An Open Letter to The Me With Chronic Pain and a Genetic Disorder

Subject: An Open Letter to The Me With Chronic Pain and a Genetic Disorder
From: The Younger You, Full of Hope
Date: 1 Mar 2016

Dear me,

I’m here to tell you a story. A story you know all too well, but condensed. I can't say I understand. I can't say that I know the pain, because I don't. Not yet, for I am the younger you, the one who could do anything she set her mind to. The one who never knew medical terminology like you do now. But I will, and I can see the frame of mind you're in. You hate yourself. You hate your body and what it has put you through. When the pain in your chest first started, you assumed after the three month wait for the cardiologist there would be an answer. There wasn't. All you heard from your family was, “No news is good news!” and “Well it’s not your heart so it must be good!” But only you knew how you felt. You knew that it wasn't your heart and that there was some decency in that. Except there was one problem; you had no answer. You still couldn't play sports, you still couldn't continue doing what you loved. You hoped, test after test, that an answer would come. You started to give up after your first doctor told you it was all in your head. That defeated you. Were you mentally ill, were you crazy? You didn't know. Mom took you to a different doctor, and she sent you to the Complex Pain Clinic. There, you would get as close to an answer as you thought you ever would.

Chronic pain. They had a complex name for the specific kind that you had, but it’s lost on you now. You were told you were going to see a psychologist and a physiotherapist every two weeks, and hope that would help. It did, for a while, until you started to give up again. The pain team told you about this amazing clinic they had. Six weeks, intense physio and rehab to help train to live with pain. You saw hope, possibility. You took that possibility, and after about week three, your function began to soar. You saw hope in playing sports again; your favorite being basketball. You also met four other people who understood what you went through, for they also did. You're still friends with them all, although one is particularly closer than the rest. She is your best friend, the only person to really understand everything you go through. She’s the only one of your friends to not say “sorry” when you're becoming frustrated with pain. She knows exactly what you go through, and you must never let her go. I know that you can get angry and push people away when you're hurt and you get bad. But, I beg of you, don't do that to her.

After the pain clinic, you were extremely ready for basketball to come again. You just had one appointment left, one you had been waiting nine months for. The geneticist. That’s when you learned. Ehlers-Danlos Syndrome. You didn't think much of it, until learning you could not play contact sports. That hope you felt? It left, correction. It was crushed. The next few months were you trying to continue on, just like the pain clinic had taught you. But how could you? You learned basketball was no longer within your reach. It was only ever a dream now. Forever you keep remembering in your head, three games. That’s all you played of high school basketball, even though you have seven years experience going in and was expected to be a phenomenal shooter. This is something you will forever continue to struggle with, even when you are too old to play high school basketball.

I’m sorry for bringing that all up. I know this is something you still struggle terribly with. I didn't write this letter to bring up these terrible memories. I wrote this letter to remind you of me. I guess you could say the younger you. The one full of hopes to play college basketball. The one who’s parents would spend $500 just to go to a basketball camp because you loved it so much. My question for you; where did that hope go? I see you, depressed, ready to die. You just got accepted into college and yet you don't see a future. Why? Look back for a second. Look at that younger you. Remember that girl who could do anything she wanted if she really wanted it? She’s still in there. I’m here to remind you to look for her, and also to tell you this. Everyone keeps telling you, including your own parents, “Just push through the pain”. No. You don't have to push through the pain to get things done. You can do it at your own pace. I wrote this letter to you because of the pain you’re going through. Tomorrow, it will be exactly a month before your eighteenth birthday. Every person is normally excited, but you're not. You're terrified, because of the transition. The team you got used to, the team that you took a chance on in telling them everything you went through. They’ve helped, but as much as you won't accept that they’ve reached their helping capacity, you have to accept that. I just wanted to tell you this: Change is okay. Wanting help is okay. Don't let anyone tell you what you're going through isn't worth anything. It is, and it’s going to be okay. You're going to be okay. The pain isn't going away, but the support system you have built, it is everything. Never let that go. Just remember. Change is okay. You're going to be okay.

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