An Open Letter About Chronic Pain

Because of the varying nature of chronic pain and the feelings that accompany it, describing it is often challenging. For some people, sharing their personal feelings about their chronic pain is difficult. To make it easier, one option is to write an open letter, save it and share it with others when appropriate.

The following letter is adapted from an original letter written by Ricky Buchanan; it is posted on her website Not Done Living to help people with chronic pain best explain their situation.

Open letter from a person with chronic pain

Most people do not understand what chronic pain entails and how it affects daily life. Chronic pain is complicated. The purpose of this letter is to communicate how chronic pain makes individuals feel. It is difficult to understand unless someone has experienced it.

• Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes or an hour. Even though I was able to stand (sit, walk, concentrate, think, be sociable, etc.) for 10 minutes yesterday, that doesn’t mean that I will be able to stand for 10 minutes today. I was very happy about my progress yesterday; unfortunately, that doesn’t mean I can do the same thing today. It’s tough because my pain can act like a yo-yo, which confuses even me. I never know how I’m going to feel each day, and the way that I feel when I wake up can be much different from the way that I feel midday. Basically, I may feel okay one minute and terrible the next. This is the reality of living with chronic pain.
• Please understand that being sick doesn't mean I'm not still a human being. I know that you want the best for me, but please recognize that “getting out and being active” does not necessarily make me feel better. Sometimes, it actually makes me feel worse. Of course, I would love to do certain activities that I once enjoyed, but telling me that I need to “get my mind off it” by doing these activities is very frustrating when I don’t feel well enough to do so. If I was able to do these things, I would. I appreciate you working with me so that I can achieve my goals; hopefully, someday, I will be able to participate in more activities again.
• Please understand the difference between "happy" and "healthy.” When you talk to me and I sound happy, it most likely means that I am happy! Unfortunately, this doesn’t necessarily reflect my level of pain. Please don’t say, “you sound much better!” because chances are that I’m simply coping.Please understand that I may seem sensitive or “touchy” sometimes. Please don’t take it personally. I struggle to act “normal.” Chronic pain is difficult to understand unless you have experienced it. It affects both the body and the mind. I am exhausted and often exasperated. Please bear with me and accept me as I am. I am doing my best.
• Thank you for visiting me when I don’t feel up to going out. Thank you for helping me with the shopping and household chores. Thank you for taking me to the doctor. All you do for me does not go unnoticed.

You can find the original letter in its entirety at: http://notdoneliving.net/openletter/index.html