Saturday, August 29, 2009

Open Letter to Normals About Fibromyalgia

There are the things I would like you to understand before you judge me...

Please know that being sick doesn't mean I'm not human. I may spend most of my day flat on my back and I might not seem like great company, but I'm still me stuck inside this body. I worry about school, work, family and friends and I'd still like to hear about yours.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable but it will pass. I've been sick for for so long that I can't afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I'm happy, it does not mean that I am well. I may be in pain and 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 mean that I can stand ten minutes, or an hour. It's likely 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, but with Fibromyalgia 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, and the next I'll struggle to reach 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 worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or 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, 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 every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.

If you read this and still want to suggest a cure, submit it in writing but don't expect me to rush out and try it. If it is something new, with merit, I'll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you - people who are not sick for many things but most importantly, I need you to understand me.


  1. OMG!! I could have written that myself...isn't it amazing other people's mindset? That if you just get up and get moving everything will be better. I thought having endometriosis was hard, then along came fibro....and I honestly don't know which is worse but I do know that my life will never be "normal" aka pain free ever again.

  2. Sara....You took the words right out of my mouth! I am with you girl. I have had FM for 27 years and yes...I have to get in having a life when ever I can. We are amazing that we survive inspite of who and what we have to deal with on a daily basis!!!!!

    Your new friend Olivia.

  3. I have seen this poem before and everytime I read it, I am amazed at the way it touches my heart. I am 33 and I am living with fibromyalgia, chronic fatigue syndrome, Epstein Barr syndrome, Arthritis and Lumbosacral Arthritis. So, everyday is a fight to survive basically! Bless all of you who battle chronic illness! We are all sisters ( and brothers) in this fight together.

  4. I understand your struggles, I too have fibromyalgia. Your letter to people who do not have or understand fibromyalgia is very beautiful. I know that may seems weird but it just is to me.

  5. all very well written. thanks for putting the pieces together in ways we all have trouble verbalizing.

    i just found you from Just Breathe, and i look forward to getting to know you better.

    {{gentle hugs}}

  6. Thanks so much for writing this. I identify with so much of it from the experience of suffering from a different illness. It's amazing what people don't understand because they've not experienced it--or the harm they do in their misplaced hopes, which are motivated by their own need to feel secure--not just about you--but about themselves.