Dear Doubter

I recently wrote the letter, Dear Doctor, Welcome to My World, a message to the doctors I’ve dealt with who were clueless when it came to RSD/CRPS. Today’s letter goes out to all the everyday people who claim our pain is in our heads. To the friends who don’t understand. To the family members who think we’re exaggerating. To anyone who has ever doubted the pain we feel. Dear Doubters, this is for you.

Dear Doubter,

Hey, it’s me. The girl with the pain that’s “all in my head.” The one you’ve blown off and called a faker. Well, this “faker” has a few words for you. The first matter to be discussed is the reality of the situation. I don’t care what degree you have, or what people you’ve met. There is no reason to tell me that the pain I feel is simply made up. Have you been in my shoes? Have you stayed up through the night, unable to put out the fire in your body? Until you have, you do not have the right to judge or comment on my condition.

Let me ask you a question…have you ever had a headache? How about a stomachache? Can you see those ailments? Not really. But somehow, when you come down with such calamities, it is expected that people believe the discomfort you are experiencing. How is it different for my situation? Just because you can’t see the pain, that in no way means that it isn’t there. And for me, it’s not as simply as a one-day pain streak. No, I’m not that lucky. This pain is chronic, meaning long-term. Imagine having that stomachache, plus the headache, in addition to other pain throughout your body, the highest pain imaginable. Now imagine having it for days, months, years on end, with no sight of relief. That is what I am dealing with. And somehow you still doubt me?

It’s true that I don’t always show my pain. I don’t bring it up in every conversation, I’m not always screaming and crying. I do have moments of laughter, and I try to keep a smile on my face. I know that this lack of displayed pain may make it seem like I’m not really hurting. After all, how could someone in that much pain be able to do normal things? If it was really that bad, I’d never get out of bed…right? Wrong. It is that bad. And I do want to stay in bed, but I can’t. I can’t because I have things that need to be done. I can’t because people like you doubt me and criticize me if I’m not pulling my weight in society. So, despite the flames that are raging through my body, I do my best to put on a mask and do what needs to be done.

Please know that not all illnesses are visible. Not all pain is obvious. There are things under the surface that I struggle to keep hidden. I know that you don’t understand what I’m going through. In order to understand such a horrible feeling, you’d have to go through this pain yourself. This disease is not something I would wish on my worst enemy. But even if you can’t understand, you can give me the gift of belief. You can give me the benefit of the doubt and believe that my pain is real.

I need you to believe me. It is so hard, so exhausting, to be perceived as an attention-seeking faker. I need you to stop doubting and start believing me when I say it hurts. I need you to be on my side, to fight for and with me rather than against me. I need you to put away your so-called medical expertise, your past experiences with people who really were faking illness, and your personal issues and look at me. Believe me. Trust me. It’s hard enough to feel as if you’re on fire, and dealing with doubters is like adding more fuel to the flames.

Support is powerful. It’s much easier to fight a battle when you’re not alone. Thanks for reading…and please consider these words the next time you’re tempted to doubt what you do not see.

Sincerely,

The Girl With The Pain

You are Irreplaceable {World Suicide Prevention Day}

Warning: This post deals with the topic of suicide. If reading about this is too difficult for you, please feel free to click out of this post. I understand that this is a sensitive subject.

Today is World Suicide Prevention Day, a day that is near to my heart. I’ve known people who have taken their lives, I’ve visited friends in the aftermath of their attempts, and I have come very close to taking this way out myself. Now, I’m not going to go into the debates of whether suicide is selfish, or if it’s a choice, or anything like that. I’m simply going to write a letter to those who may be reaching their limits, hitting rock bottom.

The message is simple: You matter, you are loved, and nobody in this world can replace you.

Dear Friend,

I see you there, overwhelmed with the struggles of life. I know you are tortured with pain and you just want it all to end. I know that life hasn’t been all that you imagined. But please hold on. Please don’t give up. One day this agony will end and you will see the sunshine again. The pain that you feel today will soon be washed by the joys of tomorrow, but you have to keep going.

Do you know how loved you are? You might not feel it right now, but there are people all around who care about you, even people you don’t even know. You add a piece to this world that nobody else could. You are not alone, no matter how dark things may seem. You are important, you are loved, and you make a difference.

My friend, I am not going to tell you that I know exactly how you feel. I’m not going to pretend that I know your life, or your situation. But what I will tell you is this: I was once the girl with the bottle of pills, the hidden blades, the fake smile on my face. I wrote my letters, made my plans, and decided that I just couldn’t handle another day of life. The pain was so intense, the depression so strong, the hope so gone. I’m not saying I know exactly what you’re going through, but I do know how I felt when I hit rock bottom. And it was the worst feeling in the world.

I am so glad that you are alive. You may be thinking, “Sure, but you don’t even know me. Why do you care?” I care because you are a person with a life to live, people to meet, and a story to tell. I am glad you are alive because one day, you’ll be able to offer hope to someone who is lost, a listening ear to someone who is lonely. But you have to hold on. This is not the end. You are absolutely irreplaceable.

I would like to apologize for every person, every situation, every word that has led up to this point of breaking. I’m sorry for the person who said that mean thing to you, the experience you couldn’t control, the words that can’t be taken back. I’m sorry that life has been so rough on you. I’m sorry that things have gotten so bad that you feel like death is the only way out. It’s not. Better days are ahead, even if you don’t believe me.

I know that my words don’t mean much right now. It’s hard to see past the fog of pain. I just hope you know, truly know, that this is not your only option. There are ways to deal with the hurt. Reach out to someone, grab a pen and paper, write out your feelings. Don’t hold them in. It’s okay to let your guard down. It’s okay to admit that you’re not okay.

Dear friend, you are stronger than the voices that tell you you’re not good enough. You are stronger than the feelings that try to overtake you. You are stronger than the pain. You WILL get through this. Take things one second at a time, one breath at a time, one moment at a time.

Please know this-You are not a mistake. You are loved. You are important. And I am cheering for you, thinking about you, and hoping that you soon see the beauty of life again. Please don’t give up. I am always here if you need a shoulder to lean on.

Your friend,

Rachel

A Letter to Those Newly Diagnosed with RSD/CRPS

This month marks the 8 year anniversary of my initial RSD injury. Today I found out about another warrior who was just diagnosed. My heart aches, knowing the verwhelming feeling that comes with such a complicated diagnosis. So, to anyone who has recently had the unfortunate experience of having a doctor say, “you have RSD/CRPS,” this is for you.

 Dear Warrior,

This message is for you. Yes, you are a Warrior because you have just stepped onto the battlefield of one of the biggest wars you’ll ever fight in. The war against RSD/CRPS. Things may look bleak and confusing at first, but it gets better. These big words, “Reflex Sympathetic Dystrophy,” or “Complex Regional Pain Syndrome,” can feel daunting. What do they all mean? Why are there different phrases for the same diagnosis? While you may feel relief that you finally have an answer to your pain, you may be feeling a greater weight knowing that this isn’t just a broken bone or muscle strain. The swirl of emotions can hit you pretty hard, but take some deep breaths and approach it all one day at a time.

Know that you are not alone. Although it’s true that you’re now part of a vicious battle, you are fighting alongside millions of other valiant warriors. You don’t have to do this on your own. There are always people who are here to support you and walk with you as you navigate your way through this new world of chronic pain. Reach out to me, reach out to others. Don’t be afraid. You are not alone.

There may be people who don’t understand, or who might not believe that anything is wrong. Doctors, even, can be discouraging with their words and attitudes. Our pain is very real, this disorder is very real, but for those who don’t experience it firsthand, it can be difficult to comprehend. Don’t allow the negative comments of others to get you down. It’s hard to grasp the depth of this ‘mystery’ diagnosis, but know in your heart that you are not going “crazy,” this is not “all in your head,” and none of this is made up, even if people don’t understand.

If you are like me and head to Google, prepare yourself. There are so many websites and articles about RSD/CRPS, some better than others. There are some amazingly helpful organizations and websites (The RSDSA is wonderful– RSDS.org), and there are also places that will feed you information that is neither helpful nor true. Take everything with a grain of salt unless it is backed up by evidence.

The funny, frustrating, confusing part about this disorder is that no two people have identical experiences. For some, one treatment is a miracle and they jump right into remission. For others, they might try that treatment along with five others before they find something that helps. You never know until you try it. There are some medications and treatment options that have high success rates and might be worth pursuing before others, but just know that everyone has a different journey. This isn’t to depress you or discourage you; in fact, I hope to encourage you with the fact that you could be one of the lucky ones to find a treatment that works early on. They say early treatment is key; I believe it.

This journey can be scary. It can be sad, it can be disheartening, it can be confusing. It can also bring joy into your life that you never knew was possible. I know, I know…how can you say that there can be any sort of joy in all of this? Well, have you ever felt the incredible rush of emotion after taking your first step in months? Have you felt the pride of beating the odds? These things will come later on, so hold onto hope. Even if the elusive remission doesn’t come, or takes longer than expected, there can still be plenty of happiness along the way. You’ll meet new people with whom you will share deep bonds. You’ll be able to share your story and help others. You’ll appreciate the small things more as they become the big things.

What I really want to tell you, dear Warrior, is that this is not a death sentence. It does not mean that you have to be stuck in hospitals and doctors’ offices forever. I want to tell you, brave Champion, that it is possible to live a full, happy life despite the pain. You can still do the things you enjoy and love those close to you. You may have to adjust things a bit, but there is so much greatness inside of you and you will make it. I promise. So fasten your seatbelt and hold on tight, because this is going to be a bumpy ride…but in the end, you’ll come out stronger than before. Grasp onto hope and never, I repeat, never give up.

I’m here with you in the battlefield, cheering you on and waiting anxiously for the day when a cure is found and this battle is won for good. Until then, stay strong, my friends. Stay strong.

With well wishes for strength and courage,

Rachel, a fellow RSD/CRPS Fighter