My heels click against the tile of the cafeteria floor as I weave my way through the tables. As my friend and I reach the carpeted floor just outside the lunchroom, our destination comes into focus: the elevator. I continue on through the waves of people huddled around the door to the hallway to press the cold, plastic button that draws the elevator closer. As I hear the elevator slowly creak on its way down, I see a woman move towards me out of the corner of my eye. As I contemplate her presence I hear a bright “ding” come from the elevator, and I draw my attention away from the woman and back to my task: getting upstairs before passing period. However, as soon as my friend and I board the elevator, she approaches us. She stands in front of me and begins her series of questions. She asks “Why are you taking the elevator” and “does your counselor know” all while staring me down. I have heard these questions an innumerable amount of times in the past, but this time I am trying to beat a deadline. I try to explain my condition in a panic. The anxiety builds as I realize that I may become stuck in the looming passing period if she holds us any longer. For me, passing period is like being a wounded gazelle in a herd of rhinos. I begin to fear the inevitable trampling as she presses onwards with her relentless questioning. I gaze onwards to the clock, now tapping my foot. I can almost hear the seconds ticking away “tick, tock, tick, tock."

After what seems like hours of interrogation, I come to terms with the fact that the security guard does not understand why I need the elevator, and no level of explaining will allow her to see my need. My worst nightmare seems to come true as the bell rings, and she simultaneously demands my friend to leave the elevator. My anxiety now turns to fury. I want to scream as I am faced with yet another person who does not believe me. I want to scream with every last breath at this woman who is putting me in danger by taking away my friend. With my condition I never know when I will lose the ability to breathe, the ability to walk, or the ability to remain conscious which makes a friend accompanying me a necessity. This danger is not what she sees though. In that moment, she sees a normal teenager trying to sneak into the elevator with her friend. She sees a girl with her hair and makeup done who cannot possibly be sick. She sees what so many others do; she sees a girl faking her illness.

Beyond the makeup, the smile, and the “I’m okay” face though, there is a girl that struggles every day. There is a girl who suffers from chronic pain, chronic fatigue, POTS, dysautonomia, stomach troubles, cranio cervical instability, chronic migraines, chronic dislocations, and the list goes on. Behind the smile, there is a girl who is at an 8/10 on a pain scale barely holding on to her sanity. Behind my facade, I am truly sick.

What this woman did not see was my morning. I woke at 5:30 not wanting to move. I sat there in my bed pretending that I was healthy. I smiled as I laid there perfectly still, momentarily pain free, unbeknownst to the challenges that awaited me as I began my day. I sat scrolling through Facebook and checking shares on my most recent articles as I watched the minutes melt away. I grasp those few minutes of freedom every morning like a scared child clings that to their mother. After two minutes of blissful painlessness, it is time to start my day. I decide to start to slowly get up to face my first challenge: getting out of bed. I mentally prepare myself for the pain sinking it claws back into me as it does every morning like a bird grasping its prey. I slowly move to untangle myself from my sheets, and I pull myself to edge of my bed. At this point my body begins to scream at me. My joints ache, my head throbs, and I begin to feel the reality of that morning’s dislocations. I relocate my joints in silence, but the whole time I long to cry out in pain. The only medication strong enough to drown out my pain at this point is music, so I crank up my Fall Out Boy and hope for the best. I start my daily series of relocations with my wrist so that I can use it to fix other joints, and then continue on to relocate my left knee, my right ankle, and my neck. Once these are all in place I decide to stand up. I soon come to realize that this was not the correct choice as I fall over, blacking out. I lay there on the floor unable to move, unable to see, unable to hear. In that moment I am helpless. I am blind, I am deaf, and worst of all I cannot call out for help. I sit there screaming out for someone, anyone to help me, but the words cannot come out. The fog begins to lift though, and I soon regain my senses along with my sanity. Now though, I am on the cold, hard ground, in the same boat as I was moments earlier, except now I must get off the floor, which is an added challenge. I lay on the cool carpet in intense pain, realizing that today will be a rough day. With every breath I take I feel a rib stab my lung a little bit more; with every sob I let out I can feel my trachea closer and closer to collapsing; with every movement of my limbs brings more knives down on the already throbbing joints. At this point I consider giving up. As the pain becomes more and more unbearable, the light at the end of the tunnel begins to flicker out. I dig as deep as I can, and I find the strength to make the first move. My wrist twitches as I experience the first sign of life I have had in minutes. Before I know it, my body has miraculously begun to build itself back up until I find myself fully put back together. I reteach myself how to walk one foot as a time as I do every day, slowly making my way to the shower. Joints creak and the pain worsens, but I choose to fight to remain walking. I choose to fight to keep living.

I finally make my way across my room and into the shower. At this point I begin to feel that the worst has surely passed, and that it will uphill from here; I am wrong. The moment my foot hits the bath rug, my dysautonomia sets in. My blood begins to pool in my feet as my head begins to feel lighter and lighter like a balloon deflating. I stumble into my room, smacking into the door post as I fall over. I lay there, back on the carpet, but this time I feel a moment of peace. I lay as still as I can and take in the silence. This is a normal occurrence for me. Five minutes of every day are spent laying on my floor allowing my blood flow to return. I lay there hoping and praying that my veins will open up again soon. The minutes tick by as my feet become bluer, and my head becomes lighter. One. Two. Three minutes pass. I have all but given up hope when suddenly I feel a splash of warmness down my right arm, then down my left arm, and finally color returns to my body. My head becomes heavier and heavier until it is back to its normal “weight”, and I am able to move on with my day.

I decide to do my makeup next so that I can appear as a healthy teenager rather than the zombie my fatigue quite often makes me appear as. I paint my face with the brushes, and just as I am putting on my finishing touches, my trachea moves out of place. I gasp for air as I try to wiggle it back into place. I sit there hoping and praying that it will go back in, and today won’t be the day I suffocate in my own body. My face goes numb as I still struggle to replace it. At this point my anxiety levels begin to rise. I panic as I tell myself not to panic, but there is no way not to panic when you are getting barely any air. My hands turn purple as I still fight with my trachea. The struggle feels like an eternity as I gasp, choke, and drown in my own spit. Seconds turn into minutes, but luckily minutes do not turn into hours; I eventually win. My trachea snaps into place, and I breathe as if I have never breathed before.

I push forward through my morning with an occasional dislocation or subluxation, but I am otherwise ok. In the car I practice my “I’m ok” face for school. I sit in front of a mirror smiling, trying to figure out which facial expression makes me appear the least pained. I settle on a huge smile as I walk into the building. From there on out I am to be “normal”. I take tests, laugh with friends, and participate in clubs. The truth is that I am a normal teenager in some ways. I laugh, I cry, I have fun, and for now, I am able to be in school most days. It make take me more work than others to appear this way, but I am the same person as I was before. I find happiness in supporting those with special needs, sign language, coaching cheerleading, and writing. My condition has allowed me so many opportunities I would have never had prior to becoming sick. I have been fortunate enough to become a published writer on a site for chronic illnesses called The Mighty, which led to my hiring at The Odyssey, I have met some amazing people, and above all I have stayed the same person as I was before my illness; now I just am extra special.

I am going to be honest when I say that every day becomes harder. Every day I draw closer to brain surgery, to my heart giving out, and to my trachea collapsing for good, but for now I try to be a normal teenager. I do need access to the elevator, but if the people who doubt me could simply have knowledge my invisible illness, I do not believe I will ever be doubted again. It all comes down to awareness. My goal has turned into advocating for my rare disease and spreading awareness so that scenes like the one I just laid out can be avoided in the future. For now though, I am just a sick girl in an appearingly healthy body.