No one but me and a handful of doctors know what’s going on underneath my skin. On the surface I look like everyone else I pass on the streets on Manhattan. I hustle through Penn Station after getting off NJ Transit and whip out my MetroCard so I can take the number 1 train up to the Lincoln Center stop. Then, I weave my way through crowds of tourists and other people who work at ABC over to the coffee cart. I’m such a regular my plain hot Lipton tea and buttered roll are prepared for me while I wait on line; that way when I get to the window I put down my two dollars and 75 cents and walk away.
There are very few noticeable, outward signs that I’ve sick for more than 20 years. The war raging inside my body is often hidden from view without an X-ray, CT scan, MRI or blood test. Yet, scars underneath my clothes and the pills I carry in my bag, that I take two to three times a day, are evidence of how viciously my body has turned on itself and begun attacking nearly every organ, tissue and joint in my body.
Still, on an average day, I behave like a “normal” New Yorker. I walk through Central Park when it’s warm out on my lunch break. I wander down to Columbus Circle or up to Grey’s Papaya on 72nd street, trying to ignore the clicking from my back and knees, as well as the pain. I also sit in the park at Lincoln Center and people watch, careful not to stand in one place too long. If I do, my feet will go numb. Of course, all of this is predicated on whether or not I have a doctor’s appointment; that happens about once every two to three weeks.
When the day is done, I hop back on the train and reverse my commute. However, unlike my co-workers, I don’t often stop off for a drink at a local bar. Too many of the nearly dozen different pills I take daily advise against alcohol consumption. I’m also usually worn out. But, it’s not the kind of fatigue that happens when you’ve stayed up too late or partied too hard. It feels like I’ve run ten to twenty miles on a treadmill even though I’ve barely walked two miles.
By the time, I get to Newark Penn Station for the last leg of my trip home a seat on the front of the bus is calling to me. Unfortunately, they’re usually taken by perfectly able bodied people. In fact, even when I’m lugging my cane with me, very few people even offer me a seat. Nonetheless, I usually find a spot to rest my weary bones until the bus stops at the end of my street.
Sometimes, I wonder if people would be kinder if I didn’t have an invisible illness; if I had obvious physical deformities. I’m curious whether they’d stop saying, “you don’t look sick,” “I can’t believe after all this you haven’t lost your smile” and worse yet “I don’t know how you do it;” as if there’s another alternative other than choosing to give up and allowing myself to die. No, when I really think about it, I thank God there are very few outward signs that I’m chronically ill because I know people are treating in a manner that shows their true nature rather than for what’s going on underneath my skin.
** article originally published in the Huffington Post on 10/23/2015
About the Author:
Nika C. Beamon is a veteran television journalist working in New York. She is the author of the well-received non-fiction book, I Didn’t Work This Hard Just to Get Married (Chicago Review Press, 2009), which explores the challenges and issues affecting single women.
She published her first memoir: Misdiagnosed: The Search for Dr. House in 2014. Misdiagnosed is the tale of her 17 year quest to find the correct medical diagnosis and treatment for a rare autoimmune disorder. It also provides tips to help readers avoid the same fate.
Beamon also authored to mystery novels, Dark Recesses and Eyewitness.
Follow Nika C. Beamon on Twitter: www.twitter.com/NikaBeamon