I am able, I am weak. I am some strength, I am none. I am being, I am thought. I am all things, said and done. I am born, I am died. I am dust upon the roots. I am grace, I am pain. I am labor of willed fruits. I am certain, I am doubtful. I am desperate for solutions.
I am a teenager suffering with Reflex Sympathetic Dystrophy or as I call it, RSD. You may know me personally or you may not, but who I am is not really important, only the fact that I live in chronic pain matters.
I need to tell you several things, including what I have learned from having RSD, but first I am going to tell you what it’s like to be a teen living with RSD.
Everyday, the average teenager wakes up, gets dressed, goes to school, talks to friends, participates in sports and other activities, goes home, does homework, and then goes to sleep. However, the RSD teenager is not able to do these things. Everyday I wake up and the first sensation of the day is pain. I get dressed slowly because clothes and socks are such agony to pull on against the skin. School is a blur and I go tiredly home since I can’t participate in any type of sports. When nighttime comes, the war between pain and exhaustion battle inside my body. Pain wins… sleep loses.
Are you beginning to understand me yet? Now, before you start making a stereotype of RSD kids, I need to clear up a few things that tend to be common misunderstandings…
RSD kids rarely look sick, maybe tired, but not sick. Please do not make comments such as, “ but you look like you feel better!” When I feel better, I will say that I feel better. Also, remember that like any other teen, I want to look nice I don’t want to look sick.
I have also received remarks like this, “ well you can’t be in too much pain if you’re still smiling!” Now, let me ask you this; have you ever been sick with a cold or flu? You are probably thinking about how grouchy and depressed you were in the five-day span of that cold. However, most of us with RSD have been in pain seven days a week, 24 hours a day for weeks, months, or years. I cannot be depressed all the time. I try to be positive and happy for my friends and family, even though there are times that I’m not as happy as everyone assumes.
I would like you to understand that RSD is a neurological disorder, not a psychological disorder. Remember that while depression may occur after RSD and might hinder recovery, depression does not cause RSD. Also, being sad or depressed after the onset of RSD does not mean that any of us are crazy… wouldn’t you be discouraged if you spent every day, every hour, and every minute in pain without ever knowing when or if you will recover?
Please don’t expect me to act the same and think the same as I did before RSD. Constant pain can make me annoyed and sometimes I get frustrated easily. Meds can make me drowsy, dizzy, or might give me headaches. I might miss school for doctor appointments or physical therapy. When I do come back to school I am often tired, so if I can’t carry on a conversation or concentrate in class, please try not to get impatient with me.
Have you seen me walking? Or have you seen me with shoes and socks on? Please don’t ask me absurd questions like, “ does that hurt?” Of course, it hurts. It hurts so much sometimes that I don’t think I can bear the pain anymore and I wish that I could just curl up and die. Please understand that I have to do things such as trying to wear a shoe or sock or walking to get even a little better. I know I have to do these things, but it is extremely painful because of the hypersensitivity. Please don’t act like you understand everything about RSD because you don’t. I don’t mean to sound so harsh, but reading an RSD brochure or looking through an RSD info site doesn’t make you and expert in pain until you have experienced it. Unless you are and RSD’er, please don’t try to keep offering me recent advice or a “miracle cure.” I understand you want to help me, but only I know what helps me and what hurts me.
An RSD’er once said that sometimes with RSD you have to take two steps back and one step forward. This statement holds a lot of truth to it. RSD is unpredictable and none of us who suffer with it ever know how we will feel from day to day. I think that is the hardest thing for anyone to understand though, except for those of us who suffer with RSD. Everyone thinks that once we get on the road to recovery, we should stay there… but RSD differs greatly from a football injury or a ligament strain and we are going to have many setbacks. One day, I might be able to move around a lot, the next I can barely get out of bed because the pain is so bad.
Don’t ever accuse me of not wanting or not trying to get better. You’re not with me all the time and you don’t know how much I have tried and continue to try to get better. Small things like trying to desensitize my skin and letting water from a shower flow over my leg or just lying my foot on the ground is an achievement for me, but of course no one ever sees that. They just want me to be able to jump one day and be healed. You don’t know the pain, the loneliness, the fear, or the nightmare RSD is. I remember the first time I was diagnosed with RSD. That was horrible.
It all happened late one night at homecoming in the seventh grade. I was running around having a great time watching football, and being with my friends. Then something happened that changed my life forever. At first it felt only like I twisted my ankle, then the pain spread up my leg to my knee. The pain was so bad but I didn’t want to admit defeat so I kept playing and trying to have a good time. I didn’t think anything about the pain until it got worse and worse, so bad I could barely stand. I was stupid. Instead of going home I stayed for the bonfire that was after the game. Then after that I got a ride with one of my friends and went home to see if rest would make my leg feel better. In the morning the pain was worse than it was the night before. I couldn’t go to school and my mom took me to the doctors. I couldn’t put any pressure on my leg so I had to hop everywhere until I got a pair of crutches. The doctor thought it was just a sprain like I had, so he wrapped an ace bandage around my knee. After a few days the pain was still just as bad so I went back to the doctors. Now they thought maybe it was broken so I was sent to the hospital to get X-rays. There was no break anywhere and that is where the RSD ‘theory’ comes in. I had to have a ton of tests and all of them read RSD. That was when I was diagnosed with the worst possible neurological disorder a kid could get. Life was not the same anymore. I blamed everyone for my problems even though they had nothing to do with it. But then I learned that my problems were mine and mine only. I learned that I had to be strong in order to keep my life semi-normal. It was hard but here I am today, I am resilient, a survivor and determined not to quit fighting…
And what I really need is for you to understand me. Remember it is still me inside this body filled with awful pain and I still like laughing, talking, and doing ‘normal’ things. Remember that I’m still me even though I have RSD.
I have learned that every child with RSD has a story almost exactly identical and if his or her name weren’t there, the stories wouldn’t be able to differ much. I have also learned that life should be taken in stride. So, my time on earth, on fate depends. But all that happens in the space we are meant to live depends on me and choices I face. For better or worse they’re mine to make. So my time on earth will be well spent and when I leave this world I’ll leave with no regrets. And I will continue to learn about what RSD teaches me…