Posted at 11:45 a.m. Oct. 19, 2015

UW student speaks about illness

One year ago, moving off to university seemed like an impossible dream. I thought my biggest challenges upon arrival would be walking across campus and managing my life between friends and homework. I never imagined I would have to defend myself simply for riding an elevator.

I have a chronic, invisible illness called Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia. This means my autonomic nervous system—the part of the body that controls involuntary processes such as the heartbeat, blood pressure, digestion, respiration and more—is dysfunctional.

According to Dysautonomia International, approximately one to three million Americans are impacted by POTS, with millions more around the world. Some patients have mild symptoms (able to continue leading a “normal” social, work and educational life), and others are so severely affected that “normal life activities, such as bathing, housework, eating, sitting upright, walking or standing can be significantly limited.” Dysautonomia International statistics also indicate about 25 percent of POTS patients are disabled and unable to work. Researchers are finding the quality-of-life in many POTS patients comparable to patients on dialysis for kidney failure or those with congestive heart failure.

Personally, I am healthier now than I have been in my six years of illness I still can’t do everything other people can do. Some of my most bothersome symptoms include chronic fatigue and pain, and exercise intolerance—components of my illness that no one else can see but greatly affect the quality of my every day life.

With increasing judgment and lack of awareness, now is the perfect time for me to share my story. October is not only National Breast Cancer Awareness Month, but also Dysautonomia Awareness Month and the end of Invisible Illness Awareness Week (Sept. 28-Oct. 4). To help spread awareness each October I share my painfully honest story with as many listeners as possible in hopes that someone, somewhere will be helped because of it.

I look perfectly healthy. But the entire and difficult truth is that I’m 20 years old, and I don’t remember what it feels like to go through life without compensating for my illness. I have had to back out of plans at the last minute, take a lesser and longer course load than my peers, and lately, try to explain to complete strangers why I need to take an elevator instead of a single flight of stairs.

Since the first week of the fall semester, I have been exposed to snide comments both while waiting for the elevator and while riding in it. Most of these comments consist of students saying to my face that I’m lazy because I didn’t take a flight of stairs. Others wait until I’ve exited the lift and make a joke to the other riders behind my back, whose chorus of laughter follows me down the hallway to my room as I look back and wonder why they couldn’t wait until the doors were closed to speak up.

A few brave souls have asked me sarcastically if taking a flight of stairs is too much, to which I happily inform them that, yes, it actually is because I have a sickness. I usually don’t elaborate, it’s easier than explaining my body’s entire faults in a ten-second elevator ride. Besides, most people think I mean marijuana when I say POTS, and no one takes me seriously then.

For the past few weeks, I’ve been avoiding taking the elevator in my dorm as whenever possible, reluctant to hear the comments made to my face or behind my back. Sometimes I’m saddened by the ignorance around me. Other times I’m angry, and I want to shout: “Would you like to trade places, because I sure would like a body that works!” But I know sudden outbursts of emotion won’t do much to further the progress of invisible illness awareness and there are better ways to react to bullying.

Prior to moving to college, I had had a few strangers accuse me of being lazy or faking my sickness. I have had some doctors tell me there is nothing wrong with my body or that my sickness “isn’t as bad as I think it is.”

Even though my diagnosis has been confirmed by the Medical University of South Carolina, the Mayo Clinic in Minnesota, and the University of Nebraska Medical Center.

With a condition like mine, you learn to take these comments with a grain of salt because not everyone accepts something they can’t see, especially when it comes to a sickness that may allow it’s victim to be perfectly healthy one day and completely incapable of moving the next day or even the next few hours. But it’s not easy when you hear them over and over again.

What these strangers don’t know is that I’m actually faking being well. I can try to hide the way I stumble when the room is spinning around me. I can try to hide the migraine pounding in my head. I even hide the limp I walk with when immense pain is shooting throughout my body like a knife. But there are things I cannot hide no matter how much I try, like the cane I use when I don’t trust my legs to carry me any longer, or how I collapse to the ground when neither my cane nor my legs are strong enough.

I remind myself that, at a passing glance, no one would ever know I’m sick or I’ve been battling my own body every day since the age of 14. They can’t help but think I’m normal because I strive to look and feel like a normal, healthy person.

So while I try to ignore the snickering comments when the elevator stops at the second floor, I think of why my friends and family keep telling me I’m the strongest person they know. It’s because I don’t let POTS stop me. I fight and I try to find the good in everything around me—the people, the struggles—even in all the negative experiences my illness has given me.

In a strange way, I’m thankful for my illness, for the experiences. It reminds me that I’m alive, especially when I feel as like I’m dying. I wouldn’t be the person I am today without it.

I’ve seen my family grow stronger and kinder because of it. I forgive those who don’t know better than to judge, and I hope they can learn from my experiences. But most of all, I hope they never have to experience this for themselves. I hope they can appreciate their lives and the lives of those around them and always be kind because everyone’s battle is important and no one should have to go through it alone.