Dear Juvenile Rheumatoid Arthritis,

You are the term that has been engraved into my soul since birth. You are genetic and you manipulate my immune system to think there is something wrong with my joints. My immune system attacks me,  causing inflammation and pain. You’re a seven-year-old girl with chocolaty brown eyes, long flowing hair, and an innocent face, wincing in pain. You are the smell of antiseptic as she enters the infinite number of hospitals and doctors’ offices. You taste like the toxic medication that chokes the girl twice a day for the rest of her life. You feel like the piercing needles penetrating her skin to devour her blood, the warm salty tears racing down her face, the constant throbbing pain that stole away her innocence. Most of all, you are the sounds you cause. You’re the “Mommy, it hurts,” “I scooch down the stairs because I can’t take the pain,” and “The swelling hasn’t gone down. Let’s put on a cast.” You’re a mother screaming, “Tell me what’s wrong with my baby!” You’re the “If God is so great, if he really does love me, then why would he do this to me?” that the little girl screamed at her religious grandmother. You’re her sobs from the pain. You’re the taunts of the children. You are how many times I was called their “little trooper.” You are me.

I want to thank you for this. If I was not bound to you, I would not be the person I am. I’ve become a compassionate, stubborn, and determined young lady who wears her heart on her sleeve. These traits are the key to my dream. I want to change the world, I want to help people, and see the impact I make. I have this dream because of what you put me through. I’ve been directly affected by confusion, pain, and have no one that can tell me that they understand. I don’t want others to be put through this, so I will be a person who guides them through their journey.

For the past nine years, I’ve had annual doctor appointments, sometimes more often depending how badly you were affecting me. I think back to 2009. I draw in a sharp breath and the taste of antiseptic lingers on my tongue. As I run down the hall of the University of Michigan’s Mott’s Children’s Hospital I feel the scrutinizing gaze of the doctors and my parents analyzing my flawed running. My footfalls echo in the silent corridor. I pass the nurses’ station and their possible thoughts echo through my head. I abruptly come to a stop and dodge an unexpecting doctor, then turn around to run back toward my fate. I’ve performed this run a thousand times. It is a display of the dreaded truth that I try to hide behind a prideful march of improvement and then back again like a forever swinging pendulum.

Yes, I am grateful to you, but I would never wish you upon someone else. You are genetic. You could have neglected me and sprung upon one of my sisters, Kristen or Emily. I could walk into a room to see warm tears leaking from Kristen’s face. Maybe, it would be little Emily and I would console her when she didn’t understand her school work because she missed another day. I would wrap my arms around them to protect them from the evil of the world. I would gladly balance this burden upon my shoulders for them.

You’ve taught me the importance of family. When you took a hold of my life everyone was scared, especially me. They hid their fear, took my little hands, and we stood against you as a family. It was always the little things that helped the most. When you were finally given a name my grandmother, Mimmi, dove into research. She hated that I had all these medications and kept trying to find alternative relief. She even planted yellow tomatoes in her garden just for me because acidic foods are harmful to arthritis patients. Now they are my favorite. My aunt helped me with my first injection of medication. My parents were probably hit the hardest by you. I was their first child and they had to face the fears of any new parent. I’m so lucky to have them because they have been so supportive along the way. There was also the impact of unknown family. We desperately tried to find who you came from. No one knew. My father barely knew anyone from his dad’s side, but when my great-grandmother passed and we went to Tennessee for her funeral, I got my answers. As the cool Tennessee air nipped at our noses, we found your roots within my great-grandmother.

When my dam of courage broke and the river of despair rushed out of my eyes, I questioned my Mimmi about why God would do this to me. We had slowed to a stop in front of the garage. She kept saying how she is praying for me and that God will help. I had snapped at her, “If God is so great, if he really does love me, then why would he do this to me?” She looked down and grabbed my hand. “Because he knows you are strong enough.” At the time I was just a little girl who had grown up too fast. Now I’m a strong young lady who is still a little scared of the future, but I know I am strong enough. These words have guided me through my life. Eight years later I framed these words and they became real. I gave them to Mimmi as a Christmas present. As she opened it her eyes squinted in confusion. I could tell she didn’t know that these were her words, the words that gave me light. As I explained and thanked her for all she had done for me, everyone began to cry. At this moment, I was beyond your pain and enveloped in the love you brought me.

“This looks good, really good. I think we can say you are in remission.” I let out a shaky breath and a laugh. My joy spilled out of my eyes. For the first time in years, I felt like I could breathe. I was floating. You were the burden that weighed me down, but let me go and allowed me to fly. My parents’ smiles radiated in my direction as we realized all of the things that seemed impossible could now be achieved. Things as simple as wearing heels suddenly became a reality. I have felt this twice since I was diagnosed. However, I’ve had to face my genetics three times. You are a battle that I will continue to fight because I will always be their little trooper.