I previously wrote an article addressed to my chronic pain, thanking it for putting me on the path to meet amazing people, but confronting how my chronic pain is not going to control me anymore. I've gotten many messages from different people who have witnessed first or second hand the power behind this illness, thanking me for sharing a personal aspect of my life. My letter gave some people hope that the pain can end, but where I am now and where I was, took a lot of time, pain, and hard work to get here.
November is considered Chronic Pain Awareness month, so I wanted to share the full story of my experience. I have RSD/CRPS. Reflex Sympathetic Dystrophy or more easily known as Chronic Regional Pain Syndrome, will always be apart of me; it shaped me to be the person that I am, but that wasn't easy to accept. RSD is a pain illness that doesn't discriminate, judge, or care what is going on in your life. It has the power to control yourself and everyone around you. It might seem silly to think that a pain illness can control everything, but not being able to tolerate a hug because it causes burning extremely sharp pain, is the daily struggle of a RSD warrior.
That was my daily struggle, and always will be my daily struggle. Although I have not had a flare up in a while, doesn't mean that I am released from the shackles to go run through a meadow of fresh flowers. I continuously live in fear of it coming back. I was 15 when I injured my back and shoulder that eventually led to me developing this due to accidents. At the time many doctors and nurses in many different hospitals would constantly tell me "You are too young to be going through this!" I wouldn't let my mouth run off even though I would think to myself, well that's great, but I still have it and it still happened. I never truly understood how young 15 truly is because I thought that I was old enough to deal with this. Going through treatments, seeing different doctors, put on numerous medications, PT, OT, therapy sessions, most people didn't believe that I wasn't making this up and it was an actual problem, my high school being one of many, was a struggle to explain to your friends, family, and retelling everything more than 500 times to strangers, took up much of my energy and time.
By age 16, I found others who were going through the same thing, I finally felt hopefully because I wasn't a rare case that needed Dr. House to figure out whats wrong with me. The bond we share through this illness is an unbreakable one, we suffered, cried, motivated, and fought with each other everyday for 8 hours. We were able to be understood and accepted. This isn't the end of the story, although most times I wish it was, having that support system helped, but it didn't magically make the pain we had felt for years go away.
I then went through treatments that didn't guarantee it stop the pain, and often made the pain worse, I felt hopeless. I felt defeated, depressed, and drained mentally and physically. The place I am in today took a lot of time and work to get here; reflecting on why this happened and what good could come out of it was the phrase many therapists told me in which I wanted to respond by using a string of swear words put into one sentence, but I bit my tongue.
I learned how to put on a mask so no one would suspect I had RSD. I feared being brushed up against when waiting in line to get coffee or worrying about the pot hole infested streets of Boston and how one pot hole could set off a flare. By age 18 nothing had changed. I was finally able to see specialists because I was no longer a minor, but they offered the same solutions i heard years before. I watched as my high school friends got accepted into college, saw their photos of their dorm rooms, sororities, and their new life. It was hard.
Age 19 I decided enough was enough. I threw myself into different situations that I wouldn't even attempt. I went from barely able to walk to being on my feet for 10 hour shifts 6 days a week. I proved to myself that the pain that once controlled me, was now the fuel that powered my fire. Age 20 came around and I had gotten accepted into college and was on my way to NY. Having constant pain that took my breath away, keeping me and my parents up throughout the whole night trying to decide whether we should go to the hospital or not to going to college, living in a dorm, miles away from my home, from the people that understood me frightened me. I was completely out of my comfort zone, and I could not be happier that I did it.
Today being 21, I'm a full time student, writer for the Odyssey, helping arrange fundraisers to raise awareness for RSD, a horseback rider, a semi functioning human (its college, everyone is on the verge of a Britney Spears 2007 break), but most importantly and an RSD warrior. From age 15 till 21 was filled with struggles, pain, fear, and despair, but it was also filled with lessons about what love is, true friendship, the bond of family, and how one illness doesn't define the person you were, are, or going to be. I identify as a warrior because through those struggles, I got one hell of a success story to tell.
