How to Have Conversations about Chronic Pain

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Welcome to the third post in the Explain Your Pain series.

Post 1 – The Communication Dilemma

Post 2 – Is Explaining Our Pain Even Worth It? 

Today I want to discuss some practical guidelines about how to have conversations about our chronic pain before I start addressing specific topics. This post will be the foundation for all future posts. In all honesty, the guidelines in this post are straightforward and simple. They are guidelines that we all know, but in my experience, rarely actually follow when we are explaining our pain.

  1. Speak the Truth in Love

When it comes to chronic pain, we often take one of two approaches. We either speak only a portion of the truth, believing it more loving to shelter those around us from the reality of our pain. Or, we speak the truth in bitterness and anger, upset that people are not catching on quickly enough.

Neither of these options work. When we speak about our pain, it should be the honest and direct truth, refusing to hide or apologize about the reality of our pain. But the truth of our pain should be spoken in a way that is loving to both ourselves and those we speak to, refusing to fall into bitterness and anger.

  1. Be Patient and Willing to Explain Multiple Times 

Explaining our pain must be thought of as a continuous conversation, not a simple, one-time explanation.

We become frustrated too quickly. While we so often desire empathy from our healthy family and friends, often we are hesitant to offer the same empathy in return when we become upset at those we love for not immediately understanding.

Our mindset needs to change. One conversation will barely scratch the surface of the entirety of our chronic pain because the effects of chronic pain on our lives are so pervasive, complex, and all-encompassing. These conversations will become much less frustrating if we assume from the beginning that we will have to explain the same thing more than once. 

  1. Be Proactive in Planning and Scheduling Important Conversations Ahead of Time

The timing and setting of our conversations regarding chronic pain can be difference between making and breaking understanding. For more important conversations and updates on our chronic pain, we must not be scared to plan and schedule these conversations for a time when both parties can be fully invested in speaking and understanding.

This is especially helpful for explaining initial diagnoses, giving updates after doctor’s appointments, and making our loved ones aware when we enter setbacks, flares, and bad pain days.

  1. Move Forward with Realistic Expectations & Right Motivation 

We must have realistic expectations. If we move forward with realistic expectations, we will be much more likely to succeed. We must remember that our goal is not for people to understand 100% of what we are going through. This would be impossible. No person can know an experience they have never had completely. The goal is for those around us to understand to the extent that you be known and supported, that you can receive practical help, and that your relationship can flourish. 

  1. Be Careful to Never Make Assumptions 

Probably the most important thing we must keep in mind is to never make assumptions about what people know about our pain. Many of the concepts talked about in this series are obvious to us, but they are not obvious to your family and friends. Over time, we have experienced chronic pain for so long that we become desensitized to what is and what is not common knowledge.

We surround ourselves with other chronically ill and pained individuals who really “get” us because they are going through the same things. And then we wonder why our family and friends are so slow on the up take.

We also have to be gracious in remembering over and over again that what we are experiencing cannot be seen. Our loved ones cannot see when we have a setback, flare, or bad pain day. Our loved ones cannot tell when we begin to make microscopic progress that feels huge to us but looks no different than where we were last month. Because it can’t be seen, we have to say something.

8 Comments

  1. Hey you, I love your posts. of course I always have hankies ready!
    I have to say though, you can talk about it, tell your partner, all you like, but believe me, once you’ve moved in together and you find that he didn’t hear any of it!!!!!!! Yes believe me it happens, (I would never have believed it true that someone could be horrid ) that’s where I am now living with a guy that treats me like I’m a child, accuses me of being a liar and a user, along with many other things, on the same lines.
    What do you do when you are accused of being something you are totally the opposite to?
    So you can talk all you like BUT PLEASE be prepared to be treated the opposite to how you are used to being treated.
    PLEASE BE CAREFUL, EVEN IF YOU HAVE TALKED ABOUT IT DON’T FOR ONE MINUTE THINK WHOMEVER YOU ARE TALKING WITH HAS BOTHERED TO HEARD YOU.
    Oh but happy to tell me “we all know about your pain, don’t need to hear anymore’, I’ve never known anyone so cruel. Now I daren’t do anything for fear, he’ll be able to use anything. to throw at me.
    All the time we courted I was totally honest all about me- everything- YES warts and all, none of it he says he heard. I’ve never met anyone so opposite to everyone else.
    I’m sorry to drop this in but I would hate anyone to be in my position.

    1. Jane, thanks for sharing this. It is so true that from just saying these things people do not necessarily get an accurate perspective, and actually living with us and seeing it is so different. I really appreciate the caution that you give to people, and I am so sorry that the people around you invalidate your pain. I am thankful for you and sorry for your suffering! You don’t need to say sorry for bringing your perspective and opinion in – I really appreciate it!

  2. Not assuming is hardest for me. Not assuming the worst is my biggest struggle. I always think that people are judging me, not believing me, or things like that. Usually, they’re just confused because I haven’t been able to articulate how I’m feeling.

    This post series has been really helpful to me so far. I can’t wait to read the next parts of the series.

    1. Thanks Brittany, I agree – assuming is the hardest for me as well. The longer I deal with chronic pain, the more I forget how things that are obvious to me are not obvious to other people. And I immediately assume that people are judging me as well. I think that sometimes all of the stories online of people who say horrible things about illness/disability make me skeptical of EVERYONE. I know these stories are true, and have met some nasty people myself, but not everyone is like that. Thanks for reading! I’m really enjoying writing this series!

  3. These are all great points, but the last one is a big one. When I discussed my illness with my best friend, I didn’t know she understood some of the pain. She has been living with an autoimmune disease for years, but never told me. She didn’t even tell me when I told her about my ilness. When she did tell me this past Spring, I felt bad about how I explained my pain assuming she didn’t understand. A lot times others are embarrassed or intimidated by their illness, so they don’t discuss it with others.

    thank you for sharing your post at #ChronicFridayLinkup! I pinned your post to the Chronic Friday Linkup Board at http://www.Pinterest.com/beingfibromom

    1. I couldn’t agree more that the last point is the most important one. I love your take on it, because I was focused much more on not assuming that people know things about our pain that seem obvious to us. But you are so right, that sometimes people know way more than we give them credit for! I sometimes forget how many of “us” there are because we are often so hidden in real life. Great reminder!

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