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Blog Description:

Insights, wisdom, and practical tips for living better while living with chronic pain
Blog Added: January 23, 2016 09:40:55 AM
Audience Rating: General Audience
Blog Platform: Weebly Weebly
Blog Country: United-States   United-States
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Blog Rating: 2.73
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When No One Understands Your Pain

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...

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.

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 pin, of course, but on some level we are also all in this together.

I always like to hear from my readers. Feel free to comment and let me know how you're doing. And if you found this post helpful, please share freely. Thanks!

A version of this post originally appeared on ProHealth as: Helping Others Understand Your Pain

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Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company (integrating wheelchair and able-bodied dance).  She has been a columnist for Pain News Network and is a regular contributor to The Mighty.

The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chrnoic Pain   coming from New World Library June, 2018!




Help for Chronic Pain: The Outing

Pain is coming along for the ride anyway. What shifts when we decide to consciously choose to invite  pain out? Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company...

Pain is coming along for the ride anyway. What shifts when we decide to consciously choose to invite  pain out?
Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company (integrating wheelchair and able-bodied dance).  She has been a columnist for Pain News Network and is a regular contributor to The Mighty.

The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chrnoic Pain   coming from New World Library June, 2018!

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Don't Let Chronic Pain Define You

Who are you when you're living with chronic pain? A patient? A sufferer? A victim? A warrior?All of these things at different times, yet none of them tells your whole story.When pain moves in and takes over life, we become subject to its needs by default. Over time, it becomes harder and harder to find our private identity and the sense of our inner self as distinct from the experience of pain.In a sense, pain is shaping us into someone else.That's probably unavoidable, but I think it's...

Who are you when you're living with chronic pain? A patient? A sufferer? A victim? A warrior?

All of these things at different times, yet none of them tells your whole story.

When pain moves in and takes over life, we become subject to its needs by default. Over time, it becomes harder and harder to find our private identity and the sense of our inner self as distinct from the experience of pain.

In a sense, pain is shaping us into someone else.

That's probably unavoidable, but I think it's important to remember that we are not only a person in pain. Pain puts many demands on us and limits who we can be and how we can participate, yes. At the same time, we are still here, the self, the "I" that is immutable and core to our sense of self, is still here. 

Our lives include pain, but we are also greater than our pain. Our spirits, our sense of self, our connection to Life exist beyond the immediate physical realm of pain. They may feel distant and they may feel difficult to connect with, but they are still there, nonetheless.

Our lives also include the parts of us that are not experiencing pain.

Maybe we don't always feel stronger than our pain, and that's understandable. But if we let pain define us, if we begin to respond to life only as the labels we are given - in terms of our condition, our disability, the level of our pain -  then we are losing ground.

To not become completely defined by pain and loss and limitation, we use an act of will, an act of rebellion, sovereignty, and self-respect, to claim our own definitions of self. We necessarily include pain in our lives, but we also include the greater aspects of who we are - our dreams, our talents, our wisdom, our experiences from our whole lives, our contributions, our perspectives, our spirituality, our connection with nature, earth, the cosmos, the divine.

We live with pain, but we don't have to be defined by it. We are more than that. You are more than that. You always were, and you always will be.



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Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company (integrating wheelchair and able-bodied dance).  She has been a columnist for Pain News Network and is a regular contributor to The Mighty. Her book, The Pain Companion  will be released from New World Library, June, 2018. She is also author of  The Light at The Center of Pain, Living Better While Living With Pain, and 30 Days of Living Better While Living With Pain.



Pathways Through Pain: Imagining The End of Pain

Imagining the end of chronic pain. What will I do the minute this pain ends? How will I celebrate? What can I do today to bring that energy, those feelings, into my life right now? SUBSCRIBE Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She co-produced and directed Dancing From the Inside Out,...

Imagining the end of chronic pain. What will I do the minute this pain ends? How will I celebrate? What can I do today to bring that energy, those feelings, into my life right now?

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Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company (integrating wheelchair and able-bodied dance).  She has been a columnist for Pain News Network and is a regular contributor to The Mighty and ProHealth websites. Her book, The Pain Companion  will be released from New World Library, June, 2018. She is also author of  The Light at The Center of Pain, Living Better While Living With Pain, and 30 Days of Living Better While Living With Pain.



Being in Pain Is Not A Failure

So many of us living in chronic pain feel like we have failed. Failed at life. Failed at healing ourselves. Failed at being the perfect patient. Failed at getting through life without getting ill or becoming disabled. Failed at being perfectly happy and sound. We worry that we are failures. I have felt this way many times. It’s hard not to. So much of my time is spent trying to be different than I am right now. Trying not to be in pain. Trying to make myself better again....

So many of us living in chronic pain feel like we have failed. Failed at life. Failed at healing ourselves. Failed at being the perfect patient. Failed at getting through life without getting ill or becoming disabled. Failed at being perfectly happy and sound. We worry that we are failures.
 
I have felt this way many times. It’s hard not to. So much of my time is spent trying to be different than I am right now. Trying not to be in pain. Trying to make myself better again. Trying to be there for others in the ways they want me to be. Hiding my pain so people don’t feel bad for me and so that I don’t scare them with the hugeness of it.

It's No Crime

And we often feel we should be different. Being sick, injured, or disabled in any way begins to feel like a crime committed by us, particularly if we're relentlessly urged to get better. We want to be out of pain, but we’re not.  We want to show up differently in life, but we can't. We want a reset button on our bodies, on our emotions, on our lives.
 
And when we can’t find the reset button, we often blame ourselves for not trying hard enough. For having gotten into this pain in the first place. For having sidestepped from our normal lives onto this weird, unrelenting, difficult path of pain.
 
But I just want to say this today. For myself and for you. Being in pain is not a failure of any kind. It is not fun, it is not what we want and we may not understand how we got here, but it is not a failure.
 
There is no way to fail at life. I am alive, and you are alive, and we have a very interesting path before us that requires everything we’ve got to keep going. But that is not failure.

There Is No Perfect Life Out There

Look around you. How many people do you know who have never had pain in their lives? No one.  How many people are perfectly happy and perfectly at peace with themselves? Very few. Does this mean that everyone else is a failure? No, it does not.
 
I am not in perfect health. Maybe you aren’t either, but that does not erase the health we do have. That does not erase the life we are living and make it meaningless. We are given the task of finding new meaning–different kinds of meaning–in a life that is lived with pain as our companion, but that does not make it an unworthy journey or make us unworthy journeyers.
 
It is difficult, yes. It demands more of us and we have to find our inner reserves to carry on. But it is also unexpectedly deep and rich. It comes with its own rewards of wisdom, compassion, and self reflection.

We Are Not Failures, We Are Examples of Awesomeness

But having to do that, go through that, is not failure. That is awesomeness. That is power. That is unbelievable personal strength. That is belief in self and belief in life.
 
If you are in pain today, you have not failed. Your life is still yours. Your path is still yours. It includes the experience of pain, but it also includes all of you and all of your amazing, courageous spirit and your phenomenal will and dedication to life to wake up this morning and carry on.
 
We, in pain, are humans living our lives the best ways we can considering our tremendous challenges. And that makes us not failures, but quite remarkable people, I think.

Image Courtesy Pixabay

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Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company (integrating wheelchair and able-bodied dance).  She has been a columnist for Pain News Network and is a regular contributor to The Mighty. Her book, The Pain Companion  will be released from New World Library, June, 2018. She is also author of  The Light at The Center of Pain, Living Better While Living With Pain, and 30 Days of Living Better While Living With Pain.



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