The #1 Reason your Healthy Friends Misunderstand your Chronic Pain

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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 are never enough, and every single time, 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 by time becomes an entity of its own kind, composed of many mental, emotional, spiritual, physical, and psychological consequences that combine into a monster 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?

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25 responses

  1. Some wise words.
    Although I’ve not entirely given up trying to explain my situation to others, I do try to avoid it. My tolerance for people in general is limited lately.
    I’ve found great solace in speaking with other chronic pain sufferers. While our stories are all vastly different it seems to me we can relate to another fellow sufferers in a unique way.
    For example with you and I. I definitely feel like you ‘get’ what I’m going through on a level that most of my close friends do not, even though I hardly know you.

    • I am similar – I have not given up explaining, but I don’t go out of my way in most cases.

      And i completely agree! I think there is an instant understanding that happens between individuals who suffer chronic pain and illness. Our stories may be different, but there is an underlying thread that we all just get. It is a wonderful thing!

  2. I have pretty much given up. I feel like when people ask how you are, they don’t really want to know. I don’t want to receive unwanted advice, so I just give a “good” when I’m asked. Even with the few people I do feel comfortable telling the truth to, they still don’t get it.

    • That is hard 🙁 I think my focus of this post is on the people we still feel comfortable talking to – and I agree, only the people who have seen me and lived with me through my pain and illness (family for the most part) have a level of ‘getting” it. I still keep trying with close friends through, because it is such a huge part of my life. It is hard for me to have a deeper relationship with someone if they have no understanding of this huge part of my life. I keep trying knowing they won’t fully understand, but perhaps they will get closer to understanding. And in the same way, I assume there are aspects of my friend’s lives that I won’t fully “get,” but I will keep trying too.

  3. Good Thoughts. I wouldn’t say I suffer from chronic pain, but more chronic uncomfortableness. Still, I normally err on the side of not telling people what I’m going through, because I know they will understand poorly and then they will tell me a story about when they stubbed their toe. Ok, that is an exaggeration, but sometimes it feels like that.

    The art of listening well is valuable, and extremely valuable for friends of people who suffer from chronic pain.

    • Haha, I’m laughing at your stubbed toe example, because it is so true 🙂 I also err on the side of not telling people, except close friends. With acquaintances, I just assume they would not want to take the time to listen to a full explanation, and that is ok. It doesn’t make sense to tell the deepest most personal details of your life to everyone anyways.

      But to truly have good and deep friendships, how can I leave out something affects literally every part of my life? It feels impossible to have a real friendship without some level of understanding.

  4. I minimise the explanation. It doesn’t matter what you say to explain your illness, only others with chronic illnesses can tap into what you are saying when you use the word chronic. Chronic is beyond the pain and beyond the fatigue, it is a way of being that is in your life without bounds.

    • I love your description that it is a “way of being” – so true.

      I also minimize explanations for the most part, unless it is someone close to me. And yes, the word “chronic” holds little meaning to most people. So, yes that is the way it typically is, but is resolving ourselves to that the best way? Personally, I want it to be different. Although I respond much the same way as you, I am not convinced that is the best way. Perhaps it can be different if we are wise about how we speak and explain , knowing a real understanding will never be met, but also believing people can come closer to knowing us as we really are.

  5. Thank you for sharing this. It’s very difficult relating to others and explaining pain, even to doctors who see it every day. You are so right on about the difference between acute and chronic pain: that feeling that the future holds pain, it won’t be ending like acute pain which no matter how horrible it may be, there is an understanding that it will get better. That hope makes all the difference.
    Thank you for the encouragement to talk to our friends about it further. Great writing! 🙂

  6. My journey with chronic pain is new and I have been forced to deal with the harsh realities of people not understanding. I have had vulvodynia for a year now, and it has been extremely hard to deal with because I miss my old body. Anyways, people can be extremely hurtful when they do not understand where you are coming from. You are right, people who do not suffer from chronic pain cannot fully understand because how can you really imagine it? However, when people to tell you to just “get over it” or that “you’re making it up”, it is challenging to me mindful that they can’t truly understand. Yet, through chronic pain, I have become to see life differently and my interactions with people have also changed.

    As depressing as chronic pain can be, I am thankful for outlets such as blogging where we can come together and share our experiences so it doesn’t feel like we’re as alone as we think. Thank you for sharing your insights, these are definitely useful tools for people who suffer from chronic pain.

    • Wow this is so hard. I was just reading your story and it sounds incredibly difficult and unbelievably life changing. So hard when others do not understand, but the community you find online does get it. Thank you for stopping by and for reading.

    • It means so much to me, and many others with chronic pain, that you would take the time to read and understand. Most who read my blog struggle with chronic pain or illness, and you are definitely in the minority to read even though this is not your particular struggle. It really means the world! Thank you!

      • Well, I do have some arthritis pain, but it is manageable. Perhaps by having some pain I can relate a little to your pain. Or maybe God is preparing me for the future, or maybe He wants me to pray for you. Whatever the reason, I am somewhat interested. And I also just like to read heartfelt writing.

  7. Thank you for this! I will have to use some of your responses 🙂 They are very tactful and yet to the point, which I really like! I seem to give the “okay” response to most people just because I don’t want to get into it. With close family, I try and be honest. There are days I want to talk about it my pain more than others.

    • Yeah, it can be exhausting to get into things. I really tend to decide on a case by case basis, depending on how much of a relationship I have with someone. If it is someone I want to stay close to, it is usually worth the effort so that our effort can stay intact and there isn’t too much misunderstanding.

      But, I can certainly relate with feeling differently on different days!

  8. My beloved sister, as usual one morning she called me moments after I took my pain med for my CP. She said, You always talk about your pain. I only want to talk to you when you are good.
    I said, You always call me after I just woke up.
    That, really cut to the bone, and our sister friendship has never been the same since. She stopped calling daily, and she told me don’t answer if I am in pain. Can you imagne the number of times I’ve not answered her, very few, calls?
    Sadly, our friendship has ended entirely.

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