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
College on Crutches 