Today Is International Fibromyalgia Awareness Day

2011 May 12
by Jenny

I wish I could write a brilliant post to mark this day, but unfortunately all of my energy and resources are tied up in Being Really Sick Today.

So instead, I’m offering a random sampling of things to both honor all of us who suffer with this excruciating illness, as well as hopefully help increase understanding for those of you who love us and take care of us.

1. If you’d like to make a donation to help support further research on fibromyalgia, you can go to the National Fibromyalgia Association donation page. (I have nothing to do with this. I’m just pointing the way for people who’d like to donate. I get nothing from it.)

2. If you’re on Facebook you can go “like” or just check out the “May 12th – International ME/CFS & FM Awareness Day” page.

3. You can copy the two images of ribbons here and place them on your online stomping grounds.

4. You can go to theĀ  “But You Don’t Look Sick” website and read about The Spoon Theory, which is the best piece I’ve ever read on how to explain to someone what it’s like living with this illness.

5. You can read, “A Letter To The Normals”. I’ve seen this around the Internet in a few places, so I’m not exactly sure who the author is.

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 the 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 FM 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.

6. You can read this interview which gives more of a scientific explanation of fibro, what we know about it at this point, and what the current treatments are.

7. Or, from my Internet friend, Jacqueline, ”
.send a virtual hug to anyone you know who may be suffering with fibromyalgia pain….it’s the best, most pain free way to show you care.”

 

 

3 Responses leave one →
  1. 2011 May 12

    {{{HUGS}}}

    ;o)

  2. 2011 May 12

    Sending a virtual hug.

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