a letter to "normals"

Discussion in 'Fibromyalgia Main Forum' started by mamafurr, Jul 18, 2003.

  1. mamafurr

    mamafurr New Member

    found this while researching today.

    Letter to people that don't have FM and/or MPS:

    Text only file for printing.

    Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS/MPS and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand ...

    ... These are the things that I would like you to understand about me before you judge me...

    - Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable 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 sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

    - Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that 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 FMS/MPS does to you.

    - Please understand that FMS/MPS is variable. It's quite possible (for me, it's common) that one day I am 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 ill 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 this 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 loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

    - Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.

    - 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 because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would KNOW.

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

    In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me then I might not get to see you.

    ... and, as much as it's possible, I need you to understand me.

    This letter was modified (with permission) and published by Paula Payne in 1996 to become the "Letter to Normals". Since then it has been printed in various publications (with and without permission). Due to this fact, I would like to state that This "Letter to Normals" be used to help other people with FM/MPS as long as proper credit is given to Paula Payne and to Bek Oberin (Bek wrote the Open Letter To Those Without CFIDS.) for creating it.

    I get a lot of email about our "Letter to Normals."

    The people with FM usually tell me that this letter says what they always wanted to say, but never had the exact words to say it.

    I agree with them as I wouldn't ever be able to come out and say most of this stuff to anyone, but in a letter, it is easier to be straight forward. I was a little concerned that this might be a little on the blunt side, but some things just need to be said.

    When I first put this letter online, it was before my husband & parents understood just what FM was doing to my life. I felt so alone. Day to day life was frustrating not only because I felt bad, but I also had to explain myself to everyone, and it was hard for them to accept my limitations when "I look so healthy."

    I have gotten a mixed range of email from people who do not have FM. Most receive it well and want to understand who ever it is in their life that has FM. I did receive one email from a lady last year who said that it was rude. I apologized to her and explained that it is written truly in the spirit of helping others to understand what it is like to have FM. After I talked with her, she seemed to accept the letter as it was intended.