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When I Realized My 'Body Quirks' Were Symptoms of a Chronic Illness

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I used to love long, hot showers, the steam filling up my bathroom and coating everything in a sticky dew. I always knew, though, that I had to be careful – that if I stayed in there too long I would feel that familiar nausea, that lightheaded feeling that forced me out of the shower and onto my bathroom floor.

I always avoided committing to events I knew would require standing in lines. I regularly felt ill waiting for the train when I had early morning classes. or when my family was about to take a vacation somewhere and my father insisted on taking what felt like the earliest possible train or flight.

It was a bizarre fact of life that I had always as accepted as normal, my normal. It was just something my body did.

One week last year was my final straw: I had an early class and stepped onto the overcrowded bus, forced to stand with my face in somebody’s armpit, holding on to somebody’s back seat handle and using the muscles in my feet to keep me balanced as the bus shook with each turn.

The ride through the tunnel at this hour is always agonizingly slow, clogged with the tired masses commuting to work. The bus, filled with more people than I think is probably legal, gets hotter and stuffier as the ride goes on, the huge group of passengers filling the air with their body heat and warm breaths.

I felt that familiar light headedness, that creeping wave of nausea, as I started sweating bullets, my anxiety rising. I knew, inherently, that I’d be fine once we got to the terminal. I’d be fine once I could walk and breathe and get off this bus.

Traffic was particularly bad that morning, though… the nausea came in waves and my light headedness was turning into that fainting feeling – the same one I had when I once briefly fainted in a campus bathroom, immediately returning to full consciousness as soon as I had hit the floor. There was no room to faint here, though. I used the working bits of my consciousness to find a seat in the back… a tiny sliver of room not everyone would fit in, but I asked (something I normally wouldn’t do) for some room and immediately sat down, burying my head on the backpack in my lap.

Luckily, I stabilized quickly. The light headedness went away quickly, and the nausea soon thereafter. As soon as I stepped off the bus into the cool air and began walking briskly to the subway I was fine, with an unseemly sheen of sweat coating my face.

After nearly fainting in the shower the following week, I decided that this might be a genuine medical issue I was suffering from, not a weird bodily “quirk” of mine.

This is how I was diagnosed with chronic orthostatic intolerance, a form of dysautonomia (a dysfunction of your autonomic nervous system). Standing upright and still for long periods – particularly if it’s hot or you’re tired – causes your circulatory system to pool blood in the lower parts of your body and not enough ends up going to your brain.

It’s actually rather common in its various forms, but not much is known about these conditions by the public. Explaining it to people usually produces a puzzled, “Huh, weird,” response as they move the conversation onward and elsewhere, and I’m always doubtful they realize how debilitating a condition it can be. I receive dirty looks on the subway for not giving up my seat for a pregnant woman or the like and I have considered buying a commuting shirt that reads, “I have an invisible disability, please allow me a seat.”

I’m writing this as a friendly reminder that people can be struggling with something without obvious signs. Those of us with invisible illnesses know this well, but it can be exhausting to explain ourselves (as if we owe anyone an explanation) to people who hear “disabled” and expect to see a wheelchair.

We aren’t asking for much: just a little compassion and understanding. Oh, and a place to sit real quick.

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Thinkstock Image By: jk78

Originally published: June 29, 2017
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