The Open Letter To Those Without CFS/Fibro ...
Please go here to read information about the Open Letter and its cousins and translations, and also how to get your own copy printed on a poster.
Having CFS means many things change, and a lot of them are invisible. Unlike AIDS and Cancer, most people do not understand even a little about CFS 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 I might not seem like great company, 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. I may be tired. I may be in pain. I may be sicker that ever. 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. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. 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 chronic illnesses are 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, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. CFS may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, 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 doing something. CFS does not forgive.
Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.
If you want to suggest a cure to me, please 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 CFS 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 CFS, 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.
Please understand that getting better from an illness like this can be very slow. People with CFS have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you - people who are not sick - for many things.
But most importantly, I need you to understand me.
If you liked this open letter, you might want to read one of the versions people have adapted for other illnesses, or other languages, take a look at the open letter options page.
The Open Letter To Those Without CFS/Fibro … by Ricky Buchanan is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 2.5 Australia License.
5 Pingbacks to The Open Letter To Those Without CFS/Fibro ...
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[...] Open Letter To Those Without CFS/Fibro - The original “Open Letter”. [...]
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[...] to all that, an attack of chronic fatigue & an unsettled tummy as a result of my gluten intolerance. Must have eaten something that had [...]
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[...] those who want to learn how they can start, please read Ricky Buchanan‘s The Open Letter To Those Without CFS/Fibro right [...]
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[...] An Open Letter To Those Without Invisible Disability Or Chronic Illness … by Ricky Buchanan is licensed under aCreative Commons Attribution-Noncommercial-Share Alike 2.5 Australia License. Based on a work at notdoneliving.net. [...]
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[...] of the most important articles on this site is An Open Letter To “Normals” … things I’d like you to understand about me before you judge [...]
Hello, next week is carers week ans we are in the york Minster for a service for unpaid carers would you mind if we printed your letter for our display.?
many thanks katie (secretary york carers forum)
@Katie: You're welcome to print it for the display. You might like to see the more general 'open letter' and print that instead - see the Options page in the link above these comments.
[...] Open Letter To Those Without CFS/Fibro - The original “Open Letter”. [...]
Nice to meet you, Ricky. (I am leaving a suggestion on the ABF.) Love the letter. I have a site with a similar purpose. Maybe I can link here sometime.
Take care, Kelly :D
You said it!! I have rhumatoid arthritis and having a chronic illness is tough especially when you are young (i'm 35) i'm going to show people this letter and maybe they'l understand a bit more! I think it should be printed and left at hospitals and doctors surgerys for all to see!!
In agreement with Margaret O'Neill. I have R.A. & 48.
[...] to all that, an attack of chronic fatigue & an unsettled tummy as a result of my gluten intolerance. Must have eaten something that had [...]
[...] those who want to learn how they can start, please read Ricky Buchanan‘s The Open Letter To Those Without CFS/Fibro right [...]
[...] An Open Letter To Those Without Invisible Disability Or Chronic Illness … by Ricky Buchanan is licensed under aCreative Commons Attribution-Noncommercial-Share Alike 2.5 Australia License. Based on a work at notdoneliving.net. [...]
[...] of the most important articles on this site is An Open Letter To “Normals” … things I’d like you to understand about me before you judge [...]
as somwone who is now involved with somwone with cfs as a helper understanding and doing help is very very top of the list i did not. my thoughts were get on with it try and as hard as this comes I WAS SO WRONG if my attitude can change any one can just do it