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An Anonymous Letter

To anyone without RSD:

Hello,

I do not know who will read this letter or who they might be. I do not even know if anyone will pay any attention to the contents of this letter, but if you read this, I ask that you try to read it carefully and understand it.

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. You see, I have learned that every child with RSD has a story almost exactly identical and if his or her name were omitted, the stories would not be able to differ a great deal. So I have chosen to remain anonymous, speaking for all of us kids in pain. You are welcome to print out this letter to give to a friend, family member, teacher, or even a medical professional to help them understand us a little better. I need to tell you several things, but first, I am going to tell you what it is like to be a teen living with RSD. If you can, please transport yourself to the RSD world for the next few minutes.

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, the teen wakes up and the first sensation of the day is pain. The teen gets dressed slowly because clothes and shoes are such agony to pull on against the skin. School is a blur and the teen tiredly goes home since he or she can't participate in any type of sports. When nighttime comes, the war between pain and exhaustion battle inside the teen's body. Pain wins....sleep loses.

Are you beginning to understand us yet? Now, before you start making a stereotype of RSD kids, I need to clear up a few things that tend to be common misconceptions or misunderstandings....

RSD kids rarely look sick, maybe tired, but usually 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 do not want to look sick.
I have also received remarks like these," Well, you can't be in too much pain if you're still smiling!" 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, almost 24 hours a day for weeks, months, or years. I cannot be depressed all the time. Quite frankly, I try to be positive and happy for my friends and family, even though there are times that I am not as upbeat 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 do not expect me to act the same and think the same as I did before RSD. Constant pain can make me irritable and sometimes I can get frustrated easily. Meds can make me drowsy, dizzy, or might give me stomach aches and headaches. I might have to miss school sometimes for doctor appointments or physical therapy. When I do come back to school, I'm often tired and sick, so if I am unable to carry on a conversation or concentrate in class for a long period of time, please try not to get impatient with me.
Have you ever seen me walking? Or have you seen me with shoes and socks on? Please do not ask me absurd questions like," Does that hurt?" Of course, it hurts. It hurts so much sometimes that I don't think that I can bear the pain any more 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 ― and I know that I have to do these things ― but it is extremely painful due to my hypersensitivity and severe pain.
Please do not act like you understand everything about RSD because you do not. I don't mean to sound harsh, but reading an RSD brochure or looking through an RSD info site does not make you an expert in pain until you have experienced it. Unless you are an RSD'er, please do not try to keep on offering me recent advice or a "miracle cure." I understand that you want to help me, but only I know what helps me and what hurts me. Some things that might help other RSD kids will only hurt me and what might help me will only hurt them.
An RSD'er once said that sometimes with RSD, we 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 this is probably the hardest thing for everyone 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 walk around a lot, whereas the next day I can barely get out of bed because the pain is so bad.
Please do not ever accuse an RSD'er of not wanting or not trying to get better. You are not with me all the time and you do not 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 the RSD affected extremity or just laying a foot on the ground is an achievement for us, but of course no one ever sees that. They just want us to be able to jump up one day and be healed. Let me state once again: Don't ever accuse an RSD'er of not wanting or not trying to get better." You do not know the pain, the loneliness, the fear, or the nightmare that RSD is.

And please, what I really need is for you to try as much as possible to remain my friend and understand me. Please remember that it is still me inside this body filled with awful pain and I still like laughing, talking, and doing "normal" things. Please remember that I am still me even though I have RSD.

~ your RSD friend ~

"Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we prefer only to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place."

SUSAN SONTAG, Illness as Metaphor