Friday, May 18, 2012

Letter to Normals

Normally I would just post a link to an interesting article I found, or quote it. But I found this to be right on target. I am going to post the entire article and a link below. This site has a lot of great information and coping advice. It is the Fibromyalgia Network. I belive this relates to those with any invisible illness/disorder/disease.
Letter to Normals: Getting Others to See Your Symptoms

"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 seam 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 welome.

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't move. With this one it gets more confusing.

Please repeat the above paragraph subsituting, "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 an 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 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 chonic 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 on 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.

I depend on you - peple who are not sick - for many things.

But most importantly, I need you to understand me."

(I cut out a few paragraphs as they are more specific to Fibro)

Letter to Normals

As I said last post...It's hard to understand the unknown. It's hard to understand what you've never personally experienced.

I will be walking for the Chiari & Syringomyelia Foundation's Unite@Nite Walk June 16th in my neighborhood. If you are walking Solo (as I am) or interested in joining a team, I have set up Team Chiari-Life feel free to join and help us reach our goal!!
To Donate, Register, or Sponsor please click here:
Team Chiari-Life

Check out DesignsByDayzi for Chiari Awareness items, proceeds go towards the walk!



  1. This is so true for me ( a chiarian ) thank you for posting love reading them especially this one I've been sick since 2001 and have always had problems with normal people

  2. Thank you for sharing this <3

    Something so well written can help a lot of people who suffer and their families in understanding what's going on inside our minds and bodies. much love<3