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04/19/2010 12:28 PM

Open Letter to All Who Don't Have Fibromyal

tracyseire
tracyseire  
Posts: 50
Member

Fibromyalgia Support Groups by Aimee(from FaceBook).... "This was given to me by a friend,[Catherine] also with FMS. She found this anonymous letter on a blog. I think it is very-well written and perhaps it could help you in assisting others to help understand what we go through." This letter was submitted to Aimee by Catherine..(Maybe she's in this support group??)

Having FMS means everything has changed, and a lot of these changes are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects. Of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understsand, 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 in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with. But I'm still me stuck inside this body. I still worry about my work, my family and friends. 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. It doesn't mean that I'm not in a lot of pain or extrememly tired or that I'm getting better or any of those things. 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 10 minutes doesn't necessarily mean that I can stand up for 20 minutes or an hour. And, just because I managed to stand up for 30 minutes yesterday doesn't mean that I can do the same today. 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 the act of standing with sitting, walking, thinking, being sociable and so on. It applies to everything. That's what FMS does to you.

Please understand FMS is variable. It's quite possible 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, then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please do not take it personally.

Please understand that 'getting out and doing things' does not make me feel better and can often make me seriously worse. Telling me that I need a treadmill or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears and is not correct. If I was capable of doing these things, don't you know that I would? I am working with my doctor and chiropractor and am already doing the exercise and diet that I am supposed to do. Another statement that hurts is, 'you just need to push yourself more, exercise harder...' Obvioulsy FMS deals directly with muscles and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days, weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end?) However, FMS is not caused by depression.

Please understand that if I say I have to sit down/lie down/ take these pills now, that I have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever.) FMS does not forgive.

If you want to suggest a cure for me, 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 at one point or another. At first I tried them all but then 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 FMS, then we would know about it. This is not a drug-company conspiracy. There is worldwide networking (both on and off the Internet) between people with FMS. If something worked, we would KNOW.

If after reading this, you still want to suggest a cure, then do it. But don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways, I depend on you - people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need your help with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too. You're my link to the outside world... if you don't come to visit me then I might not get to see you... and, as much as it's possible, I need you to understand me.

August 29, 2009

Post edited by: tracyseire, at: 04/19/2010 12:36 PM

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04/19/2010 12:34 PM
Ragna
Ragna  
Posts: 369
Member

What a great blog! Somes things up pretty well I'd say.

04/19/2010 01:16 PM
Natalia5150
Natalia5150  
Posts: 3632
VIP Member

Tracy!!! You living doll you!!!

What a grand letter that says it all...

How I wish I could thank the lady/gentleman who wrote it....

I am copying it and saving it to send to EVERYONE!!!!!

I bumped into a lady frm Bible study which I used to go to 4 years ago... and she thoughtlessly said, "Oh I thought you died."

Maybe I'll send one to her too.

Thank you, love, you have helped so many of us here put words to the condition that sometimes takes up our mornings noons and evenings, just trying to 'feel better'

grateful hugs

Natalia


04/19/2010 01:57 PM
raynedae
raynedae  
Posts: 8219
VIP Member

Hi Tracy, thank you for sharing that! It is wonderfully well written and very explanatory. I'm going to bookmark this thread to suggest when members ask about what to tell family, friends etc. It's just as well-written as the "spoon theory".

04/19/2010 02:38 PM
MissStacey
MissStacey  
Posts: 14845
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I'm an Advocate

That's a good one, it's similiar to one of the ones I have in a link I give out with letters for family and friends but it's not the same one. Maybe I will copy it to that thread for the newbies so they can have even more to see. Thanks for sharing! Wink

04/19/2010 02:40 PM
MissStacey
MissStacey  
Posts: 14845
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I'm an Advocate

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