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To the Little Girl Just Diagnosed With Complex Regional Pain Syndrome

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I know what is going through your mind. You’re scared and confused. You just had all these large terms thrown at you and you don’t even really understand everything that was just said. It is going to take a while to process everything and even then, you may not fully understand what is going on. Your parents may not even understand, and that’s OK. That’s the way complex regional pain syndrome (CRPS) is: confusing. You will learn along the way while you experiment with treatments. You have probably been to many doctors before this with no answers. You feel relieved that you finally do have an answer, but nervous about what it will bring. It seems like it’s too much for a little girl to deal with. Nobody should have to deal with it, but only the strongest are chosen to have it.

You’ve missed days, weeks and even months of school going to doctor after doctor and you’re going to miss more. You have lost a few friends along the way and it’s going to happen in the future. Don’t worry, your true friends will stick around, and that’s who you’re going to rely on. There are going to be days when you feel you just can’t possibly move on, but you do it anyway. Not because you have to, but because you choose to. Sometimes nasty things are going to be said about you and that’s hard enough for anyone, let alone someone who is going through what you’re going through.

Here is some advice I learned along the way I wish I had known at the beginning. You are stronger than this disease and you are in charge! Don’t
ever think you aren’t. Be open about it to anyone who will listen. There are going
to be a few people who really don’t care about what you have to say, so when you
find someone who’s willing to listen and tries to understand what you’re going
through, take the advantage and talk about it.

Not only will it help you feel better, but you just informed one more person about a disease not many know about, and they are going to go home and tell their family. Dealing with CRPS will really teach you sympathy and compassion for others. This is a great quality to have in the world we live in today.  If people don’t believe you, don’t listen to them. You know just how real it is and just because someone is being difficult about it, just move on and don’t think about it. Find the best possible doctor you can find to treat you. If you don’t like a certain doctor, find a new one. You deserve the best care possible and it’s OK if it takes a few doctors before you find the one that’s right for you and you are comfortable with.

Whatever you do, don’t sweat the small stuff. Your nerves have enough on their mind while dealing with CRPS. Same goes for any stress you have. Everything will turn out OK, even if it’s not how you planned it to be. I cannot tell you how many plans I had for my life that got changed, but you will eventually end up where you need to be. Each day is a new day; don’t let the disappointments of yesterday affect your today. There will be bendy roads ahead and there will be hills steeper than you ever imagined, but once you reach the straight way, you will look back and be amazed at how far you have come!

young woman lying on stomach in front of trees

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Originally published: February 21, 2016
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