If You Could See My Pain
By Penney Cowan
Anyone who lives with chronic pain knows how difficult it can be to explain what it is like to live with pain, what it feels like, the control it has, and how much we want our lives back. The problem is, no one else can ever feel your pain. We wish they could understand that, while we might look good, what is going on inside and what they see on the outside are very different things.
People with pain struggle for validation, for a sense of dignity and respect. After all, to be treated with dignity and respect is one of our basic human rights. To find that validation, we struggle to communicate our pain to family, friends, and most importantly, to our health care providers. If only we could take our pain out of our body and hold it in our hand and say, ”See, look at how much pain I have.” But that is not possible. Yet, we seek the validation all the time.
Many years ago as I was seeking answers to what was causing my pain and how to regain control of my life, all I wanted to hear was confirmation that my pain had a source. But the more I heard they were not sure, or more tests were needed, or the best one, “you will just have to learn to live with it,” the more I doubted my own pain.
If only I had had the tools that the American Chronic Pain Association offers today it might have helped me better describe my pain. The ACPA pain maps are such a valuable tool. I thought for hours on end how to best describe my pain to my provider and the more I thought about my pain, the more it increased my suffering. I had no way of showing them where it was, how it felt, or the intensity of my pain. ACPA pain maps could have done that.
There is one more way to help you feel less alone and isolated because of your pain. That is to attend an ACPA group with other folks who share the same emotions because they, too, live with pain. If there is not one in your area, the ACPA can help you start one. Just knowing you are not alone means a lot. It did to me years ago when I entered a pain management program and found out there were other who live with pain! I was not alone!