that I could barely get out of bed, so pervasive that I was drained after the mere act of brushing my teeth. Walking my dog left me breathless, and every night when I got home, I sat in my car with my head on the steering wheel, willing myself to muster up the energy to move.

Medical tests revealed nothing wrong, so I soldiered on, cranking up the caffeine and pep talks, determined that I would embody “mind over matter” and other such platitudes. I have always relied on my grit and commitment to get through rough patches, and I couldn’t understand why they were failing me. I managed to fulfill my professional responsibilities, seemingly successfully, while spending all my free time in bed, with a brain fog so dense I couldn’t remember anything that wasn’t written down.

Months passed by with little respite, and I began to notice my doctors’ attitudes shifting. They accused me of hypochondria and misdiagnosed me with everything from depression to diabetes (in the palpable absence of any other related symptoms). When I tried to explain how I was feeling to anyone, they immediately began relating their own litany of tiredness. Some reacted with exasperation or disparaged my ‘quarter life crisis,’ leading me to shut down further. Either way, it seemed impossible to explain how I’d suddenly become a shadow of my former self; I had no vocabulary or frame of reference for my living hell. Even my parents threw their hands up in frustration, urging me to quit my job and take a long sabbatical, worried but also annoyed at what they saw as the inevitable outcome of my ‘unhappy,’ workaholic, unmarried state.

During an endless WebMDing spiral, I self diagnosed Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis. The symptoms seemed to fit, and I hesitantly asked my pediatrician- the one doctor I totally trust- if it could be the issue. He literally laughed out loud, and dismissed me saying, “That’s not a real illness! Just take a long vacation, you’ve earned it. Don’t let me hear you saying such rubbish again.”

Finally, after some episodes of fainting and near collapse, a doctor (in another city) tested my vitamin levels and found that my D and B12 levels were extremely low. He also diagnosed me with low level burnout. After some initial struggle to accept the diagnoses (’mind over matter!’), I finally got the treatment and help that I needed. It’s taken me six months to begin to feel like my old self, physically, mentally, and emotionally.

When I look back at that dark, lonely period, I feel relief. And overwhelming gratitude. I was one of the lucky ones- I was spared a life sentence such as CFS, or a terminal one like cancer.

And yet, I have seen first hand, over and over again, how health, particularly women’s health, remains a battlefield that’s mired in notions of dramatism and ‘hysteria.’ Prevailing mindsets often belittle or ignore medical mysteries until it’s too late.

The medical community has a responsibility to evolve and educate itself. But then, so do we, as a species and society. That’s why I’m sharing my story today, in the hope that it will lead you to Jennifer Brea’s.

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It was during my health struggle that I first encountered Jennifer Brea, and her work on spreading awareness about ME/CFS. A daunting task for someone in the best of health, she’s become an advocate for silent millions across the world, who’re trapped in a malaise that’s still widely unknown and unfortunately misunderstood.

Her story remains a source of daily inspiration and thanksgiving for me. It is about so much more than just illness.

Unconditional love. Quiet courage. The absence of answers about human existence, in particular: “Why me?” And the ability to persevere in the face of indomitable odds.

I’ve always thought it scary and humbling, the number of glitches the human body can experience. And yet, nothing is more motivating than the resilience of the human spirit.

“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.“ -Viktor Frankl

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