Dear Doctor, Welcome to My World

After experiencing one too many doctors, nurses, and techs that looked at me like I had twelve eyes when I told them about my RSD/CRPS, I thought I should write a little note to them. This isn’t for the awesome docs out there who know what I’m dealing with; it’s for the doctors who don’t understand. It’s for the people who write “RDS” or “Sympathetic Reflex Dystrophy” on my chart, pretending to know what they’re doing. Dear Clueless Doctor, Nurse, Tech, or other medical professional, this is for you.

Dear Doctor,

Hi there. It’s me, your challenging mystery patient. The one with the disease you’ve never heard of. I hope you choose to admit to the fact that you’re clueless, because that’s better than pretending. Trust me, it’s not hard to tell when you’re trying to make me think you’ve heard of it, when the first time you saw the letters “RSD” or “CRPS” was when you glanced at my chart before seeing me. I sincerely hope you take the time to look up my disorder and learn about it. You never know when you’ll have another patient like me, and it would be great if you could be able to tell them, with confidence, that you know a bit about this monster that we face daily.

I know that it’s hard to understand something so complicated, so bizarre. But please try to imagine what I’m going through. You don’t see the hours I lay in bed, crying, desperate for relief. You don’t see me as I try to get through a shopping center without someone making a comment about my leg. You don’t feel the sadness that I experience when I can’t participate in a social event. You don’t know the strength it takes to keep fighting, to keep living, when you are living with such a painful condition. You don’t know the heartache of wondering if you’ll ever get better. You don’t know the defeat that comes with each doctor who gives up on you. You don’t know what it’s like to be me, but please at least try to understand before you label me as “the crazy one” or tell me it’s all in my head.

When you see me and read about my diagnosis, please don’t just brush me off. Don’t attribute all my symptoms to my pain disorder. True, it can cause a lot of problems. But there are those rare instances where it’s not all about the RSD/CRPS. There’s something more, and if you simply dismiss my symptoms, you could miss something big. Don’t shy away and give up on me just because I’m not your typical cookie-cutter case. Please be willing to work, to investigate, to help me.

When I say my pain is a 10 out of 10, I’m not exaggerating. In fact, the pain is most likely even higher than that, but you confine me to those numbers. Just because I’m not screaming and wailing, that doesn’t mean I’m not crumbling on the inside. I’ve just learned how to hide the pain. While we’re at it, number or no number, please know that my pain is real. It is not in my head, nor is it a ploy for attention or a plan to get drugs. No, this pain is real. Have you ever touched a hot stove on accident? You know that your automatic reflex is to pull your hand away. For us, though, it’s like we are glued to the stove, unable to pry our bodies away from the misery. I feel like my body is on fire, and no amount of pain medication seems to put out the flames. Even if you can’t see it, my pain is real. Very, very real.

Please know that I’m not trying to be difficult. I’m not intentionally being high maintenance just because I feel like it. I need to advocate for myself, so please understand that there are certain needs that I need to be met. If not, things could take a turn for the worse. I need you to listen to me when I ask you to please not touch me, or to use a smaller needle, or to not apply ice to my body. I need you to hear me when I say that I need you to stop bumping my bed. I need you to educate yourself on my condition. I need you to accept my answer when I decline a treatment or a medication that I know I’ve had adverse reactions to in the past. I need you to allow me the freedom to have a say in the plan, because let’s face it, med school or no med school, I know my body better than you, and chances are, I know more about RSD/CRPS, too.

Now, I’m not trying to undermine the fact that you’ve gone through years of hard work to have your career. I understand that you are probably excellent at your job…when you have a case you are familiar with. But RSD/CRPS? It’s not something they spend much time on in med school. It gets tossed out in the whirl of more common ailments. Chances are, if you did happen to cover it in school, it was only a small paragraph in a book with a thousand pages. That being said, yes, I do probably know more. I’ve spent thousands of hours since my diagnosis scouring the internet, reading books, and talking to people to find out more information about this horrifying disease that is raging through my body. So while I respect the fact that you’re qualified to do your job, I need you to also respect the fact that I do know what I’m talking about. Don’t dismiss my ideas and concerns just because you have a big head from getting that special degree. Really, it’s okay to not know everything. I don’t expect you to be an expert on my little-known condition, but while I’m your patient, please try to learn and let me step in to give my two cents. I’ve done more than just look up my symptoms on WebMD.

I hope you realize that none of this is easy. It’s a nightmare to live, a pain to treat, and a challenge to comprehend. But if we work together, maybe we can figure out a plan that works. I hope you take this to heart, learn what I’m going through, and become prepared for the next time a mystery patient is sitting in your office.

Thanks for reading.

Sincerely,

An RSD/CRPS Warrior who is tired of not being understood