“What would you do if I sang out of tune, would you stand up and walk out on me?” If you have fibromyalgia or some other chronic pain illness you have probably worried about people walking out on you and can relate to the question. The reason why is that anyone with a disabling chronic pain or fatigue illness feels like they are singing out of tune in the story of their life. Doing so also creates a fear of loss, especially losing your friends or family.

The following is a letter you might relate to if you’ve had a chronic pain related illness for any length of time. If nothing else it may be something, you can relate to or something that might be validating to your feelings over the years of invisible pain.  Feel free to use this note if it becomes necessary in your life to express the despair of having a chronic pain or fatigue illness and need to express yourself to those inclined to walk out on you who may not understand being out of tune.

Singing out of tune is beyond my control when fibromyalgia presses the pause button in my life. The problem is that I have no control of when the pause button is pressed. I know it’s inconvenient to you because it is inconvenient to me. I don’t like the personal disappointment any more than you like being disappointed. I disappoint myself far more than I disappoint you. I live a life of letting myself down.

There are times when I may have made plans only to feel a flare up of fatigue, pain or other related symptoms causing me to cancel those plans. Those flare ups can be so devastating that my body won’t respond to anything or anyone’s selfish encouragement. All I can do is sing out of tune and hope for understanding, understanding that many times is hard to come by.

It’s hard to feel like I have always got to explain why I can’t make plans or keep the plans that have been made. This is especially true when I know that you are suspicious of me and my motives. Often I know that you don’t have a spirit of understanding and yet I try to please you, to go along with you, even when my pause button is being pressed over and over again.

Frequently things get to the point where I decide to withdraw rather than face the music of disappointing you or other friends or family. I can’t make you accept it, I can’t make you change your mind, only you can do that and I hope you will. In the meantime, I need to do my best to take care of myself. I’m the only one who really knows what I need and how to take care of me the way my circumstances require. Sometimes that means I need to reduce the stress in my life which means withdrawing from your life.

I have tried to explain more than once and so the question comes up how much do I really need to keep explaining when you fail to understand me? There comes a time when enough is enough.

I guess I can’t fault you from not grasping it. I still don’t believe all this is happening to me and yet I suffer every day. It’s been going on for years with no hope or no end in sight. Yes the pain and fatigue is real and yes, it is a constant every day of my life and even though it seems unbelievable, it’s real. They call this an invisible illness, but it doesn’t feel invisible to me. I see why you might not get the picture, but I still need to be understood. If you can’t or won’t accept what I’m saying, then maybe I don’t need the baggage of your unbelief and lack of acceptance in my life. Stress is a major contributor to pain and fatigue and I need to do all I can to minimize stress in my life.

A true friend would understand even if is seemed impossible to understand. Do I have a history of lying to you? No, I don’t. So why won’t you believe me? A true friend would. Family members and relatives are an act of birth, being friends is a matter of choice. I can’t stop being your family, but that doesn’t mean we have to be friends. If you choose to leave me behind or choose not to believe me then what is the point of straining over an unfulfilling relationship? You don’t even need to help me, all I want is to be understood and believed. Now you know why I sing out of tune, I just hope you won’t stand up and walk out on me.