After my flare at the end of last year (which I talk about a bit here), and the months of getting through it, I started reading a book on pain called Pain: The Science of Suffering, by Patrick Wall, the guy who literally co-wrote the textbook on pain. I took my time, just recently finishing it, and figured I’d share some of the insights I gained into my own chronic pain issues that others may relate to as well, particularly in the realm of pain-related stress, fear, and anxiety and the difficulty we all seem to have talking about pain, a topic that makes many of us uncomfortable (those who are in pain and those who are not, alike).
First off, pain is highly complex and highly individual. Everyone experiences pain differently and each of those pain experiences are based on all sorts of factors, including physiological processes, neurological responses, cultural influences, thoughts and expectations, past experiences, learned behaviors, interactions with doctors/therapists, social support, immune reactions, nutrition….pretty much ‘life’.
And pain is always accompanied by emotion and meaning, it is never an isolated sensation bereft of context and feelings. This is important as the meaning, feelings, reactions – the milieu of context and emotions that surround each pain episode – often influence pain much more so than the pain itself.
Pain is pretty straight forward in acute pain. Signals alert us to the possibility of danger and the body responds accordingly. If there is danger present, we seek escape, if there is damage present, we seek treatment and pain relief. Eventually, the danger subsides, the pain is ameliorated, we go on with life.
Things can get a bit wonky in chronic pain, though. When pain persists in the absence of danger or damage, the pain becomes more worrisome. The longer the pain goes on, particularly when there isn’t diagnosis or when treatments have been unsuccessful, the more pain affects all aspects of a person’s life.
Pain colors everything we do, everything we think, everything we plan, everything we hope for, everything we worry about…just everything.
That’s been my experience, anyway. First with my injury, which didn’t heal when I thought it should; then after my surgery, which was supposed to fix the injury and therefore fix the pain but the pain didn’t resolve; and then during each subsequent flare-up.
Even once I got used to the pain and was able to successfully manage it to the point I could lead an active, engaging, meaningful existence, I was, and still am, greatly affected by each flare-up, when the pain comes back full-force and surprises the heck out of me once again.
Every flare-up leads to worry, it seems. Pain once again consumes my thoughts, I feel hopeless, fearing my whole life will just be one blinking neon sign flashing PAIN PAIN PAIN. It’s like I’ve never been there before, no matter how many times I’ve been through it. I get through that phase much faster now, but it still surprises the heck out of me that it’s still a thing!
Each pain experience is unique, but we are also not alone
Pain, worry, fear, being surprised by flare-ups, these are not my experiences alone, although I thought they were for a long time. It wasn’t until I started researching chronic pain and talking more openly about my own experiences that I realized just how pervasive pain conditions are and how, although each pain sufferer is uniquely affected, we all share a great number of similarities as well.
One of the things that most struck a chord with me while I was reading Pain: The Science of Suffering was Wall’s observation that pain monopolizes a person’s world: pain becomes their sole focus, taking up all their attention, leaving little capacity for everyday undertakings like eating, talking, chores, and the simplest of decision making.
When you’re in pain, normally effortless tasks can suddenly feel unmanageable, they become monumental feats that seem impossible to even attempt, let alone succeed in accomplishing.
It’s quite stressful.
Little things, normally inconsequential things, exacerbate the stress, and thereby exacerbate the pain.
It’s not always like this, mind you, but even though it may be a brief spate of time in the grand scheme of things, it can feel like a lifetime when you’re in the midst of it.
Pain can feel hopeless, endless. It can become increasingly difficult to put up a strong front and keep a positive outlook.
Persistent pain can break you down, mind body, and spirit.
It can lead to worsening fear, increasing anxiety sleeplessness, and/or depression, which each in turn feed back into the pain. The more pain there is, the increasing amount of attention and resources devoted to the it, making the pain worse, prolonging it’s duration, leaving little room for anything else. And that can lead to worsening fear, increasing anxiety, sleeplessness and/or depression.
It’s can be a vicious cycle!
At the same time, while all of this fear, worry, and stress is going on, many people living with pain don’t want to ask for help, even though this is when we most need it.
We don’t want to burden others, don’t want to make others feel awkward or uncomfortable around us, don’t want to let others down.
We feel guilty. Ashamed.
See how complex pain is? How emotionally laden? How contextually driven? How fluctuating? It’s not just an ‘ouch’ or just a sensation or just an isolated experience. It is a part of life, and life is complex.
Chronic pain as a part of life
Pain involves and becomes a part of every aspect of one’s being, particularly during the bad days.
The bad days are when all those other areas of life are most affected – work, relationships, daily decisions – and others don’t quite understand it (yesterday she was fine…last time we did this he wasn’t so grumpy…why can’t they just make a decision, it’s not that difficult…why is she so anxious every time we go out?…he called in sick, again?).
Not every day is a bad day, thankfully, but this can also make it more confusing for the folks who know someone who has a chronic pain condition, or for the people in pain themselves.
The good days
On good days, people with chronic pain can be active, happy, engaged, and handle decisions, large or small, with no problem. It’s these good days that are most cherished, but can also make the bad days all the worse.
Good days look like this :)
The good days can also lead people to think the person in pain is going to be fine from now on, that they’re cured, that they’ll no longer have pain. That’s not usually the case, though, which a lot of folks don’t understand unless they’ve been through it.
Good days can span weeks, months, years, even, for some folks, but the pain will often come back. And when it comes back, we often reenter the dark phase, the stressful phase, the fear- and anxiety-laden phase, forgetting we’ve been there before. But once again we’ll get through it, just like we always have.
It’s a very un-fun roller coaster.
For me, once the pain of fog is lifted, and I’m through a flare, it’s almost like it never happened. I forget. This doesn’t help for the next time the pain flares and I once again enter the netherworld of pain, where it consumes my thoughts and I feel as though I’ve never been there before and that there is no way I’ll ever escape.
I blame myself and try to figure out the cause, what ‘I did’ to bring this on, my stress levels go up, I feel more anxious, I feel trapped and like I can’t get out of it: I feel that my world will be that flashing neon PAIN sign.
Why we need to talk about pain
Thankfully I’m now at a point where I’m having many more good days than bad, which I’m incredibly grateful for. I’m writing this post on a (relatively) pain-free day. A day when I can think clearly and reflect on those dark days and try to figure them out. I certainly can’t seem to do it when I’m in them.
I’m writing this post for all those who experience chronic pain or who know, work with, or care for someone who experiences chronic pain, in the hopes that they may understand it a bit more and that they’ll be a bit more willing to talk about it. And to remind myself in the future when I forget.
We need to talk about pain more, not just the science of it or the suckiness of it but the whole spectrum, the entirety of the lived experience of pain.
It helped me a great deal once I started talking more openly and honestly about my pain with my husband. There was so much miscommunication going on between us, or no communication at all, for too long. And we’d only talk about my pain after I’d break down, no longer able to take it, angry and frustrated, yelling and crying. I’d plead with him to help our, just a little bit, and chide him with ‘is it really so hard’?
On his end he had no idea how much pain I was in or how it was affecting me, no idea that it was getting worse, no idea that I’d soon reach this breaking point, because I never said anything.
As Wall mentions in his book, we as a society don’t do a very good job of dealing with pain. Those who are in pain are supposed to bear it stoically, never to complain or ask for help. We’re supposed to be strong, keep a positive attitude and not impose on others.
The friends and loved ones and even the doctors and therapists charged with helping those in chronic pain are ill-equipped to handle pain and all of its complexities. They often experience their own frustrations, fears, irritations – even anger. Understandably so. They, too, can feel burned out, exhausted, exasperated, and fearful (or doubtful, which may equate to the same thing) about the future.
Talking about pain realistically, honestly, and consistently can help, especially when we strive to do so without complaint, with minimal awkwardness, without trying to place blame or to ‘fix it’.
We can talk about pain without it being the only topic to talk about, without wallowing in it, without it consuming us. We can talk about pain like we talk about other everyday experiences; like work, hobbies, entertainment, eating, health and our daily interactions.
Talking about pain doesn’t have to be taboo and avoided at all costs
Viewing chronic pain through a different lens
Wall speaks of pain as a basic need, like thirst or hunger, which are present to get us to take action to satisfy the need. When we are thirsty we drink. When we’re hungry we eat. When we’re in pain, we try to get out of it.
When we experience pain we first try to remove ourselves from the painful stimulus. Then we’ll adopt a protective, typically immobilized posture to prevent further injury and optimize healing. Finally we’ll seek safety, relief from the pain and a cure.
This works great in acute pain (think about stepping on a nail, you’ll first remove the painful stimulus, you’ll adopt a walking gait that doesn’t apply pressure to the area of the foot that was impaled, and you will seek treatment and pain relief, and eventually the wound heals, the pain is gone, and your gait is restored back to normal).
But people with chronic pain are often stuck in the second and third steps. Even though we’re out of danger the protective postures remain, keeping joints immobilized through muscle tension that only serves to limit natural movement and function and no longer provides protection, rather it often further exacerbates the pain. And, perhaps most detrimentally, there is no sense of safety, no sustained relief from the pain, no cure and often no hope of one.
Sometimes the only way through, is through
The basic need is not met, which can lead to mental anguish, social distress, and physiological and behavioral changes that make the pain even worse and persist even longer.
I’m of a mind that sometimes the only way through that turmoil is to talk about it. To share stories, to get educated about pain, to educate others about it. To not have to bear it alone.
If someone told us they were thirsty, we wouldn’t judge them based on the fact that they were thirsty or based on their level of thirst. In that same vein, if someone tells us they are in pain, we needn’t judge them for being in pain or compare their level to pain to our own pain or other pains that we know of.
Just as someone saying they’re thirsty isn’t a big, awkward, trying ordeal, neither should someone saying they’re in pain be so.
Pain can be something we talk about matter-of-factly, rather than tread upon lightly or, worse yet, avoided completely. It doesn’t have to be without emotion, as mentioned above, pain is always packaged with emotion, meaning, and context, but it needn’t be dramatic, accusative, or despairing, either.
Talking about pain
Such practical communication can help all parties. The person in pain can feel more comfortable saying “I can’t go out tonight because I’m in the midst of a flare-up.” Their friend can understand that it’s not a personal affront to them and can offer words of support “I’m sorry you’re in pain today, I will miss seeing you but I understand.”
Spouses and caregivers can open up about their own fears and frustrations so that the person in pain understands that they’re tension or exasperation doesn’t arise from a lack of caring but rather, as in the case of my husband, may be from feeling unable to help effectively or not realizing how bad the pain is or how much it is affecting daily life (particularly if the person in pain is being stoic, being strong, keeping a positive attitude, and carrying on the best they can so as not to burden anyone).
Plans and strategies can be devised for good days and bad days, so everyone knows what to expect and how best to respond.
We can begin to understand one another better, this is life, after all, not just a one shot episode.
When pain is a part of daily life, as it is for those with chronic pain, it shouldn’t be ignored and avoided in our relationships. Neither should it define our relationships (or ourselves), though. Pain is just a part of the whole package. A package that includes all of the other aspects of our complicated, messy, lives.
I’m writing all this because pain can be incredibly isolating, for the person in pain and for their friends and family. I just want to say that it doesn’t have to be so.
We (as in all of us we: those in pain and those who aren’t) just need to work a little harder at communicating more effectively, more honestly, more consistently.
We need to not be afraid to talk about the pain and it’s associated fears, limitations, and practicalities. Just as we needn’t be afraid of talking about our hopes, our passions, our interests, our families, our work, our adventures, our hunger, our thirst.
It’s taken me 5 years to realize that it’s ok to talk about pain.
It’s part of me. But it doesn’t define me.
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