I found this letter on a web site when I first started researching FMS. When I tried to find the web site again to get permission to use it, I was unable to locate it. I hope that I am not offending anyone. This is by far the best explanation of our problem that I have seen.

To Friends and Family

I look normal. Don’t let my outward appearance fool you: I am in pain. I am not the same person I was a year ago, or two years ago, or 4, depending on when it was you last saw me. I look healthy; I am not.

My condition changes from day to day, sometimes even hour to hour. Today I might be able to walk with you a few miles; tomorrow I may not even be able to get up off the couch. A week ago I felt almost human; next week I may feel like something less than what the cat drags in. I may want to do all the same things I used to: to work out, take long walks, socialize, keep some semblance of household order, but I may not be capable of it.

If I say, "maybe later", please understand and accept this for what it is, which is not an excuse. It is a reason. I don’t enjoy my new limitations; I hate it. I might even be physically able to do today what you wish for me to do, but if I know without a shadow of a double that pleasing you will mean for me later an incredible amount of pain, I must say no. I’m not lazy. I just hurt.

I absolutely do not want pity. This is no reason to feel sorry for me—life is not perfect, and life happens to us all. This is the hand I have been dealt, and I intend to play it out. I don’t blame the world for what I suffer; I don’t rally against God. This is no one’s fault. Not even my own.

I do not crave attention. I didn’t decide one day that I was tired of living like a normal person, and that the means to a life of never having to work, having my whims catered to, having friends and family treat me special involved creating symptoms no one could see under a microscope. I loved my life the way it was; I was never depressed and I had plans. This isn’t a cry for your attention. It just IS.

I don’t feel sorry for myself. Why should I? Things don’t always work out the way you’d like them to—this is one of those times. I can live with who I am now. I may not enjoy each day as much as I used to, but I still live for each day, and embrace whatever I can get out of life. Pain is my companion…but pain is not me.

The truly hard part- - if you cannot accept me for who I am now, I am sorry for you. I won’t waste precious energy chasing after you to cling to a friendship that probably wasn’t as strong as I had once believed it to be. I cannot force myself to readopt who I was before and reassume the same roles. In this- -preserving myself and my state of mind- -I have to be selfish. If you cannot accept that I might not be able to contact you every day as I did before, or engage in the activities we once did, whether it was training together, working out together, or just going bowling, then do me a favor and let’s quietly part ways with no ill feelings. My life is going new directions, and for me that might not be a bad thing. If the changes I have gone through disturb you, hold your criticism. I don’t need it. I don’t want it.

Life deals us a bad hand occasionally. This is my turn. It happens, I accept it. I hope that you can too.