Having CFIDS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFIDS and its effects, and of those that think they know, many are actually mis-informed. 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 flat on my back in bed, 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 five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. 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 up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

- Please understand that CFIDS 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. CFIDS may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not created by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - don't you think that if I could possibly do it that I would?

- 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). CFIDS 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 CFIDS 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 CFIDS, if something worked we would KNOW.

- If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor. He's open to new suggestions and is a great guy, and he takes what I say seriously.

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. I need you to shop for me. I need you to cook and clean for me. I need you to take me the the doctors. Sometimes I need you to support me so I can walk to the bathroom without falling over.

I need you on a different level too ... you're my link to the outside world, if you don't set up my recliner in the lounge-room I can't watch TV and if you don't bring home a newspaper I can't read it. If you don't come to visit me then I won't get to see you.

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

(I've had a few requests from people with CFIDS who'd like to print this letter out and show it to friends. You're welcome to either email it to somebody or print it out and show it to friends and family as long as you keep it all together, and keep my name (Bek Oberin) and email address (gossamer@tertius.net.au) on it.)

(If anybody wants to print it in a newsletter, or use it for profit in any way at all, then you must contact me and get specific permission first.)

(Sorry to be so legalistic!!..)

O'Siyo, its me, Freedom Heart, again.
This page is an honour and a gift to me. For one thing, it is here among the Wolf Lodge, which is a home to me. Since it would not be possible for me to have this page, without Sil's work and generosity of Spirit, I'd like to be able to share some of my life with you through these pages...the things that are important to me, the people who are important to me - and some of my writings.

I would also like to take the opportunity to dedicate this page to the multitude of people who are suffering from Chronic Fatigue and Immune Dysfunction Syndrome and/or Fibromyalgia. Many of them will never have a voice that anyone will hear. Many of them have died. Many cannot even get up, let alone sit at a computer.

For all those without a voice, I choose to use mine. Please do see the links for this, and support those of us who cannot, in most cases, support ourselves. Our biggest job is getting recognition for this debilitating disease, and of course, finding a cure. But if people don't know about the disease, or how many of us are out here, we will not get the funding needed to continue research.

The CFIDS Association of America had their Second Annual Gala Non-Event this year. I liked that, because it was a celebration for all of us who could not participate, because we are too ill to do so. We RSVP'd that indeed, we could not attend! *smiling* The slogan for this was: "CFIDS is Nothing to Party About." It indeed is not.

It is a privilege and a responsibility to honour those without voices. So for all of those who suffer from CFIDS/FM, this page is dedicated to you.

This is an image map. There are four wonderful links to sites (Welcome to Jaustenville, CFIDS Pieces . . . to the puzzle . ., Listening to CFIDS, and Suite 101: Fibromyalgia Editor) that support CFIDS and Fibromylasia in this dedication.
If YOU CARE please take this graphic and the image map code and place them on your page.

Please help us to make a difference. Stand up and be counted

Thank you,
Freedom Heart Rising

Last Updated: June 12, 1998
Webmaster: Soft Silver Wolf
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