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This is the short video summary of one of my popular recent posts which lists 7 important ways that chronic pain taught me to take care of myself and create greater well being, even while living with pain.
Everyone who has been in pain for some length of time has probably asked themselves these questions: Why is this happening to me? What did I do wrong to deserve this?
Many of us struggle with feelings of guilt and shame for needing help, for not being able to fix ourselves, for probably asking too much of everyone around us, for causing people to feel bad for us, for needing financial assistance.
To add insult to injury (literally), there is a prevalent New Age attitude that says if you just visualize and think positively, you can change anything you don’t like into the way you want it to be almost instantly.
The secret to the perfect life is “in our heads.” If we’re poor or unfulfilled or in pain, we just need to “think differently.”
Just Think Positively...
Don’t get me wrong, I’m all for thinking positively. I practice it every day. It has made a huge difference in my life many, many times and still does. But the idea that people who can’t move out of pain have somehow failed as people has to go.
After years of working through all manner of New Age palliatives to change my beliefs, the way I speak, the way I think and how I perceive myself – resulting in very little perceptible change in my painful condition – I’m here to say that sometimes, when you’re in pain and you can’t get out, it’s not because you’re not thinking positively enough.
Some pain comes in and won’t leave. There may not be a tidy explanation, but it doesn’t mean we are off our center, or lacking in some fundamental way, or not good people, or not in alignment with God or the Universe, or haven’t prayed or fasted or meditated enough, or burnt off our karma yet.
Being in pain does not automatically put you at fault.
The fact that you don’t have an off switch for your pain does not mean you aren’t trying hard enough or that in some insidious way you must want to be in pain. It does not mean you have failed, or must have been a terrible person in a past life.
Asking Different Questions
Being in pain doesn’t prove anything negative about you at all. An estimated one in three Americans are in pain right this moment. That’s a lot of people.
So, the questions we might want to begin to ask about all this pain may be more about ourselves as a culture rather than ourselves as individuals.
Yes, we may want to ask ourselves, What can I do differently in my life to relieve this pain?, but we also may need to ask, How are we, as a people, creating so much unrelenting pain? Then the answers become less of a private struggle and more of a community effort toward greater harmony and balance at all levels of our lives.
And if this epidemic of pain is as much of a collective as a private experience, then maybe part of the solution is to understand that we are, somehow, all in this together.
That the healing needed may not be only along a solitary path, but something we need to address as a society. We have somehow created a culture where violence and alienation is the norm and, perhaps, our painful bodies go hand in hand with that. Isn’t it even remotely possible that some of us may be feeling this collective alienation as illness and pain in our bodies?
And This Helps Me How?
And you might well ask, how does speculating about this help me with my pain today?
For me, as much as I would not want to wish this experience of pain on anyone, it eases my mind to know that I’m not alone in it, that there seems to be something bigger at work here than my own private path through it, and that, while the answer may not be easy, it may also not be entirely up to me to figure it out all on my own.
And, right now, today, that is something of a comfort.
(This article also appeared on The Mighty.)
When we’re in severe or chronic pain, our normal life is not available to us in the way it used to be. It isn’t the same as going on vacation, or moving to another town, both of which we consciously choose as enjoyable breaks from the everyday.
Instead, living in pain feels like being taken out of life. Our normal life recedes to a distance at the same time that the feeling world of pain becomes incredibly close, immediate, and demanding. Pain becomes our experience of life.
We may still be physically present, but most of our energy and attention is busy elsewhere, trying to attend to pain or keep it at bay or heal our bodies or worry about how it will all work out. We simply aren’t available to, or involved with, everyday life in the same way, and it does not feel like everyday life is available to us, either.
The time spent in pain can feel like lost time. This is particularly sad when you cannot attend or participate in important events, or when you must do so in your aura of pain. Even when you can participate, pain limits your enjoyment and leaves you with a feeling of not having been entirely present.
My time in pain has been particularly heartbreaking for me in terms of being a parent. I have been unable to participate and contribute in many of the ways I have wanted to, and I have felt an immense sense of loss.
I used to be a world traveler and very active, so I had planned to travel and go backpacking and camping with my son. When I was injured, I was in the process of teaching him to swim, and we’d gotten our bicycles tuned up for some long rides. All that went out the window.
In addition to that loss, I was no longer able to work, which meant that I lost not only my ability to support myself financially but my hopes and dreams for my career. This was also true of my avocations. I had begun a series of watercolor paintings and had some interest from art galleries, but my injury forced me to put that project on the shelf indefinitely.
Anyone who experiences pain over time has stories like these. You feel sadness and loss not only for the time and experiences that are eaten up by pain but also for lost dreams and goals, as if your connection to the future is being consumed by pain, as well.
Following are three suggestions for ways to relieve the sadness and loss inherent in living with pain.
View Pain as a Landscape You're Passing Through
Since pain feels all-encompassing while you are experiencing it (I think that’s why we describe it as being in pain), it’s easy to lose the ability to imagine anything else. It can be really difficult to remember what it feels like not to be in pain.
One day I woke up and realized I didn’t have a sense of a personal future anymore. I had simply stopped dreaming, because it seemed like my life was just going to be an endless stream of days in pain. So I started to think of pain as a landscape that had edges. It had a beginning, therefore it must have an end. Somewhere.
The landscape was nasty, ugly and burned-out, but it was only a landscape, a place I was walking through, not the entire world. I told myself that I would eventually reach other landscapes. I was just passing through this one.
This helped restore a sense of having a future. Soon after creating and working with the various exercises and antidotes in my book, The Pain Companion, I began noticing more green on the horizon of my pain landscape, buds on the blackened branches, and a rustle here and there in the bracken denoting small things coming back to life.
Look for the Gold in the Ashes
I have found it very difficult to deal with the sense of loss I feel due to the amount of time I have spent in pain. I have had to reframe the way I see those years. Instead of representing life lost, they represent a different kind of life, equally valuable, even if I couldn’t yet completely see how.
When I went in search of the gold in all the ashes, I realized that my son had learned some valuable life lessons through my painful condition.
He learned to think about someone else’s well-being other than just his own and not to take life and health for granted. He learned that he was important and his contribution really counted, since I needed his help daily to do basic household tasks.
Living in pain can give you valuable insights. You will be bringing back a greater awareness of what others suffer and greater compassion for others. You can develop a fuller sense of gratitude for all the relationships in your life and a deeper appreciation for your body.
If you decide to delve more fully into the emotional aspects of being in pain, you may find expression for difficult feelings that need to move on. Working through these emotional aspects can allow a greater sense of freedom in life, even while you are still in pain.
Choose New Meaning
And, finally, when it feels like life in pain is meaningless, I remind myself that it is I who chooses the meaning of my life.
I can decide that I have wasted or lost the years I have been in pain, or I can choose to see them as years with a different kind of meaning.
Through my time spent with pain, I have, sometimes begrudgingly, learned a great deal about what it is to be a human being and how to find a deeper sense of an overreaching arc and flow in my life and the value of life’s natural vicissitudes.
(This article appeared in The Edge Magazine and is excerpted from The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain by Sarah Anne Shockley (New World Library, 2018)
Chronic pain can be very isolating. We may have very few people to talk to who understand what it’s like to live in constant pain. There may be no welcoming place to speak openly about our fears and difficulties with those who are meeting similar challenges and who will not feel sorry for us or try to fix us.
If we have restricted mobility we can feel even more isolated. Being unable to participate meaningfully, we may feel disconnected from the world, life and others. We’re still alive and in life, yet we don’t feel nearly as much an active part of life. This can feel extremely lonely.
However, it’s not impossible to maintain an active social life while suffering from pain if you keep the five antidotes to isolation and loneliness below in mind.
Don’t Cut Yourself Off
You might feel that the best way to deal with the limitations imposed by deep pain is to simply stop socializing altogether, but over the long run, this may not be a healthy choice. You may certainly need to limit how much you go out if it exhausts you or increases your pain. You’ll need to become an expert at monitoring your own energy and pain levels so that you don’t overdo it.
Here are some simple suggestions for being with others while taking care of your pain levels:
Organize Regular Visits
If you can’t get out, or if going out is too exhausting, phone or email friends to come by and visit, or ask a family member to contact a list of close friends for you. Choose times when you’re apt to be most energetic and organize regular short visits from friends.
Your friends will usually feel good about having a clear way to help and to keep a connection with you. Let them know what you’re capable of in terms of length of time and any activities you can participate in, or if you just want to chat.
Ideas for simple activities with friends might include reading aloud installments of a novel by your favorite author, working on a jigsaw puzzle or crossword together, playing cards, discussing events at work or in the neighborhood, sharing a home-cooked meal, watching a movie, posting updates on social media or listening to music.
If your friends ask if there’s anything they can do to help while they’re there, say yes! Have a list of small tasks they can choose from. These tasks could include quick cleaning (wiping kitchen counters, dusting or vacuuming a room); making a light meal; doing some shopping or laundry; picking up prescriptions; helping you read and fill out forms; answering emails or making phone calls for you; or doing research on your condition on the internet. More energetic friends can scrub your bathtub, mop floors or cook full meals to freeze for later use.
Use Nature's Solace
Spending time outside in trees or by water really helps restore a sense of connection with all of life. I try to spend a minimum of 30 minutes outside every day, either walking or sitting near trees.
I listen to the breeze, to the birds, to the creaking woods, to the rustle of small animals, to my breath. I find it very calming, and it reminds me that I’m still alive and that life is still all around me in all its forms, no matter how my body feels. When I can, I arrange to meet a friend who doesn’t mind walking slowly and for a limited distance.
Practice Positive Presence
Being in pain, I didn’t feel as friendly as usual and frowned more often. It felt like pain had created its own atmosphere around me, and it was acting as a shield towards the world.
I decided that, even though I couldn’t stop the physical discomfort I was in, I didn’t have to withdraw from others completely. When I did interact with others, it was always through the pain and seemingly from a distance created by that pain. But I decided that, even though I couldn’t stop the physical discomfort I was in, I didn’t have to withdraw from others completely. I could be present in my life despite the pain.
I began to initiate small conversations with other people in line at the coffee shop or grocery store, with checkout people and neighbors. The conversations were necessarily brief, but I made a practice of making them as sincere as I could. I found it made me feel better to smile more, and it made people around me feel better, too.
When I’m with my son, instead of noticing how much pain I’m in, what I can’t do and how tired I am, I try to focus on him. I focus on being very present with him. I laugh more. I try to be very there when I interact with others, and in that way I’m more available to people around me, if only briefly.
Through this practice, I’ve noticed that I can still have a positive effect on others, even when I feel like hell. It’s a challenge because of the pain and because of the sense of distance pain creates, as if you’re talking through a fog, but it helps. These things can shift my feelings of loneliness and isolation. I’ve found that I don’t have to be healed or pain-free to find ways to remain part of the life going on around me.
Find Online Communities
The Internet is a great place to find information and a good read, but it's also become a place to create community.
Connecting online with others in a similar situation can help you feel not quite so isolated and alone. You may not be able to meet them in person, but knowing they're out there can itself be very comforting. And with an online community, you can choose how much you wish to interact and when.
An example of an excellent online community for chronic pain and chronic illness is The Mighty. There are also many Facebook groups that are specific to certain conditions where you can ask questions, share stories, get advice, find out about resources, and offer a helping hand to someone else.
Summary of the 5 Antidotes to Isolation
(This post is adapted from The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain. A lengthier version of this article appeared in The Mindful Word as Lonely No More)
Welcome to The Pain Companion Blog! Reflections and sound advice on living with chronic pain - a peaceful way station on the path to greater well being.
About Sarah Anne Shockley
© 2015-2020 Sarah Shockley and thepaincompanion.com. Excerpts and links may be used, provided that full and clear credit is given to Sarah Anne Shockley and www.thepaincompanion.com with appropriate and specific direction to the original content.