Blog Posts

When No One Understands Your Chronic Pain

8/6/2020

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

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When Chronic Pain Turns You Inside Out

7/9/2020

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The first several years of living with pain is a constant search for answers. What is going on? What caused the pain? How can I stop it? How can I heal? What am I doing wrong?

After years of looking and looking for ways to end the pain in the world of physical treatments and pain relief, we can become discouraged and frustrated when no clear solutions appear. When everything we try either has little no discernible effect, or actually makes things worse, it seems like there are no answers “out there”.

The Inner World of Pain

Pain is a paradox to begin with. Something “out there” causes it - some situation, some bacterial or viral invasion. So, we naturally look for all the answers to pain on the outside.

But we experience pain “in here,” in our bodies, and we also experience it in our private inner worlds. It informs everything. How we see ourselves, how we feel about life, what dreams we give up and what we create. This pain that comes from the outside may not respond to treatments applied from the outside and affects us hugely on the inside, almost forcing us to go inward to look for a different level of answers.

When we do that, it’s important to avoid the negative inner path, which can look like this:

What’s wrong with me?
Why can’t I stop this?
How did I let this happen?
Why is this happening now? To me?

Most negative questions are versions of the first one: what’s wrong with me? With these questions our self-doubt grows, and we lose confidence in ourselves and in our ability to heal. We can also lose our trust in who we are and our trust in life.

Asking Different Questions

Going within in a more healthy way might be to ask these kinds of questions:

How is pain asking me to change? Who is it asking me to become?
What messages does it bring?
How can I find useful ways to communicate with it?
What resources lie within me that I may never have had to tap before?
How can I maintain a sense of my whole self in the midst of this pain?

These questions aren’t easy to answer, but they tend to lead to more positive approaches to living with pain than the first set. If we let pain turn us inside out, so to speak, we may discover that pursuing answers to these questions can release some of the stress and anxiety that comes with living in pain. This can promote greater inner peace and well being, which may actually bring some reduction in our overall levels of pain.

So, when we despair of finding answers “out there”, we might try turning our attention inward to tap our own personal wells of inner wisdom.

Image: Lycinna, John William Godward (Wikimedia Commons)

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When I Lost My Sense of Self in Chronic Pain

11/5/2019

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During the worst of my pain, I no longer had a memory of my body without pain, even in my imagination, and I couldn’t envision a pain-free future, even though I desperately desired it. I had forgotten who I was without pain, and I was scared of who I was becoming from the experience.

Pain had become so embedded in my body, my daily routines and my awareness, that this constant companion had become too familiar, like a terrorist and his hostage. Pain had been with me for so long that I wasn’t sure what would be left of me if and when it finally departed.

Would it take most of me with it? What would it mean about who I am if pain never left? Do I even know who I am anymore?

Rediscovering Myself After Pain

In order to find myself again and to re-engage with the “real” me (as opposed to seeing myself only as “the one in pain”), I had to disengage my self-image and feelings of self-worth from my experience of pain and my body’s limitations.

I worried that my injury, my pain, and my being in need of assistance had turned me into a weak and needy person. I had to realize that just because my body felt weak, it didn’t mean I was weak as a person. Just because my body was in pain, it didn’t mean I had become the pain.

I realized that because I had been in pain for a long time, I had been living almost entirely in reaction to pain. I had allowed pain to become the organizing principle in my life, the central power. I had shifted all my choice making onto pain’s shoulders. After all, it seemed to rule everything.

It seemed like the only choice there was, but there was a subtle but important shift that was necessary for my healing process, and that was to move the responsibility, power, and decision-making back onto my own shoulders. This became part of dis-identifying with pain and disentangling myself from it.

While pain was certainly the reason I couldn’t do many things, I needed to stop thinking of it as the director of my life.

Dis-Identifying with Pain

The process gradually unfolded something like this:

1. Pain Arrived: I resisted, did all the “right” things, including therapies and medications. Pain didn’t leave, so I tried harder to get rid of it, adding alternative therapies, prayer, more willpower, more and different medications etc.

2. Pain Stayed: It still wouldn’t leave. It even got worse. The longer I lived with pain, the more difficult it became to see myself clearly as a person with pain, rather than as the pain.

3. I Learned to Work With Pain: I eventually came to a place of honoring pain’s presence and its unusual gifts. I recognized pain as something that was trying to heal itself in and through me. I stopped resisting and fighting against pain (which seemed to only make it worse anyway) and begin to work with it and through it, regaining a sense of self that was not utterly beholden to pain as dictator and director.

4. I Realized Pain Was Only One Aspect of My Life, Not the Totality: I learned to work with pain differently, seeing both it and myself from a different perspective. Pain represents a very demanding part of my experience, but it was not who I was. It was a landscape I was walking through. My inner self was still intact.

By not fighting and resisting, my whole body became more relaxed. Pain was still with me, but not as acute, and I began to have a greater sense of well-being despite its presence.

My body began to heal because I was allowing myself to breathe more deeply, stop demanding pain to leave immediately, relax around the situation I was in and take my time. I was then able to ask myself who I wanted to become as a result of the incredibly challenging experience of living with pain. What have I learned from this experience? What can I share? What can I give others?

When I reconnected with my inner self while still in pain and didn’t wait for it to leave, I found a sense of renewal. It was a challenge at first, but I came to accept all of my experience with pain as part of a greater path, putting myself at the center rather than pain.

This simple but profound shift allowed me to begin to live with more ease, grace, well-being and inner peace. Over time, this has led to greater healing and greater release of pain.

This article is also on The Mighty as When I Lost My Sense of Self Because of Chronic Pain

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Listening to Chronic Pain

9/23/2019

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After one of those nights when I shift around trying to get comfortable, but each new position feels worse than the last, I ask myself, “What is this all for?”

Which leads to a whole bunch of questions. What is pain’s ultimate purpose? I mean, sure, there’s a physiological reason for pain most of the time, but is there something beyond that, something with a deeper meaning or higher purpose that will help me make sense of why my pain won’t leave?

What if pain is the hand that pulled me back from some dangerous precipice? It’s uncomfortable, sudden and shocking even, but maybe it saved me from something worse. Maybe it kept me from going further down a path that would lead to even less health and well-being. What if pain is my body’s last resort to get my full attention?

Maybe pain is the only way I’d slow down enough to take a good look at myself and my life. Maybe being in pain was the only way I was ever going to really change.

If I look at what pain has demanded of me, it makes some sense. Pain asks me to look inward, to be in my body, to live in the moment, to take stock, to re-prioritize, to slow down, to let go, to simplify. I resent the fact that pain forced me to do these things, and I would prefer to have chosen them on my own, but I didn’t.

So is pain pointing me toward a renewal of spirit, a renewal of life? If so, then pain has become a major course adjustment in my life when I needed it most.

It seems that part of my healing is learning the messages pain brings with it. I’m learning to re-engage with life on different terms, more health-giving terms, more self-honoring terms, more going-at-the-speed-of-well-being terms.

So the questions become: How is pain asking me to change so I can heal? What is it pointing toward? How might it be pointing toward a different life that, for reasons I may not fully understand, could not be possible without having gone down this painful path in the first place?

And to find that new life, I have to listen to myself, listen to my body and yes, even listen to my pain.

This article also appears on The Mighty as "Answering the Questions my Chronic Pain Asks"

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Using Anger as a Positive Force in Life with Chronic Pain

8/29/2019

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We run through the gamut of emotions when we’re in chronic pain, sometimes all in one day. We may experience loss, sadness, overwhelm, fear, anxiety, shame, isolation and anger to name a few.
Anger can be used to perpetuate resentment and blame, or anger can be used for healing.
Here’s how I have found ways to use it for greater well-being.

Step One: Acknowledge anger and feel it.
There is nothing inherently wrong with feeling angry about what happened in our lives to cause our pain and suffering. In fact, for people stuck in depression and sadness, anger can be a very liberating force.

Anger is a natural response to living with pain. Let’s just acknowledge that as a given. We feel angry at pain because it is so insistent and faceless, a force that can’t be reasoned with or bribed or cajoled or bargained with.

We can be angry with the medical system for not having the answers, and we may wrongly blame ourselves for having unwittingly made choices that somehow led to this pain. And we’re angry for not being able to find our way out again.

So the first step is to acknowledge any anger you may be carrying. Just don’t stay in it so long it becomes bitterness and resentment. Move on to Step Two.

Step Two: Release resentment and blame.
Resentment and blame is anger that has festered and become bitter. I have not found them to be compatible with healing. Rather, they seem only to serve to keep pain in place.

It is easy to fall into the pattern of looking for something to blame our pain on (including ourselves), but it really isn’t a useful strategy for healing. I recommend deciding to relieve everyone and everything from the burden of blame, even if we feel it is deserved.

The point isn’t whether or not we’re right and justified, which may well be the case, the point is that holding onto blame and resentment is stressful and counterproductive.

The energy of blame is always looking backward and we need to marshal our resources in the present so we can heal and have a better future. Best to leave the past to the past as much as possible.

Step Three: Use anger as fuel for healing.
Anger has a lot of energy in it. Rather than sitting still and feeling powerless, anger wants to move and change things, so it can be a very helpful emotion when harnessed for good. It can move us out of the doldrums and into positive action.

We can use the moving energy of anger to motivate ourselves. We can put all that energy and attention on healing, on opening up our options, on being creative about combining traditional and alternative approaches to wellness.

Anger that has festered serves to close us down. It limits our thinking and we don’t see opportunities when they present themselves. It also has negative physiological effects. When we’re constantly revisiting how bad things are, we breathe more shallowly, we contract more, we don’t sleep well.

Anger used for fuel can open us up as we release its energy into anticipation of positive movement. Our minds are more open to new ideas, we breathe more deeply and naturally, we get more restful sleep because we are more hopeful.

We had no choice about getting sick or becoming injured or disabled. But we always have a choice in how we are going to respond to our situation, every moment of every day.

Who are we being while we are on this journey through pain?

We can’t expect ourselves to be happy and perky every moment, not at all, but we can begin to let go of some of the detrimental affects of holding onto anger. Instead we can acknowledge it, feel it and then use it. We can recognize how much energy it holds and harness it into positive choices and positive actions to support a journey toward greater well-being.

(This article also appears on The Mighty)

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