Lived Through This

When Your Disorder Doesn’t Exist

‘Medically unexplained’ symptoms are as misunderstood as they are common. Here’s what I wish people knew.

Nicole M. Luongo
Human Parts
Published in
12 min readNov 10, 2020

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Distraught woman covering her face while lying on the ground against a black background.
Photo: Hailey Kean/Unsplash

At 24 years old, my stomach hurt. A lot. It wasn’t “gastrointestinal discomfort” (though multiple doctors tried to argue about my diet), nor did it indicate that I was menstruating (I was anorexic and hadn’t done so in years).

This was a “my abdomen is being sliced down the middle by a jagged instrument while a third, more decisive tool churns my insides apart” pain. It was wrenching, twisting, mechanical. The pain started in my sternum and spread down, sideways, outward, and inward. Standing was bad; sitting made it worse. It took my breath away. To this day, its intensity is unmatched.

I’m 31 now, and the pain is still here. It still shocks me with its acuity.

As I write this, the pain begins at my left rib cage and cuts diagonally, decimating the organs in its path. I can see the pain — it is textured, colorful, relentless — and if I focus too intently, it ascends toward my head. The pain makes me dizzy. It makes me want to scream. Tomorrow will be similar but different, simultaneously predictable, mundane, and grotesque.

The pain has been a constant presence for the last seven years. And according to the medical community, it isn’t real.

I’m not sharing this to find answers (trust me, I have tried) but to feel (slightly) less alone. I also hope this resonates with people who, like me, have exhausted their options, have no conclusions, and are tired of others implying they’re just Mad.

I am mad, but not in the “crazy” sense.

My official diagnosis is “somatic symptom disorder” (SSD). Unfortunately, there are multiple phenomena that fall under this category, and their only similarity is that they don’t appear on tests. In terms of getting diagnosed, this means that I spent two years cycling between gastroenterologists (they suspected internal bleeding or cancer, but my colonoscopies were fine), hematologists (they learned that I was extremely anemic and gave me iron infusions, but couldn’t explain the pain), nutritionists (irrelevant), herbalists (ditto)…

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Nicole M. Luongo
Human Parts

Author. Academic. Mad Woman | Critical takes on health and illness | Pre-order my book: https://www.amazon.ca/Becoming-Nicole-Luongo/dp/177133813X