Coming Out About My Invisible Disability

I’m coming out as disabled. It’s about time.

I’m a 25-year-old with 80-year-old bones.

Inside my mother’s womb, I developed mostly normally. But my legs didn’t show much growth in the sonograms; there was a mutation lurking on the long arm of the COL2A1 gene of chromosome 12, involved in making Type II collagen. One letter switched in the gene, an amino acid wrongly substituted, cartilage forming too tender within me.

My rare bone disorder, spondyloepiphyseal dysplasia, causes collagen in the joints to form incorrectly, short stature, arthritis, neck instability, scoliosis, joint inflammation, chronic pain, and other issues. It’s actually a form of dwarfism; I just happen to be on the taller end of the spectrum at 4’6”.

Facing all of this, knowing at a young age that my bones would deteriorate much quicker than my friends, wasn’t scary. I’d need joint replacements and surgeries. I knew my path. I learned to love my body for what it is and all I can do, even with pain.

For many years, in fact, until I was 23, I could pass. I wasn’t very visibly disabled as a kid. I played tag with the neighborhood kids, climbed trees with my sister, went on long bike rides. I could pretty much pass as a “normal” person, who just happened to be very short. You’ve seen us. Short people are everywhere. And I love being short, even though we live in a tall world.

In elementary school, I showed off on the playground, yelling for my mom to watch me climb up the fireman pole. Wrapping my feet around the base, I’d pull myself up — my upper body strength always better. On the monkey bars, I’d wiggle my way in between two bars and sit on top, surveying the playground from a higher vantage point.

One summer afternoon, my dad took me on a particularly long bike ride along the C and O Canal, from Great Falls, Maryland to Georgetown, D.C., about 15 miles each way. I made it, sweaty and exhausted.

In P.E. at school, I begrudgingly participated in all of the activities. Even the so-called “Fun Run,” a mile-long loop we had to do every Friday in middle school and high school. It was definitely not fun, and I came in last place every time.

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Before 23, I hiked for hours at summer camp, up mountains and down to rivers. I could stand for longer than 20 minutes pain-free.

Back then, my joints would become inflamed from activity. But I could hide my pain in public. I’d ignore it, walk slower, sometimes limp at the end of the day.

Being able to hide your disability or living with an invisible illness is similar to how queer people describe passing as straight, which I also do. But for disability, it’s sometimes easy to pass as “normal,” as a regular person standing in line at the grocery store, but really clenching your jaw from the pain welling up in your back after walking to the store, wandering the aisles, standing in line, and carrying heavy bags.

It’s similar to migraines. The throbbing in my temples is intense; I become sensitive to light, smell, and sound, lights are suns, whispers are stampedes; sometimes even stringing words together is too difficult — but all of this happens internally.

Passing as able-bodied can create complications. There’s a gulf between what people think when they see you and how you actually feel. There’s so much stigma against being sick and “putting on a good face” that, often, no one will know unless you’re visibly disabled.

Passing is worrying if I’ll be judged for using a disability parking permit if I decide to forgo my cane for a day. It’s getting on a full bus and urging someone to get up so I can sit down, and people replying “you’re young, you don’t look disabled.” If I stood for a full bus ride, jostling among strangers, my back pain would become so intense, it would start shooting numbness down my right leg. Not to mention, I can’t stand easily on a bus because I can’t even reach the handrails.

Passing as a “normal” person when you have an invisible disability or illness can be frustrating. Sometimes pain can be concealed. Sometimes we hide our pain because it’s easier.

—

Everything changed at 23, when I was working as a journalist. I was covering a technology conference in the Washington Convention Center, running around from one end of the large building to the other, cramming in interviews, producing as many stories during the week as I could.

During one session, hunched over my laptop, furiously typing, my legs dangling because conference chairs are always too high for me, I noticed a twinge of pain in my lower left back, but pushed it aside because I was on deadline. I was probably pulling something in that position, but didn’t realize.

When the session ended, I realized I couldn’t stand up straight. There was a searing pain in my lower left back, and numbness spreading from my right butt cheek to my foot. If I tried to straighten up, the pain intensified. But I had another interview to get to in a luckily nearby part of the building, so I threw my backpack on my shoulders and dragged myself out. I got through the interview quickly and hobbled to the bathroom, where I called my boss crying, and told him I’d have to go home. I took the Metro, then drove, somehow, with my entire right leg and foot numb. Got into my house and onto the sofa and cried some more.

I now realize I probably should have gone to the emergency room, but I wasn’t thinking straight at the time. It was one of the scariest moments of my life.

For the next week, I laid in bed. The pain was so bad, I was having back spasms just from sitting up or moving. The numbness was persistent. I was afraid I would never walk again.

My body was really trying to get me to listen. “You need to change your career,” it told me, clearly. I was heartbroken because I’d wanted to be a journalist since I was a kid. It had been my dream, one that I had spent my life working towards.

Who was I if not a journalist?

—

Three years later, multiple doctors still don’t know what happened that day in the convention center. Yes, I had scoliosis from my skeletal dysplasia — perhaps it was my spine continuing to curve? X-rays showed it wasn’t. Yes, I have a bone disorder, so pain is expected. But I’ve never experienced anything like that before, even with a scoliosis curve of 44 degrees.

Countless X-rays and MRIs showed it wasn’t a herniated disc. My back looked normal, albeit with disc and vertebrae degeneration typical in 60-year-olds (typical with my bone disorder). No, the doctors wouldn’t operate on me.

Some doctors told me it might have always happened, eventually. One said it might be a fracture in my lowest vertebrae. Something I may have been born with. It’s always frustrating when doctors and specialists don’t know exactly what happened to you. It leaves you stuck in the no man’s land of invisible illness and chronic pain. People on the outside of this no man’s land don’t understand what’s happening inside, where all your pain persists.

After years of medications, steroid injections, physical therapy sessions, and acupuncture appointments, the pain and numbness has lessened somewhat, but remains. If I stand for longer than 20 minutes, the pain in my lower left back becomes exacerbated, angry, forces me to sit and rest. My hips, too, freeze up. I need them replaced soon.

I’ve chosen to stay mostly medication-free because the types of medicines I would need to be on to lessen the pain make me feel loopy and untethered from this Earth. Other medicine that doesn’t have that effect doesn’t lessen the pain significantly. So far, this is how I cope. I soak in frequent Epsom baths, get massages when I can, take NSAIDs when the pain becomes too intense. When I’m in the midst of back spasms or when my hips refuse to bend, I write. My methods may change in the future.

About a year ago, I started using a cane to help me stand longer and walk farther. Some days I feel like a fraud. Like I don’t need it, like I’m looking sorrier than I am. But then, at the end of other days, I’m so hunched over from pain that the cane comes in really handy. Assistive devices and mobility aids like canes help millions of people live and do more.

I’ve had to adjust to stares from people on the street, ask people to let me sit on the bus or Metro if there isn’t a seat, and get used to living more visibly disabled. Sometimes, strangers tell me I’m too young to be using a cane, but this is my life. I wouldn’t be using it if I didn’t need it.

Now, my disability is much more visible. And I’ve had to learn how to adapt. Bodies adapt. Humans are resilient.

As a disabled writer, it can be hard to attend conferences, festivals, travel for book tours, and more. Sometimes, just giving readings and standing at a podium is painful. Wandering around conference centers is tiring. But I push myself to attend conferences and festivals like AWP and Split This Rock because it is so vital to have diverse voices represented — and I love being involved in the literary community. The panels I speak on at these events often focus on the disabled body and how to build inclusive writing communities, and having these conversations continues to be one of my goals. Just like publishing my own work in literary magazines and books remains an ever-present goal and dream of mine. I have two books of poetry about life with chronic pain and my bone disorder, “Crumb-sized” and “On that one-way trip to Mars.”

I work in marketing at the Society for Science and the Public, a science nonprofit, where I interview alumni of our science competitions, learn about their inventions and research, and constantly produce stories for our blog. I’ve embraced nerdiness.

I also serve as the poetry editor of District Lit, a literary magazine based in Washington, D.C. This summer I organized an issue dedicated to disability, chronic illness, and medicine. It’s important for me as an editor, as a gatekeeper, to do my best to increase representation and opportunities for minority writers, queer writers, writers of color, disabled writers, and others.

Through all of my struggles and experiences with pain, I’ve learned that bodies — that my body — are stronger than I know. That I will survive. Sometimes I’ll cry, feel weak, or worthless. But I’m not worthless. I go through every day with so much more pain than others may experience in their lives — and I’m still here.

Follow this journey on Marlena’s website.

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Thinkstock photo by Golubovy.