Kissa da Fighting Fish

An Open Letter to Our Family & Friends

Many print this out to hand to family members, or put on a bulletin board or on their refrigerator's at home to continual remind our families


Having RSD means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident most people do not know even a little 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 still 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, I'm still me stuck inside this body. I still worry about school and work and my family and friends and most 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 and, in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I am happy. That's it......it doesn't mean that I am not in a lot of pain, or extremely tired, or that I am getting better or any of those things. Please don't say "oh, you sound better!" I am not sounding better. I am sounding happy. If you want to comment on that, you're welcome to do so.
-Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. And, just because I managed to stand up for 30 minutes yesterday doesn't mean I can do the same today. With many 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.
-Please understand that RSD is variable. Its quite possible (for me its common) that one day I'll be able to walk to the park and back, while the next 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 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, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, or try these classes, may frustrate me to tears and is NOT correct. I am working with my doctor and physical therapist and am already doing the diet and exercise I am supposed to do. Another statement that hurts is "you just need to push yourself more, work harder..."RSD includes nerves and circulation, and our bodies don't repair themselves the way yours do; pushing myself can do far more damage than good and could result in recovery time of days, weeks or months.
-Please understand that RSD may cause secondary depression (wouldn't you get depressed if you were hurting for months and years on end?) but it is NOT created by depression.
-Please understand that if I say I have to sit down/lie down/take pills now, I have to do it RIGHT NOW--it can't be put off or forgotten just because I am out for the day (or whatever). RSD does not forgive.
-Please understand that I don't want you to suggest a cure to me. Its not because I don't appreciate the thought and its not because I don't want to get well. Its because I have had almost every one of my friends suggest one at some point. At first, I tried them all, but then I realized I was making myself sicker, not better. If there were something that cured, or even helped, all people with RSD would know about it. This is not a drug company conspiracy; there is world wide networking (both on and off the Internet) among people with RSD, and if something worked we would KNOW. If, after reading this, you still want to suggest a cure, then do it, but please don't expect me to rush right out and try it. I'll take what you say and discuss it with my doctor.
In many ways I depend on you -- people who are not in pain. I need you to visit me when I am in too much pain to go out. Sometimes I may need you to help me with the shopping or the cooking. I may need you to take me to the doctor or the physical therapist. You're my link to the outside world.

And as much as possible, I NEED YOU TO UNDERSTAND ME!