The #1 Reason your Healthy Friends Misunderstand your Chronic Pain

Hi friends, today’s article is another repost, originally posted on Life in Slow Motion back in 2014. Over the next few months, I plan to do reposts about once a month,  bringing back some of my favorite articles that were written when I had much fewer readers. I hope you enjoy them! 

Many communication barriers exist when it comes to describing chronic pain to family, friends, and other interested and uninterested parties. It has been said time and time again – something about chronic pain defies description. And if you are like me, you begin to dread those instances when you are faced with explaining your situation to healthy individuals who inevitably won’t truly understand.

In the midst of chronic pain, few things are more frustrating than taking precious time and energy to go into the details of your pain, only to be met with unsolicited advice, vaguely related stories, and various other responses that miss the mark of what you just so honestly and personally shared.

We all have stories of being hurt or misunderstood. Conversations seeking to explain our chronic pain so often go awry, bringing increased confusion instead of clarity.

Likely there are many reasons for this. At times there is an unwillingness to honestly share and a hesitancy to carefully listen. The subjective nature of pain is much better described through metaphor and art than everyday conversations. At times people are unempathetic, make unkind assumptions, or even completely disbelieve you.

Yes, these reasons are definitely culprits, but I do not believe any are the main culprit, the main reason, or the underlying thread that leads to the most confusion.

So often I look back on conversations with friends, and the misunderstanding doesn’t make sense. Many of my friends are exceedingly kind, and they truly want to understand. I am blessed to have friends who ask questions about how I feel, and really want to know the answer.  But, good intentions aren’t always enough, and on many occasions, the conversation ends with my realization that despite both of our best efforts, my kind and understanding friends are still largely unaware of what I am actually experiencing.

Why is this? When honest and careful conversations end in misunderstanding and confusion, what is the underlying issue that we need to address? A few recent conversations have brought to light what I believe to be the main reason for this misunderstanding. The number one reason our healthy friends fail to understand our pain is because as we speak our stories of chronic pain, our friends are listening and responding based on their past experiences and memories of acute pain. 

Besides a select few individuals born without the ability to experience pain, the general state of physical pain is a common experience that all humans share. As our friends listen to us, they think they get it because they have also experienced pain, and quite understandably, they draw on those memories to understand our pain. We all do this – when we are trying to understand someone else, it is common human behavior to seek to understand through the lens of our own life experience.

You can quickly see some glaringly obvious problems when the differences between chronic pain and acute pain are not known or recognized in these everyday conversations. And many problems surface when we rely on our own experiences to understand the experiences of another. So what are the specific problems? And how do we address them?

  1. The average person does not know the difference between “acute” and “chronic” pain; these words must somehow become embedded in our everyday vocabulary. 

To the average person, pain is pain. If we want to be understood, those who experience chronic pain must somehow convey the fact that chronic pain simply can’t be compared to the time-limited experience of acute pain. In the aftermath of acute pain, you slowly gain progress until you get better. Chronic pain persists with either an uncertainty of how long it will last or a certainty that it will never go away. The increasingly multiplying effects of pain over time cannot be overemphasized. Pain multiplied over time becomes an entity of its own kind, composed of many mental, emotional, spiritual, physical, and psychological consequences that combine into something much greater than the sum of its parts. We somehow must convey that our experiences of chronic pain are different than experiences of acute pain that seem deceptively similar.

We must learn to say, “Imagine pain that never goes away – that is chronic pain, and it is much different than acute pain which has an end. The story you referred to is much different than my story.”

  1. We too easily equate somewhat similar experiences; we must realize that our individual experiences are much different from each other than we realize. 

When someone shares a story, so often we have a somewhat similar story in mind that we are reminded of. We begin to think that human experiences are more similar than they actually are. Just like acute pain can’t be compared to chronic pain, no two chronic pain experiences are the same. Generalizing can be helpful because it lets us know we are not alone – we do feel similar things. But sometimes our responses to similar events are deceptively different. Assumptions are dangerous. Assumptions miss the person in front of us and make us think we understand when we really don’t.

We must learn to say, “I can see why you would think that experience was similar mine. But I actually don’t relate to it. I wouldn’t want you to think that I feel the same way, because I actually feel much different.”

  1. Pain memories quickly fade and we look back on past pain through the lenses of rose-colored glasses; we should focus on the person in front of us instead of our unreliable memories. 

On good pain days I look back at the bad pain days and they don’t seem as bad. Then the bad days come around and I am again reminded of the fiery intensity of what must be endured. Our mind and memories shield us, to some extent, from the intensity of our past suffering. If I can forget how bad my pain was last month, how much more so will a healthy person forget the surgery they had three years ago? It is just the way our minds work, and because of this, we must constantly be focused on the person, experience, and story being told instead of on what we remember. 

We must learn to say, “When you said that, I felt like you minimized my pain. Pain is easily forgotten over time, and my experience is likely more difficult than you are imagining.” 

  1. We misunderstand how to accurately “put ourselves in another’s shoes”; we must redefine and re-understand how to be empathetic and truly understand another person. 

Empathy has been defined as putting yourself in another person’s shoes. But, we must be careful how we envision this metaphor. If we imagine this metaphor as placing our own body in the other person’s experience we will miss the mark. We can experience the same thing, with vastly different results depending on personality, physical strengths and weaknesses, genetics, family background, and many other factors. Putting ourselves in another’s shoes means we actually see through that person’s eyes. We don’t wonder what that particular experience would be like for us. We seek to understand what that experience is like for the person in front of us.

We must learn to say, “I think you are missing what I am trying to say. Let me try to explain again.”

What barriers do you experience when trying to explain your pain to others? Have you given up explaining, or do you keep trying? What has worked well for you in helping others understand?

 

8 responses

  1. Thanks Esther, I like your idea of reposting. Great post as always. As for me I’ll keep explaining to a certain degree but I’ve come to realize much quicker now who has the potential to slowly fine tune their understanding and who won’t. I do believe now with a few years of severe chronic pain, fatigue and sensitivities under my belt that people just can’t get it in a limited amount of time. My own wonderful and sensitive who has been disabled since he was 2 years old husband himself is still learning along with me.
    So now I focus my energy on those who are willing to come back and listen to more and slowly try to understand. The rest I have to let go.

    • Good to hear from you Claudia 🙂 I agree, I also focus my energy on those who are willing to listen and understand.

  2. I love this post Esther and have just shared it with my FB forum “Medical Musings with Friends”. Thank you for your beautiful insight.xx

  3. Any advice for dealing with those well meaning folk in your church that, no matter how you explain it, don’t get it and they continually flood you with scripture so you can fix your attitude? My family’s life threatening food allergies and my scent allergies are not understood either (we’ve basically resigned ourselves , especially me, on getting sick every time we step in the church building – we are the pastor’s family). All the advice comes from a heart of love; I realize that but it’s really bothering me that I can’t measure up and it’s their duty to point out all the ways… I also do have a couple of wonderful friends who are very suppprtive but I can’t seem to just ignore the others. And yes, I leave most every single service or program dealing with an allergic reaction at the bare minimum. I’m tired.

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