A letter to those who don't have RSD

I should have had this a long time ago. It would have saved me a a lot of headaches with a few friends who shall remain nameless. Or, lets just say that when names come up in my blog site, they have been changed to protect the innocent and the not-so-innocent. Anyway, on with the letter!

Letter to those who don't have RSD:

Having RSD means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people don't even know a little bit about RSD and of those who think they do many are actually misinformed.

In the spirit of informing those who wish to understand...These are the things I would like you to understand about me before you judge me.

-Please understand that being in pain doesn't mean that I am not a human being. I have to spend most of my days in incredible pain and exhaustion and if you visit I probably don't seem like much fun to be with. But, it's still me inside this body. I still worry about school, my family and friends of the time I'd still like to hear you talk about yours too.

-Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been in pain for years, I can't be miserable all the time, in fact I work real hard at not being miserable. So if your talking to me and I sound happy it means I'm happy. That's it! It doesn't mean that I am not in a lot of pain, or that I am not extremely tired, or that I am getting better or any one of those things. Please don't say "oh your sounding better". I am not sounding better, I am sounding happy. If you want to comment on that, you are welcome to.

-Please understand that being able to stand up for six minutes doesn't necessarily mean I can stand for 20 minutes or an hour. And just because I managed to stand up for ten minutes yesterday doesn't mean I can do the same today. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

-Please repeat the above paragraph, substituting "sitting", "walking", "thinking", "being sociable", and so on...it applies to everything. That's what RSD does to you, it takes all of that away from you.

-Please understand that RSD is variable. It is quite possible (for me its common) that one day I'll be able to walk to the park and back while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm hurting by saying "but you did it before". If you want me to do something, then ask me if I can. In a similar vein, I may need to cancel an invitation at the last minute. If that happens please do not take it personally.

-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, get an exercise machine, join a gym, or try these classes may frustrate me to tears and is not correct. I am working with doctors and am doing everything I need to do. Another statement that hurts is "you just need to push yourself more, do more, exercise harder". Obviously RSD deals with your muscles, and because my muscles don't repair themselves the way yours do, this does far more damage then good and could result in recovery time of days, weeks or even months. Also RSD may cause secondary depression (wouldn't you get depressed if you were in pain for months on end)? But it's not created by depression.

-Please understand that if I say I have to sit down/lie down/take pills now, I mean right now-- it can't be put off or forgotten just because I am out for the day or whatever. RSD does not forget me.

-If you want to suggest a cure to me, DON'T!!! It's not because I don't appreciate the thought and it's not that I don't want to get well. It's because I have ah almost everyone of my friends (and family) suggest a cure. At first I tried them all but they got me sicker or made no difference, not better. If there was something that worked my doctors would know about it, and so would I.

-If after reading this you still want to suggest a cure then do it, but don't expect me to rush right out and try it. I'll take what you said and discuss it with my parents and doctors.

In a way I depend on you-- people who are not in pain-- I may need you to help me with work I need to do or visit me when I am in too much pain to leave the house. In a way you're my link to the outside world.

As much as possible, I need you to understand me