I have a disability.
Growing up I never would have thought I would hear those words come from my lips. I was always an exceptionally healthy individual; I exercised very regularly, ate well, and excelled academically.
Even in the very worst points of my illness I wasn’t able to comprehend that this word is attached to me now. I don’t have a normal life anymore, and I do need a lot of help with tasks that most people my age wouldn’t even think twice about because they are so mundane. I have to tell myself this over and over again to understand that asking a friend to carry a “heavy” water bottle will not make their arms hurt for days after or that having someone drive 30 minutes to see me isn’t going to bring them any sort of physical pain like driving more than 15 minutes down the road does for me. This is a difficult concept to grasp after living the way I have been for three years now.
When I first got POTS it came with an electric blue handicapped parking pass. This was to accompany me everywhere. I took it to my doctor appointments and to the gym — the only two places I could muster up enough energy to go to when I first fell ill. I was determined to get better, and although I wasn’t able to go out with friends, I would force myself to go on these necessary trips with the hope of having a normal life again one day.
My mother lovingly called my handicapped pass my “VIP pass,” but my brain couldn’t comprehend that this was something that was okay for me to use. I was so used to being able to do everything by myself and having an independent lifestyle that when my working body was torn away from me I didn’t know how to react. I felt guilty using the pass, but when I didn’t I would often feel too dizzy to walk to the back of the parking lot and someone would have to come pick me up. I had moments when I had to lie down in the middle of the parking lot so I wouldn’t pass out on the hard concrete and get sent to the hospital again because of a cracked head or something. I remember my heart freaking out on me so many times while I was merely trying to decide on something like whether I wanted to try vanilla or plain almond milk. I would lie down in the middle of the grocery aisle and put my feet on a low shelf to get the blood flowing back to my brain (Hence, the “postural” part of POTS). The girl who was literally passing out from just standing up felt like she couldn’t label herself as disabled.
A lot of this had to do with my chronic optimism and hopefulness that I would one day be better. The other half, though, had to do with the way I thought about disability. The handicapped pass says it all with the picture of a wheelchair as the symbol for the disabled. I do not look like someone who has a physical disability. I look like an average run of the mill girl you’d see on a college campus or studying at Starbucks. If anything I actually look like an athlete, as I am tall, thin, and wear my sneakers almost everywhere I go (They’re a lot easier on my knees than any of the cute boots or heels I loved wearing just a few years ago). I do not look sick. You absolutely cannot see my pain; even doctors have to feel different parts of my body or rely on complicated tests to see that I’m not just an average twentysomething.
I’m always surprised when people tell me they’re “glad I’m feeling better” when they see pictures from photoshoots or nights out with my friends. A picture might be worth a thousand words, but without the context behind the photo it’s impossible to get an accurate story. The story behind this photo that my friend Audrey took would be about how blessed I felt to have a “good day.” It would include that I had a hard time turning my neck for some of the photos, and trying to overlook the sharp pain in my arms and shoulders so that I could have a fun day with my best friend. Despite some pain and difficulties, this is an overall happy photo for me to look back at.
This photo tells a different story. It was taken two years ago by my cousin Kristin. A bunch of my relatives were visiting for Thanksgiving and since Kristin is a photographer, we decided to take a few family photos outside. I was freezing and wore a giant puffy coat until we got to the bridge across the street from my house. My head was spinning, so after a few shots I shivered all the way home where I promptly went to my room to take a nap in hopes of sleeping off some of my POTS symptoms. I didn’t get to help make the dessert — one of my favorite Thanksgiving activities — and I missed out on a lot of quality family time because I wasn’t feeling well enough to sit around and visit with everyone. I stayed in my room much of the visit, sleeping or watching Netflix, as there wasn’t a comfortable place for me to sit in the living room with my family. Even sitting up can be exhausting with POTS, as the blood rushes away from my brain and makes me dizzy.
I still don’t think of myself as being very different than anyone else. I have been sick for so long now part of me feels like my life has always been like this. I don’t really remember what it’s like being able to go to a store by myself without planning where I can get water with electrolytes, as I cannot carry my own water bottle for more than a few minutes at a time. Sometimes I feel like the rest of my life was a beautiful dream; I remember so many of the good parts of not being sick that I almost glorify regular life now. I think back to being able to go clubbing with friends and feeling carefree rushing around the streets of New York City. I remember how amazing running felt and miss the burning in my lungs from training out in the cold, crisp fall weather.
I remember how life was before I got sick and sometimes wish I could go back and fully enjoy the time I had. I wasted so much time worrying about the future and my plans that I didn’t even realize that whether or not I like it, I might not be in control of my own life — at least to an extent. I can’t work, and I act like going to doctor appointments as often as a full time job is a normal thing. All of my college dreams were shattered the day I got sick. I still do dream of being better one day and being able to write for a living. I want to be independent again one day, and I would love to be able to train for even just a 5K.
You can’t see my disability, but it’s there every minute of every day. Having POTS has been a great lesson to me that just because someone looks healthy or looks happy doesn’t mean that they are. Looks can be deceiving. You never really know a person until you hear their story.