Open Letter to Normals…

I found this and thought I would share it with you all…

Open Letter To  Normals

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.