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A Letter to Children Diagnosed With CRPS, From an Adult Who's Been There

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Dear child with CRPS,

You are young, and this diagnosis has not come at an ideal time in your life. I mean, is there an ideal time to be diagnosed with complex regional pain syndrome (CRPS) — one of the most painful conditions known? Let me assure you though, everything is going to be OK. You will get through this.

It’s OK to be angry, to scream, to shout and be sad about this diagnosis. Acceptance of a chronic illness takes time and processing. It is OK for you to take this time to figure out what this diagnosis means for you, but also remember you can always ask for help while you are on this journey.

Don’t be afraid to take medication your doctor has prescribed, to talk about your condition, and to tell people what is really going on inside of you. From my 10 years having this condition, I have learned that you need help and you cannot do this alone.

Another important thing to remember is to not let people tell you cannot do something because let me tell you, you can do anything you want. I have had so many people tell me I cannot be a nurse due to my chronic pain condition, but here I am, a successful registered nurse in the emergency room, despite many pain flares along this journey. But also remember it is OK to say “no” to doing things if you do not want to do them. It is all about striking a balance that works for you.

You control your life, not your pain. This is a hard thing to understand, and it took me years to figure out how to do this. And honestly, I still struggle with this some days. Growing up with your pain, becoming an adult with your pain, beginning to not remember life without being in pain are all difficult and extremely sad and frustrating things to face. But just know there are others who understand what you are going through and want to help you through this journey of life with chronic nerve pain.

Your CRPS Friend

Originally published: November 30, 2019
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