It's difficult for others to even begin to imagine how pervasive the experience of chronic pain actually is. They just can't comprehend it. And I guess that's understandable because, in a way, those of us living with pain every day live in a different world–a world dominated by it and by our response to it.
With the best of intentions, others often compartmentalize our pain into a condition that we “have” (as if it were separate from us) or into an area of our body that is compromised. This might be useful sometimes for short-term conditions and short-term pain, but life in chronic pain, unfortunately, is not that straightforward.
If they wish to be of help, medical professionals, friends, coworkers and family need to know more about what we go through on a daily basis. Not to have a pity party, but to create a groundwork of understanding so that they can create better treatment plans, understand our limitations, and stop pushing for us to act normal.
They need to know that pain is not an isolated experience. It’s not neatly cordoned off into one area of our bodies. It affects our whole body, our mind, our emotions, and the way we feel about ourselves, life, and others.
Here’s a list of 15 ways to explain how pain affects you that may be useful in communicating your experience:
- I live inside a sphere of fog.
- It's like pain doesn't just stay in my body–I'm also sensitive to the space around me.
- I fatigue easily. Just being in pain is exhausting.
- Sometimes the simplest of tasks and activities wear me out.
- I sometimes feel like I have the flue and jet lag at the same time.
- My brain doesn't work well–sometimes I have blank spaces, and sometimes I just can't use my mind in a constructive way, as if it's offline.
- My short-term memory is sporadic.
- I have trouble focusing, in fact, trying to concentrate can make me feel worse..
- I'm always sleep deprived and often feel like a zombie.
- My pain travels and morphs–it's not always in the same place or of the same kind.
- I don't know how I'm going to feel on any given day.
- I have to find a way to live with hope while being repeatedly disappointed.
- Because of my pain, there is no certainty to my future, and that's scary.
- I feel like I have little or not control over my body or my life.
- I'm often on hyper alert and overwhelm easily.
For some of you this list may seem depressing, but in talking with many people in pain, I’ve found that it’s often something of a relief to recognize, articulate, and acknowledge all these aspects of pain. Many times people have said to me, “Other people experience that too? I thought it was just me.” And they breathe a sigh of relief.
My hope is that this article will help you more clearly express the extent of your experience of pain to those who need to know. I also hope that it will help you feel more validated and know that you are not alone. We all have our private experience of pin, of course, but on some level we are also all in this together.
I always like to hear from my readers. Feel free to comment and let me know how you're doing. And if you found this post helpful, please share freely. Thanks!
Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company (integrating wheelchair and able-bodied dance). She has been a columnist for Pain News Network and is a regular contributor to The Mighty and ProHealth websites. She is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain (New World Library June, 2018).