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To the Frustrated Parent of a Child With Chronic Pain

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I never used to get it. Why are you so frustrated with everything when I am the one battling chronic pain?  I am the one who has to live with this monster 24/7, not you! So why are you mad at me just because I want to get this treatment and you don’t want me to? It’s my life, not yours!

When I first developed complex regional pain syndrome (CRPS) at the age of 14, life just went on for most of the time. I complained of continuous pain and you would tell me to stop complaining and I would get mad at you, and then you would get mad at me for having a bad attitude. I could tell as the years went on, not only would I get more frustrated, so would you, and it took me almost five years to truly understand why you were frustrated, too. During the two years it took me to get diagnosed, I could see you get more and more upset with every positive test result and with every doctor who said I was fine, but you would always tell me that it was a good thing the results were positive. I knew deep down inside you were mad that nobody could tell you what was wrong with your baby girl.

Finally, at the age of 16 when I finally got a correct diagnosis, I thought the days of fighting and frustration would be behind us, but I was far from right. At that time, it became a fight to find a treatment that would actually work. At that young age, I thought I would do what the doctor said and I would be healed, but when I found out that treatment and the next treatment and pretty much every treatment after that wasn’t working, I got angrier and angrier and I would take it out on you. Then you would get mad because you just wanted to get me help and wanted everything to be back to normal.

Life hasn’t been “normal” since then. There would be days we would spend sitting in a doctor’s office or hospital, and the longer and longer we sat there, the more and more you just wanted to get up and leave.  Some days I would come home crying because people were spreading rumors about me and you would sit there and cry with me as if the rumors were about you. Seeing me cry hurt you just as bad as hearing the rumors. Hearing the words “My whole body hurts” made yours hurt, too. After a failed treatment and seeing the disappointment on my face, it upset you because I was still in pain, and sometimes it was even worse than before the treatment.

I have begun to understand that yes, I have to live with this disease every day of my life, but you are living it, too. As a parent, you hurt when your child hurts, you cry when they cry, and you get frustrated when they get frustrated. I would be more worried if this wasn’t the case, because that would have meant we weren’t as close as we are or that we weren’t fighting the same battle. So to any frustrated parents out there, just know that your child may not understand why you are mad at the time, but in the future, they can completely understand.

To the frustrated child, your parents are frustrated because they are trying to do everything they can to help you, without success. Instead of both of you being upset with each other and not speaking, it is better to sit down and talk it out. Give each other a hug and just know your parents want what’s best for you.

I want to thank you for being the frustrated parent because honestly, without you, I wouldn’t have been able to fight as hard as you for a diagnosis, doctor, treatment, etc. Without you, I don’t know where I would be in life!

mom wearing blue tank top and daughter wearing orange shirt
Nora and her mom.

Follow this journey on CRPS Does Not Own Me.

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Originally published: March 23, 2016
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