There’s a divide between chronic pain experts and their patients that rarely gets crossed. The divide centers on the issue of fear-avoidance of pain.
On one side of the divide, among chronic pain experts, fear-avoidance is one of the most well established facts about chronic pain and chronic pain-related disability. Over more than a decade, researchers and clinicians have extensively studied fear-avoidance and almost every month another study on it gets published in the professional journals. As such, it’s a well established fact among chronic pain experts. On the other side of the divide, it’s rare to find a chronic pain patient who has ever heard of it.
It’s a strange state of affairs that goes on between chronic pain providers and their patients. We know something important about chronic pain and chronic pain-related disability and our patients don’t know it. And yet, it goes unsaid. You’d think that everyone involved would want it shared. But, still, it doesn’t.
While I’ve never seen a study that could shed light on why the divide occurs, I have some thoughts about it. There are actually two reasons, but they go hand in hand.
First, we don’t share what we know about fear-avoidance because we aren’t very good at teaching patients (and maybe even the public) about what chronic pain is. Patients (and the public) commonly consider the sensation of pain as solely and only a physical sensation. As such, it’s thought that psychological aspects have very little to do with the sensation of pain itself. At most, the psychological aspects of pain are thought of as consequences of pain – that the distressed thoughts and moods, like fear, and the behaviors that go along with them are really just reactions to the physical sensation of pain. As chronic pain experts, though, we know that it isn’t true. While it requires and involves a physical sensation, to be sure, the experience of pain also inherently involves unpleasant and distressing thoughts, feelings, and behaviors. Any explanation of fear-avoidance requires this understanding of chronic pain – that it is more than simply and only a physical sensation. However, it is hard to communicate this notion. It’s difficult to teach patients to expand their understanding of chronic pain and incorporate its inherent cognitive, emotional, and behavioral components. Moreover, besides being hard to communicate, it has to be communicated well – with compassion and sensitivity -- in order for most patients to succeed in understanding the true nature of chronic pain. This point leads us to the second reason for the great divide between chronic pain experts and their patients.
Second, to be frank, there can be a little pushback from patients when it comes to explaining that chronic pain is more than simply a physical sensation and that it in fact involves psychological as well as medical aspects. Frank discussion of the inherent psychological aspects of chronic pain can tend to get inhibited because it opens up the possibility of critical judgment and stigma by others. It’s safer to insist that chronic pain and its related difficulties are solely and only physical because in our society it is acceptable if you struggle with a medical condition. It’s not acceptable to acknowledge that you’re psychologically struggling. Consequently, and understandably, patients can resist coming to understand how chronic pain is inherently both a medical and a psychological condition – what healthcare providers call a biopsychosocial condition.
This resistance reinforces any unwillingness of healthcare providers to bring up the notion of fear-avoidance because it assumes a foundational understanding that chronic pain is both a medical and a psychological condition. To convey the latter, though, as indicated, it’s hard work. To succeed in doing so, it requires a high level of skill on the part of healthcare providers – a degree of interpersonal compassion and sensitivity. It also involves a level of interpersonal skill on the part of the patient – the ability to develop a safe, trusting relationship in which the patient can be assured that no critical judgment will occur.
Fear-avoidance is therefore a sensitive issue, which challenges the skills of both chronic pain experts and patients, if we are to ever bring it up. We have to admit that providers have a hard time talking about it and patients tend to have a hard time hearing about it. So, we avoid the topic. It’s a bit ironic: we avoid discussions of fear-avoidance. The great divide in knowledge and understanding subsequently continues.
If you’re game to talk about it, though, I’m game. Let’s give it a try.
There’s significant benefit if we can pull this off. As chronic pain experts, we know that fear-avoidance is one of the most important factors that lead to chronic pain-related disability (Crombez, Vlaeyen, Heuts, & Lysens, 1999; Leeuw, et al., 2007; Vlaeyen & Linton, 2012). If you can learn about it, and acknowledge it when it occurs, then you can begin to challenge it and change it. It’s not an exaggeration to say that overcoming fear-avoidance is essential if you want to self-manage pain successfully. It’s really that important. So, let’s talk about it. Ready?
Pain is a naturally unpleasant and distressing experience. We don’t laugh or jump up and down for joy when in pain. Rather, we cry and become alarmed. Pain captures our attention and our thoughts become concerned about it. We think about what’s causing it and how to get rid of it. Emotionally, we are alarmed and distressed. These cognitive and emotional aspects to the experience motivate us to get help, stop the pain, and avoid it again in the future.
These ways of experiencing pain and reacting to it are not chosen or the result of intentional decisions. When in pain, we don’t intentionally decide to perceive it as unpleasant or distressing, and subsequently begin to cry and emotionally become alarmed. Moreover, we don’t typically choose how we are going to think about pain and how we might make sense of it. Rather, pain just is inherently emotionally distressing and alarming. As such, even though we can tend to think of it as solely a physical sensation, we cannot wholly divorce the sensation of pain from how we perceive it, cognitively and emotionally. The cognitive and emotional distress is just part and parcel of the experience of the sensation. The whole experience also involves behaviors that are indicative of being in pain – the grimacing, verbal expressions, guarding, and the like. None of these behaviors are typically thought of as chosen behaviors. Subsequently, we might say that all these cognitive, emotional, and behavioral aspects to the experience of pain are automatic or reflexive.
Let’s take an example. Consider what happens when you burn your hand on the stove. Behaviorally, you reflexively pull your hand away and guard it. Tears might come to your eyes and you might exclaim all sorts of utterances. Cognitively, your thoughts are focused on the pain and what to do about it. Emotionally, you are upset and alarmed. Your emotional distress motivates you to act. It also motivates you to be careful next time. Later, you’ll apt to be apprehensive and take steps to avoid getting burned again.
Experts in chronic pain management call this constellation of cognitive, emotional, and behavioral components to the experience of pain, “fear-avoidance.”
Fear-avoidance is all well and good in an acute injury. It’s an adaptive and helpful response. It helps us to get better and avoid future injury.
What’s good for an acute injury, however, is not always good for chronic pain. Persistent fear-avoidance in chronic pain leads to persistent emotional distress and impairments in activities. In other words, chronic fear-avoidance is one of the most important factors that lead people with chronic pain to become disabled.
If, like the alarming nature of acute pain, chronic pain remains alarming indefinitely, then the natural reaction to pain is to always try to stop it or get rid of it. Since, though, the pain is chronic, there’s not much the typical chronic pain patient can do to stop it. Of course, there are medications and various kinds of therapies, but at best these approaches only reduce pain. It can then seem like the only thing that’s left to do is to stop doing activities that make pain worse.
If work makes your pain worse, and you struggle to tolerate it, coming home distraught by the pain night after night, then it can seem reasonable to conclude that maybe you shouldn’t go to work anymore. If the pain of sitting in the bleachers at your child’s sporting event or musical performance was too excruciating the last time you went, then you might find yourself making the tough decision to stay home tonight instead. Over time, you can come to anticipate when pain is going to become too overwhelming and consequently avoid those activities too. You end up declining invitations to the extended family reunion, the weekend trip that includes the long car ride, the outing to the amusement park, or other similar activities. All these examples are examples of fear-avoidance of pain and its associated activities.
Notice that inherent in all these examples is that pain is something that’s concerning and distressing, which then leads to not doing the activities that bring on pain. For after all, if, when doing some activity, the pain wasn’t alarming, then we’d say the pain was tolerable and we’d keep doing the activity. The pain would still be there, of course, but we’d do the activity without any concern or sense of alarm about it. In the examples above, though, the pain involved in the activities is distressing and alarming and so the activities are stopped. In the short hand of pain experts, these examples involve fear-avoidance of pain and the activities associated with pain.
What it all comes down to is that, when it comes to chronic pain-related disability, the cognitive, emotional, and behavioral aspects of the experience of pain are the most important components, not the actual physical sensation. It’s the sense of alarm that is the tipping point and stops people from doing things. Of course, the sensation plays a role, but without the sense of alarm – the cognitive and emotional ways of perceiving the sensation – the sensation itself would be tolerable and there’d be no need to avoid or otherwise stop the activity.
Now, here is where patients can start to get a little uncomfortable.
Common patient reactions to the notion of fear-avoidance
When first hearing about fear-avoidance, a common reaction among patients is something like the following: “It’s not my emotional or behavioral reactions to pain that disable me, it’s the physical pain!” The sentiment involves a concern for being judged and also being a little put off. Both sentiments are understandable.
At the end of the day, though, is it accurate and is it necessary? Would the patient be better off by coming to understand the truth about fear-avoidance and then learning how to overcome it? Let’s take a close look at these issue.
As suggested above, the point of the resistance to fear-avoidance is really two-fold, but they go hand in hand. First, it is an assertion about what pain is – that pain is a physical sensation that is wholly different from any cognitive, emotional, and behavioral factors related to pain. Second, it is an assertion that if psychological aspects of the experience of pain are acknowledged, then they open up chronic pain patients to the potential shame of stigma and the critical judgments of others. The two assertions work hand in hand because insistence on the notion that pain is solely and only a physical sensation puts it into the medical category of conditions and it is typically socially acceptable to be disabled from medical problems. But, if we acknowledge that there are psychological aspects to the pain experience, then we run the risk of putting it into the psychological category of conditions, and it just isn’t acceptable to be disabled by psychological problems.
As we said, it’s a sensitive issue.
Any response to this common patient reaction requires, not only an expert understanding of what chronic pain is, but also a deep level of compassion and sensitivity in order to convey this understanding to patients, making it okay enough for them to acknowledge and learn from.
Let’s try to show how it might just be true that the psychological aspects of the experience of pain are more important than the physical sensation, especially when it comes to chronic pain-related disability.
Consider, for the moment, two patients with chronic low back pain, Mr. Smith and Ms. Jones. Let’s further suppose that they each have the same exact degenerative changes in their lumbar spine, as evidenced by recent scans. Over the last month, each of their pain has been worsening.
Mr. Smith has been told and therefore believes that the degenerative changes in his spine are inevitably progressive. He conceptualizes his condition as that his ‘discs are degenerating.’ He believes (and may have been told) that given the degenerative nature of his condition he will likely end up in a wheelchair someday. During the last month, his pain has been worsening and he takes it as evidence of his inevitably degenerating condition. This perception of his pain is alarming. Out of this resultant fear, he responds with rest and inactivity. From his perspective, it makes all the sense in the world to rest and remain inactive. Given his understanding of his pain as the result of a fragile orthopedic condition that is inevitably getting worse, he reasons that he needs to not engage in activities as a means to prevent, or at least slow down, the degenerative process in his spine. Just as you wouldn’t walk on a broken leg, rest and not doing too much seems like the best approach for his condition. He rates his pain as intolerable.
Ms. Jones has been told that she has degenerative changes in her spine, but she has also been told it is normal for a person of her age. It was explained to her that the term ‘degenerative disc disease’ is actually a misnomer and that we now know it really isn’t degenerative or a disease. We know, for instance, that most of the time degenerative changes of the spine get better, not worse, and even in those situations where they don’t get better, they almost always stay the same. It was explained to her that chronic pain is actually a complex condition and that her pain is only partly attributable to her stable degenerative changes in spine. The overall state of her nervous system, in terms of central sensitization, and external stressors, can also play a role in maintaining her chronic pain.
Ms. Jones has taken these lessons to heart and is confident that she knows what her pain is and that it is chronic and stable. She has so fully accepted it that it no longer alarms her. She knows that reasonable activities are not going to make her stable degenerative changes worse. She’s identified for herself that if she stays home when having a bad pain day she has nothing to do but focus in on how much pain she has. As a result, her response to pain is to get up and go do something. Of course, she’s reasonable about it and she paces herself when needed. Nonetheless, she sees staying active and productive as ways to cope with pain. Because she knows her degenerative condition is stable, she reasons that the increase in pain over the last month isn’t due to a worsening of her spinal condition and subsequently looks to other reasons for the pain increase. She recognizes that the increase in pain corresponds, for instance, to the last few months of poor sleep and, sometimes, outright insomnia. She knows that her poor sleep is itself due to the stress of some recent family issues -- one of her children is going through a difficult divorce and her grandson, from another one of her children, was recently diagnosed with autism. She recognizes that her increased pain is due to the stress of these family issues and the resulting insomnia. So, she sets out to take better care of herself and manage her stress better. She notes that her pain has increased but it still remains tolerable.
Mr. Smith and Ms. Jones have the same degenerative condition and, we assume, the same physical sensation. However, how they make sense of it is very different. How they feel about it is very different. How they behaviorally cope with it is very different. Mr. Smith experiences pain through the lens of it being indicative of a threatening condition that’s inevitably going to bring about severe impairments. Ms. Jones sees her pain as indicative of a benign and stable condition. She also recognizes that she has some control over how much pain she has by managing the state of her nervous system and how much stress she has. Mr. Smith sees his pain as largely out of his control. Mr. Smith’s moods are mostly fear-based. Ms. Jones is mostly confident. Mr. Smith engages in passive coping strategies of rest and inactivity. Ms. Jones engages in active coping strategies of remaining active, productive, and often getting out of the house. Mr. Smith experiences his pain as intolerable. Ms. Jones still rates her pain as tolerable, even though it has increased over the last month.
Mr. Smith, we might say, is fear-avoidant. Ms. Jones is not.
While hypothetical, the case examples show how it is possible that the psychological components to the experience of pain can make all the difference. The physical sensation, we assume, remains constant across both individuals. However, the beliefs about the sensation, the quality of the attention given to it, the mood states that occur during the sensation, and the behavioral responses to it, all have a reciprocal affect on the quality and intensity of the overall experience of pain.
In one instance, these psychological components make the pain intolerable and impairing. In the other instance, the psychological components make the pain tolerable and she refrains from becoming disabled.
A vast array of experimental and clinical research supports our hypothetical cases. Of course, a review of the biopsychosocial nature of chronic pain is beyond the scope of this blog post. I’d refer the reader, though, to any of the numerous reviews of the matter (e.g., Bushnell, Ceko, & Low, 2013; Linton, 2000). You’ll find that beliefs, particularly beliefs of the threatening nature of pain, can influence the self-rated unpleasantness and intensity of pain (Gracely, et al., 2004). It’s well established that people rate their pain as worse when they believe it’s somehow threatening to them, than if they believe it’s benign, even when the painful stimuli is held constant across both groups. You’ll find that it is well established that pain is worse when your attention is focused on it than when your attention is distracted (Bantick, et al., 2002; Eccleston & Crombez, 1999). It’s well established that people with negative mood states will have higher pain ratings than people with more positive mood states, again, even when the painful stimuli is held constant (Tang, et al., 2008; Villemure & Bushnell, 2009; Wiech & Tracey, 2009; Wiech, Ploner, & Tracey, 2008). It’s also well established that people who engage in passive coping strategies, such as rest and inactivity, tend to have higher rates of pain and disability than those who don’t (Jensen, Turner, Romano, & Karoly, 1991; Samwel, Evers, Crul, & Kraaimaat, 2006).
In all, there’s just no getting around the fact that the nature of chronic pain is such that it has both physical and psychological aspects inherent to it. The notion that pain is solely a physical sensation that can be wholly divorced from cognitions, emotions, and behaviors is just not true. In fact, like in the case of fear-avoidance, the psychological components can make all the difference in what makes pain tolerable or not.
As chronic pain experts, we need to find a way to routinely educate patients and the public about the true biopsychosocial nature of chronic pain. We also need to be able to do it well – with compassion and sensitivity. We need to understand why patients might tend to resist what we take as established truth. It’s because of stigma. It’s because in this day and age it is still not socially acceptable to see chronic pain as a psychological condition, even if it is only in part psychological. We need to be able to develop trusting relationships where the truth can be told and discussed, and patients remain accepted and respected.
Patients too need to practice having the ego strength to acknowledge this truth and do so without shame. You don’t have to buy relief from stigma by insisting on something that’s not true – the belief that chronic pain is solely and only a physical sensation that is separable from any psychological factors. The challenge is to practice remaining confident that you are doing nothing that’s worthy of criticism. We might rightfully judge and criticize someone who lies, cheats, or steals. But, we don’t judge or criticize those who struggle to cope with any of life’s psychological problems, chronic pain included.
Indeed, if we all could overcome stigma, then healthcare providers could openly talk about the well established psychological aspects of chronic pain, such as fear-avoidance, and our patients could openly hear it. Together, we could make significant progress in helping people to learn to live well despite having chronic pain. In so doing, we could bridge the divide that has prevented us from acknowledging what we all know is true.
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Author: Murray J. McAllister, PsyD
Date of last modification: 9-9-2013
About the author: Dr. McAllister is the executive director and founder of the Institute for Chronic Pain (ICP). The ICP is an educational and public policy think tank. Our mission is to lead the field in making pain management more empirically supported. Additionally, the ICP provides scientifically accurate information on chronic pain that is approachable to patients and their families. Dr. McAllister is also the clinical director of pain services for Courage Kenny Rehabilitation Institute (CKRI), part of Allina Health, in Minneapolis, MN. Among other services, CKRI provides chronic pain rehabilitation services on a residential and outpatient basis.