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When No One Understands Your Chronic Pain

8/6/2020

5 Comments

 
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I’m always surprised when people ask me, are you still in pain? or are you in pain right now? Because, of course living with chronic pain is a 24/7 experience and I somehow expect them to remember that, but why would they?

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.
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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 pain, of course, but on some level we are also all in this together.
5 Comments
Christine OBrien
8/7/2020 12:05:47 pm

Wow. This made me cry because it’s how I feel. I’m sending this to my husband who told me two days ago that he has pain too. He has no medical conditions but common aging pain. I have RA and fibromyalgia and my inflammation levels are always high. It’s not the same at all. Thank you.

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Brian B. link
8/7/2020 02:12:56 pm

My 27 year career as a Firefighter and Paramedic has broken me. Not only do I live in chronic pain, but, my work comp insurance has denied me the definitive care I need. That's truly adding insult to injury!

Chronic pain is, in a sense, having an affair outside of your marriage. Because of pain, I don't give my wife or son the attention the deserve. It's not fair to them and the stress I feel is unbearable.

I keep praying for a miracle that somehow I will get the treatment which may give me back my quality of life. However, the longer I linger, the more relief is like a mirage.

Reply
Abby Hamilton
8/14/2020 05:39:20 pm

I'm really sorry that after all your service to the world you are suffering chronic pain, and not getting the help you deserve. Thank you for your analogy of the pain as "an affair" outside your marriage. One of the biggest deprivations I feel is the lack of energy for the good people in my life, including my husband.
A book that has helped me is "Freedom from Pain", by Peter Levine. Several different teachers have similar approaches to Levine's, so if you don't like his book check out others. It's not about a cure, but rather a mindfulness-based practice that can make a big difference.

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Brian B. link
8/14/2020 05:43:19 pm

Abby,

Thank you for your understanding and the book reference. I look forward to reading this. I pray for your healing and renewal of energy for your family. I truly understand you!

Brian

Kris W
8/8/2020 10:19:02 am

Thank you for this, Sarah. Your work always explains so perfectly what is difficult to express.

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