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Google Pagerank: 3
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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Total Visits: 837
Blog Rating: 2.73
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The Separate World of People in Chronic Pain

This article appeared in its original form in this blog as "Life on Planet Pain" (2/4/16) and in The Mighty as"The Separate 'Planet' We Live on As People in Chronic Pain" (6/9/18) Living with chronic pain is like living on another planet with a completely different atmosphere.Other pains can usually be pointed to or clearly described. They are polite enough to stay within certain physical or emotional confines, and have a reasonable shelf life.Chronic pain, on the other hand simply...

This article appeared in its original form in this blog as "Life on Planet Pain" (2/4/16) and in The Mighty as
"The Separate 'Planet' We Live on As People in Chronic Pain" (6/9/18)

Living with chronic pain is like living on another planet with a completely different atmosphere.

Other pains can usually be pointed to or clearly described. They are polite enough to stay within certain physical or emotional confines, and have a reasonable shelf life.

Chronic pain, on the other hand simply refuses to leave, and often roams around the body wherever it pleases.

To add insult to injury, instead of keeping within the physical body, it sort of oozes out of its original borders and takes over more and more of the territory of experience, eventually seeping through and soaking into the entire fabric of one’s existence.

Pain Becomes the House We Live In

What was originally on the inside, now feels like its taken over the outside, too. Like you are within it, instead of it within you. At that point, pain isn’t just here or there, it’s everywhere.

It’s really very strange, and challenging to explain to others who haven’t had the experience. It’s like nothing else. Sometimes it feels like an unwanted house guest who never leaves, but eventually it feels like the house itself.

You’re surrounded by a field of pain and everything you see, do, hear, express, or receive must pass through the ever-present fog of the pain zone. I think this might be the most difficult thing for others to understand.

Pain is no longer just part of our experience of life. Life must now take place completely immersed within it.

Too Late For A Band Aid

I think this is one reason it’s so hard to find treatments and modalities that actually work for chronic pain. It’s complex and has become interwoven with the whole self and the whole body and the whole nervous system and everything that is offered is just way too small, or too specialized, or too directed to a single aspect of this all-encompassing thing, called chronic pain.

It’s sort of like calling in the plumber to fix the leak in the kitchen sink when the whole house has just fallen off a cliff.

The well-meaning plumber focuses on the kitchen sink and says, here, let’s change the washers or whatever and you’re living in this disaster of a house that needs all kinds of different and simultaneous attentions and the plumber just can’t see past the broken faucet.

Or something like that.

Looking for the Door that Lets Pain Out

I’m looking for the door that lets the pain out, like on a spaceship and you open it and everything is sucked right out — the whole atmosphere of planet pain – and then you get to close the door and start over.

But I think the door I’m looking for doesn’t open out like that, it opens in.

Anyway, I’ll let you know as soon as I’ve found it.

Images Courtesy of Pixabay

Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She  is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain (New World Library June, 2018).

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Getting Past the Sadness and Isolation of Living with Chronic Pain

This post was originally published as a guest post for Counting My Spoons, June 18, 2018 LINK All of us living with chronic pain are aware of how difficult it is on a physical level. Very aware, most of the time. But what we sometimes don’t acknowledge is the immense toll living with physical pain takes on our emotional life as well.We are usually so immersed in the demands of our body pain, that we feel we don’t have the energy or capacity for dealing with our emotional...

This post was originally published as a guest post for Counting My Spoons, June 18, 2018 LINK
All of us living with chronic pain are aware of how difficult it is on a physical level. Very aware, most of the time. But what we sometimes don’t acknowledge is the immense toll living with physical pain takes on our emotional life as well.

We are usually so immersed in the demands of our body pain, that we feel we don’t have the energy or capacity for dealing with our emotional hurts at the same time. These include: sadness, frustration, blame, shame, resentment, anger, hopelessness, isolation, and loneliness to name a few.

Sometimes we’re not dealing with them because we feel like acknowledging them will take us under. It’s just too much. Sometimes it’s because they seem like feelings we just have to live with while we’re living with pain. And sometimes, we simply don’t realize they’re there because they’ve become the ocean we swim in every day.

But if we don’t recognize and begin to work to relieve some of our sadness, loss, anger and shame about being in pain, we might find ourselves trapped inside the weight of our own grief and hopelessness. If ignored for too long, the emotions we don’t find a way to acknowledge and express can lead to depression, bitterness, and despair.

Let’s not go there. Let’s see what we can do to relieve the sadness and isolation of living with chronic pain and create a greater sense of ease and well being, even while we’re still living with pain.

Suggestions for overcoming the intense emotions of living with chronic pain


  1. Find someone to tell your pain story to –someone who will listen without trying to fix anything or assign blame. If there is no one you can trust to do that, talking to a pet is a surprisingly good second choice.
  2. Find creative ways to express your pain. Your physical and emotional pains can be expressed through art, writing, singing, dancing, or even howling.
  3. Find someone you can help, either through sharing your insights, becoming a companion, or being an understanding listener.
  4. Don’t isolate yourself. We all have days when we don’t want to go out. That’s understood. But human interaction is a basic need. Find ways to reach out and be with others, even if in brief amounts of time.
  5. Stay engaged with life. What did you used to love to do that you’re not doing now? How can you participate, if only for a short time or in the most minimal of ways? What new things can you learn about and participate in?
  6. Connect with the greater part of you that lives beyond this pain. This can be done through prayer, meditation, music, or other creative expressions with the intention of accessing the greater You.
  7. Re-connect with your dreams of the future. Create a dream that includes the person you are becoming through this journey with pain.
  8. Don’t stand still either on the inside or on the outside. This leads to a feeling of stagnation. Find a sense of movement, no matter how small: physical, emotional, creative, or spiritual.
  9. Be kind to yourself. Speak to yourself and to your body soothingly and with love.

Remember, as I often say, pain is a landscape we’re moving through. It is not the totality of who we are. We only lose our way if we sit down and give up.

As we travel along our path through chronic pain, let’s remember to be kinder and more compassionate toward our bodies and to our whole self, feeling what needs to be felt, expressing what needs to be expressed, and loving the parts of ourselves that are asking to be loved.


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Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She  is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain (New World Library June, 2018).



When Your Doctor Causes You More Pain

{This article appears in The Mighty as "4 Things You Can Do If Your Doctor is Causing You More Emotional or Physical Pain"} One of the most challenging situations for those of us in chronic pain is working with a doctor or another medical practitioner who is unable to see or understand the intensity of our pain. They may also feel that its longevity is either questionable, or somehow due to something we, as patients, are not doing right.Sometimes we are told to do things that are...

{This article appears in The Mighty as "4 Things You Can Do If Your Doctor is Causing You More Emotional or Physical Pain"}

One of the most challenging situations for those of us in chronic pain is working with a doctor or another medical practitioner who is unable to see or understand the intensity of our pain. They may also feel that its longevity is either questionable, or somehow due to something we, as patients, are not doing right.

Sometimes we are told to do things that are painful for us, and are not believed when we report that it hurts. Sometimes we are told that we simply can’t be in the pain we’re in. Doctors have made a career of helping people in pain, yet when they invalidate our experiences, they inadvertently cause us even more pain.

How does this happen? How do highly trained, and usually very caring, individuals end up causing more pain for the patients they are trying to cure?


4 Ways It Can Go Wrong

This can manifest in a number of ways:
1. A treatment or protocol isn’t working, or is causing more pain, but the doctor insists that we continue or try harder because they believe in the treatment more than in our feedback.

2. The doctor may have experience working with people in pain, but has never had to live with chronic pain, so he does not understand the difference between short-term pain (that usually responds readily to treatments) and long-term pain (which is a different beast altogether and multi-layered). They do not understand the side effects of chronic pain which can include loss of brain power, fatigue, spaciness, and sleep deprivation, so they simply don’t take these into account.

3. The doctor may not believe that our particular condition causes the level of pain we are in and works with us as if we have a different version of our condition, or a different condition altogether.

4. The doctor has a desire to help, but would rather believe that we are wrong than to admit they are unable to offer us a cure.

As a patient, this is very difficult to deal with. It makes us feel unheard, misunderstood, and belittled. Not to mention the fact that we may feel shamed for not healing as fast as we’re supposed to, or for not responding to treatment in the way everyone hopes we will.


This is not to say that there aren’t doctors out there who listen to their patients. There certainly are caring, compassionate, and sensitive doctors who take note of what their patients report, while adjusting their treatments and recommendations accordingly.  But, unfortunately, there are many who don’t listen, cut patients off when they’re trying to explain what’s going on, or discount what they do hear.

For doctors who fit into any of the above categories, unfortunately, the fact that the treatment they are offering isn’t working doesn’t always indicate to them that they need to find different ways of handling chronic pain. For some of them, it’s easier to blame the patient.


What Can We Do About It?

What can we, as patients, do?

It’s important to learn to speak up for ourselves. However, when we’re in pain, it can be very challenging to take a stand of any kind. We’re usually exhausted and operating on limited brainpower. Often it’s difficult to do anything more than barely stumble through a medical appointment. But I do feel that it is up to those of us who live with chronic pain to educate the medical establishment when we have the opportunity to do so.

I have written some talking points below to help you begin the conversation with your doctor, should the need arise.

You can also use my Statement for Practitioners on my website Resource Page as a basis for having a conversation or print it out and take it with you to appointments.

Here are some talking points you might use:

1. I respect you as an expert in your field. I ask you to respect me as an expert in how I am experiencing pain in my own body.

2. My direct experience is the most valid basis we have to assess how treatments are working or not working, and I ask you to be willing to listen to my feedback and take it into account.

3. When you insist that you know more about my experience of pain than I do, I feel belittled and invalidated.

4. If treatments do not work for me in the same way they do for the majority of your clients, it does not mean I am not trying hard enough. It does not give you a basis for discounting my experience. It means there is something new to learn here.

One thing that can be very helpful is to keep a pain diary, a record of the kind and level of pain you experience from day to day, to bring with you to medical appointments. A written record can go farther in validating your pain experience for you than verbal explanations and a detailed diary can seem more real and believable to your doctor. You can download a template for a pain diary from my Resource Page.

It’s too bad that those of us who are already in pain sometimes have to endure more pain, both physical and emotional, when we’re working with certain doctors. I wish it were not so. But, I believe, since some seem less well equipped to work with long-term pain, it may be up to us to educate them with our gentle, but insistent truth.

Getty Image by becau


Sarah Anne Shockley
 has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She  is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain (New World Library June, 2018).

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How to Find Hope & Meaning in Chronic Pain: VIDEO

When pain seems to take all our attention and all our energy, how do we find meaning? How do we re-engage with life? Image: ThinkStock Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She has been a videographer in the past, and co-produced and directed Dancing From the Inside Out, a...

When pain seems to take all our attention and all our energy, how do we find meaning? How do we re-engage with life?
Image: ThinkStock
Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She has been a videographer in the past, and co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company (integrating wheelchair and able-bodied dance).  Sarah was a columnist for Pain News Network and is currently a regular contributor to The Mighty and ProHealth websites. She is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain (New World Library June, 2018).

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If You're Wondering Why I've Been in Pain for So Long: VIDEO

The written version of this (which I did for The Mighty) got such a great response, I decided to make a short video based on it. See what you think. Based on If You're Wondering Why I've Been in Pain So Long, on The Mighty. Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She has been a...

The written version of this (which I did for The Mighty) got such a great response, I decided to make a short video based on it. See what you think.
Sarah Anne Shockley has lived with nerve pain from Thoracic Outlet Syndrome since 2007. She has been a videographer in the past, and co-produced and directed Dancing From the Inside Out, a multi-award winning documentary on AXIS Dance Company (integrating wheelchair and able-bodied dance).  Sarah was a columnist for Pain News Network and is currently a regular contributor to The Mighty and ProHealth websites. She is the author of The Pain Companion: Everyday Wisdom for Living with and Moving Beyond Chronic Pain (New World Library June, 2018).

SUBSCRIBE!



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