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 than 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. Fibromyalgia 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. Fibromyalgia 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 Fibro 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 Fibro, 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.

Please understand that getting better from an illness like this can be very slow. People with Fibro 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.

 

 

 

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Comments:

AvieJ...
Apr. 8, 2009 at 3:25 PM

I have lupus and while I am no where near the state you are in ~ I can still sympathize with you on a lot of what you wrote!  I get so tired of people saying things like "but you look fine" ~ grrrr....makes me so mad!  You can't see my pain or my fatigue but that doesn't mean it is not there.  I am so sorry you have to endure this everyday and I have so much respect and admiration for you that you do it and with so much dignity and such a posititve attitude.  God bless you!

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Kitty...
Apr. 11, 2009 at 2:30 AM

 Hello! My name is Lisa and I just joined the Siggy City group/ I have fibro also and can totally relate to how you feel. I have two grown daughters and they both think I'm crazy. I send them things to read and my youngest doesn't believe it even is a real thing. So no judgement here just support and understanding. Take care of your self. I was also wondering where you got your fibro graphics at the bottom there. I hope you have a good Easter weekend. Lisa - kittykrazy

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lovem...
Aug. 1, 2009 at 9:43 PM

Sounds like you could use a good group for depression support! I have it! 

http://www.cafemom.com/group/hereandthere

I have a great staff and the members are totally awesome ! Very supportive and we have ladies with all kinds of physical and mental illnesses.... please check us out ...

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