Open Letter about Fibromyalgia
As I became active on a Dutch forum about FM, I found this letter and had the feeling that I should share this with you. Just to get you a better picture of what I feel. Do not worry I have translated the letter from Dutch to English so do not hang me up on small spellingmistakes.
And as we all know that life is brutal, but still there is no reason to let your head hang down.
This how I look at real friends: a friend is someone who dances with you in the sunlight and walks beside you in the shadow as that is all what live is about.
Open letter to people who do not have Fibromyalgia:
If you have Fibromyalgia, it means many things change and that many of these things are invisible.
It is not visible as a paraplegic.
Most people do not understand even a small bit of what it is to have FM and living with the effects it has on your life.
People who think that they understand what you have are normally poorly informed.
To be informed, and who can understand? .......
There are certain things from me I want you to understand before you condemn me ...
Please understand that being sick does not mean that I am no man or woman anymore.
Most of the day I spend in a lot of pain and exhaustion, and if you visit often, I am not very pleasant company, but I am still in this body.
I am still winding myself up about work and my family and friends, and usually I love that you also talk about the things that are concerning you.
Please understand the difference between "happy" and "healthy".
If you have flu you probably feel miserable, but I have been sick for many years.
I can not always feel miserable, in fact I work hard, not to be miserable.
So when you talk to me and I sound happy, it means that I'm happy.
That is all.
It does not mean that I have no pain or being terribly tired, or that I am getting better, or whatever.
Please do not say: "Oh, you already sound better!".
I do not sound better, I sound cheerful.
If you want to say something about it, you can.
Understand well that being able to stand for 10 minutes does not mean that I can also stand for 20 minutes, or an hour.
And since I could stand 30 minutes yesterday does not mean that I can do the same today.
With many diseases you are either paralyzed, or you can move.
This disease is more complicated.
Everything described above also applies to "sit", "walk", "believe", "thinking of others" and so on ...
It applies to everything.
That is what Fibromyalgia does.
Please understand that Fibromyalgia is variable.
It is possible (for me that is normal) that one day I can walk large pieces and back while I have trouble the other day just to reach the kitchen.
Do not attack me with: "But yesterday you did!" if you want me to do something, ask if I can.
In a similar situation, maybe at the last moment I will cancel an appointment, if that happens do not to take it personally.
Please understand me that “going out and doing things” not make me feel better and I often feel a lot worse.
If you tell me that I should move a lot or that I should lose weight (or even gain), or I should buy a training device, even to go to gym or something like that ... then I will do that.
I am emotionally hurt (and I need to cry sometimes) and that is not good ... all these things I would do if I could, I would like to do and you know it?
I work for myself with my doctor and physiotherapist, and I do all the exercises I should do in my situation.
Another decision that I really acts is: "You have only yourself but harder to tackle ..."
It is clear that I work for myself with my doctor and physiotherapist, and I do all the exercises I should do in my situation.
Another judgement that I really hate is: "You have to be a bit harder on yourself..."
It is clear that Fibromyalgia has to deal directly with the muscles and because my muscles are not developping the same way as yours , I distroy more than I do good when I follow your advice and it will cost me days or weeks to return where I was and to recover from even a single activity.
Please understand that if I say I need to have a seat.
Too lie down or need pillows, and that I need it now - it can not be postponed because there is no time for it, or that I am not at home. (or for any other reason).
Fibromyalgia does not care about that.
If you have a good idea for me, than keep it for yourself.
It is not something that I do not appreciate, and it is not because I do not want to be better.
It is all because everyone has a good idea for me.
In the beginning I did everything that I was advised and gave it a try, but I realized I was consuming so much energy to try things that I made myself only more ill, and not better.
If there would be anything that all Fibromyalgia patients could help or could cure them, then all persons with Fibromyalgia would have known.
There is a global network (Internet and others) between people with Fibromyalgia, if there would be something that might cure us, we would know.
If you have read everything and you want to give me a good suggestion, please do so, but do not expect me that I immediately go after it and give it a try straight away.
I will then consider it and discuss with my doctor. In many different ways I depend you - people who are not sick - I need you to visit me when I'm sick or when I can not go out myself... Sometimes I need your help when I need to do some shopping, cooking or housekeeping.
I'll probably might even need your help to drive me to the doctor or physiotherapist I need you also in a different way ..... you are my link to the outside world ... if you will not visit me then I'll maybe not see you that often. ... and, as much as possible, I need it that you will try to understand me.
The Old Sailor,