For as long as I can remember I’ve never been “normal.” Growing up didn’t always offer new experiences and joy but offered IVs and blood tests. While other teens got to worry about boys and their grades, I learned exactly what an MRI machine sounded like and how X-Rays worked. I was a “difficult case” my doctor told me. Several doctors told me I was a difficult case, but it all felt the same in those cold, white rooms. The paper they lay over the beds always made me feel sick and the needles to draw blood made my heart feel as if it would pound out of my chest, but there’s no way to calm down a child in distress. Chronic Pain. That was my first real diagnosis at the age of nine. Looking back on it now, that’s a diagnosis that’s as true as it gets. Pain that never fully goes away and makes you constantly aware of some discomfort in your body. My journey through hospital visits and medication has led me to where I am today and has made me as strong and resilient as I am, though I would never wish it on anyone.

            Some days were my good days. I would have period’s where anything was possible, and the pain was barely there. When I was in the third grade, I ran track, mainly long distance. Feeling the wind blow through my face is a feeling I will never forget. I could hear the crowd cheering every time I came in first. Running was my passion, and I was good at it! I could run the mile in under 10 minutes on a good day! When the pain first began it was chalked up to growing pains and me running track. I was an athlete, of course I was going to be in pain. It was the only explanation my doctor had. Being so young, we had no idea what lie ahead. Even where I currently am in life, I am unsure of what this disease could do to me. It wasn’t very long before the symptoms started getting worse. At the age of nine I began collapsing at random moments from the pain. As the walls swirled through my blurred vision all I could do was scream as the pain became unbearable and my legs gave out from under me. As I would lay on the floor, I couldn’t help but wonder why this was happening to me. This didn’t seem like growing pains even though it got worse as I got older. As I write this, I know that even with medication I have a journey ahead of me.

            By the age of fourteen I was familiar with the protocol the hospital required from me. I was on a first-name basis with most of the staff as I was in every month to collect steroids, painkillers, and whatever else my doctor thought might “fix me.” The hospital walls were blisteringly white. So white it almost seemed to burn my eyes from staring at them so long. The hour long wait in the cold room always let reality set in; I was very sick. The doctor in the emergency room would tell me I needed to take Tylenol, it was growing pains, I was going to be fine. The goosebumps on my skin and my shaking only seemed to further upset my doctor as he could never understand. For 8 years I was told I had growing pains. In my head I could only laugh because I hadn’t grown since I was nine, but how do I tell a doctor I threw up the night before and I haven’t slept in two days because there is a horror pushing a hot iron rod into my hip? I couldn’t. With tears blurring my vision, I remember telling my doctor it hurt to walk. The same procedure occurred every time in the same doctor’s room. I would put my gown on and ignored the feeling of the harsh fabric scraping my knees. “Walk from one end of the room to the other” was always how my doctor started the conversation. The floor seemed to sway beneath my feet. I could do it, but it felt like there was barbed wire burrowing into my spinal cord. There were never any lumps, blood tests were normal, I was fine. To a doctor, it is impossible to be sick and silent about it. How could I be sick when everything pointed to me being fine?

            When I was sixteen there was a week where I couldn’t walk at all. I was in so much pain I had missed that week of school because I could hardly get out of bed. My dad decided to take me to the hospital again because at least they could give me painkillers, but this time they took another MRI. When the doctor came back, he looked almost more distressed than I was. I always thought the stereotype of doctors carrying clipboards and apologizing to patients was stupid, but he played the part so well. He said my hip looked like that of a ninety-year-old woman’s. I had severe arthritis that had eaten most of my hip’s cartilage. Ankylosing Spondylitis is my official diagnosis. I have suffered from this disease for over 8 years without anyone knowing. Ankylosing Spondylitis is a form of inflammatory auto-immune arthritis that inflames the major joints in your hips and back, slowly eats away your cartilage, and can leave you in a wheelchair if untreated. I suffered for 8 years with no diagnosis, and I still suffer from this disease.

            From where I am now, I am so thankful they caught it in time. I still have my ability to walk, and I will never take it for granted. I take shots of Humira every two weeks in the hopes my body will stop this attack on itself and I will one day wake up and feel nothing again. I never thought I would long to feel nothing, but it’s better than chronic pain. There are still days where I can’t see from all the tears or the pain gets so bad I feel like getting hit by a bus might feel better, but everyone has their struggles. Everyone has a problem, disease, habit, or self-inflicted suffering that prevents them from moving forward in daily life, but I can’t let that stop me anymore. I have lived my life in fear of movement in case I collapse and in fear people will judge me for my disease, but that’s no way to live. I miss feeling cold winter air blow across my face when running and I miss feeling of elation as I hiked up a mountain, but this is the new mountain I need to climb. This is like a scraped knee to me now. Everything heals in time, and now I’m just waiting to finish healing.

            There is no making it go away forever. No potion or magical ending to make me feel good, but this is my reality. As I am older now I can understand what happened to me and why the diagnosis took so long, but nobody should live their life in fear of moving. Pain is a part of life, but chronic pain should not be. Chronic pain is not normal and should be discussed with a doctor immediately. This is something that should not be so stigmatized in the eyes of the public as everyone has something they are struggling with. I have Ankylosing Spondylitis, but that doesn’t define me. I am defined by my actions just like everyone else is. I am still sick, but that’s okay. There will be days where laying in bed all day carries the same feeling as cocoa on a cold night but fighting this disease will offer me all the comfort and validation I could ever need. I have Ankylosing Spondylitis, but I am so much more than my disease.