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Just Listen & Hear Me

© Cynthia Webber (Jausten)

It is difficult to continue to give love and understanding to those who don't acknowledge our hidden disability. With friends or acquaintances it is easy to just end the relationship when it has died. However, a family is different. The bonds are deeper, and thus the guilt and resentment can creep in when they think they know what is the best for us.

I recently received a letter from my mother which I had to read and reread to understand what she was trying to say. I had shared with her on the phone my feelings of not being understood by my immediate family. My mother also does not understand my fibromyalgia. She thinks that she can because she recently had a stroke and has to deal with loss, pain, and depression. But she doesn't understand me, and what I deal with each day of my life. She thought it was awful that I was on permanent disability at my age. She views me through her own eyes and not through mine.

Her letter was basically trying to tell me to give my love, care, and attention to my family, and that included her and my dad. She wrote that she didn't think I had ever seen my total self. Her words were, "You are fun, vital, dynamic, entertaining, and a joy. When you leave a room, much of its vitality and joy goes out." I may be all these things in her eyes, and even in the eyes of others, but I now do not have the energy to give as much of myself to those who want my time and attention.

I was not placed on this earth to keep others happy, or to entertain them. If I had wanted to entertain people, I would have become an actress. My writing has become an outlet for me, yet it is not viewed as an acceptable outlet by my family. I can no longer run, get up each morning and go to a job, or even do all the household chores that I once did with great ease. Yet, because I look "normal," the expectations of others remains the same. If I had become an actress, I would no longer be able to entertain people, and yet, I would probably be allowed by others to write.

The losses that those of us with fibromyalgia have had to deal with can never be understood by those who continue to see us as we used to be. A hidden disability is very hard to understand for some people, and I've tried to explain fibromyalgia in many different ways in order to get people to understand. If someone sees me on a good day, they believe that I'm cured, or that it was all in my head. However, if they see me on a bad day, they sometimes will try to get me to do things which they believe will help me. Thus, they don't know me, nor do they understand the nature of fibromyalgia.

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