Pro Health blog post, by Sarah Anne Shockley, 14 April 2018: Helping others understand your pain

I’m always surprised when people ask me, are you still in pain? or are you in pain right now? But, of course, how could they know?

It can be difficult for them to even begin to imagine how pervasive the experience of chronic pain actually is or to comprehend the experience. That’s understandable. In a way, those of us living with chronic pain live in a different world, a world dominated by pain and our response to it.

With the best of intentions, our doctors, friends, and caretakers often compartmentalize our pain into a condition that we “have” (as if it were separate from our experience) or into an area of our body that is compromised. This might be useful sometimes for short-term conditions and 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 when we say no, 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 us that may be useful in communicating your experience to others:

• I live inside a sphere of fog.
• It’s like pain doesn’t stay in my body––I’m also sensitive to the space around me.
  I fatigue easily. Sometimes the simplest of tasks and activities wear me out.
• Being in pain is exhausting.
• I sometimes feel like I have the flu 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 is 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 can be scary.
• I feel like I have little or no 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 have these “side effects” of chronic pain recognized, acknowledged and understood. Many times people have said to me, “Oh 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 articulate 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 pain, of course, but on some level we are all in this together.

A native of Connecticut, Sarah Anne Shockley is a multiple award winning producer and director of educational films, including Dancing From the Inside Out, a highly acclaimed documentary on disabled dance. She holds an MBA in International Marketing and has worked in high-tech management, as a corporate trainer, and teaching undergraduate and graduate business administration. As the result of a work related injury in the Fall of 2007, Sarah contracted Thoracic Outlet Syndrome (TOS) and has lived with debilitating nerve pain since then. She has been a columnist for Pain News Network, is a regular contributor to The Mighty. She is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain and other books on living with pain, and currently resides in the San Francisco Bay Area