Available Oct 1st everywhere you buy your books!The Institute has provided those living with chronic pain, their family members and their providers evidence-based digestible information about chronic pain for over ten years. We are pleased to be publishing How to Have Hope When There Is No Cure: A Comprehensive Guide to Chronic Pain Rehabilitation. This groundbreaking book is the culmination of decades of work by our late founder, Dr. Murray J McAllister, PsyD, and serves as the pinnacle of our mission; to make pain management more effective by changing the culture of how chronic pain is treated. With the publication of this book, we will no longer be adding new content to our website or social channels, but current content will remain available.
Murray J. McAllister, PsyD
Murray J. McAllister, PsyD, is a pain psychologist and consults to health systems on improving pain. He is the editor and founder of the Institute for Chronic Pain (ICP). The ICP is an educational and public policy think tank. In its mission is to lead the field in making pain management more empirically supported, the ICP provides academic quality information on chronic pain that is approachable to patients and their families.
The other day I heard someone make the claim that psychological interventions for persistent, or chronic, pain are at best modestly effective. She went on to rhetorically ask why the field should promote such therapies when the empirical support for them is so unimpressive?
I’ve heard such statements countless times before.
It would be an important point if the field of pain management was filled with effective therapies. Pain management has many offerings in terms of therapies and procedures and, were it the case that these offerings were highly effective, it would make little sense to recommend behavioral therapies that are only modestly effective.
But it is not the case that there are many, highly effective therapies and procedures for the management of persistent pain. With one possible exception, there are actually no highly effective therapies for chronic pain.
It’s common to believe that treatments recommended and performed by healthcare providers are effective. It’s generally understood, for instance, that governmental institutions hold medications to a certain level of scientific scrutiny and, as such, medications have been shown to be effective before healthcare providers are allowed to prescribe them to their patients. Most people think the same is true for procedures that are performed in healthcare. It’s common, for instance, for people to assume that surgeries have undergone governmental-level scientific scrutiny and have been shown to be effective before they are allowed to be performed on patients.
Over the last few years, I have argued that we need to rethink the nature of opioid use disorder in the population of people who take opioids as prescribed for moderate-to-severe persistent pain. I’ve done so in various formats, including in presentations as well as here at the Institute for Chronic Pain, in both web pages (Should the Definition of Opioid Addiction Change? and Opioid Dependency & the Intolerability of Pain) and blog posts (The Central Dilemma in the Opioid Management Debate and Dreaded or Embraced? Opioid Tapering in Chronic Pain Management).
I do so because I think that the fields of both pain management and addiction are overly focused on loss of control as the primary indicator of when a person on long-term opioids for pain management crosses the line into the problematic state of an opioid use disorder (OUD). The argument these fields tend to use goes something like the following:
People with moderate-to-severe, persistent pain often come to a pain rehabilitation program because they want more out of life. It is not so much that they are looking for outright pain relief, since they’ve had pain for so long they know it isn't going away altogether. What they are looking for instead is to be able to get back into life and do activities that they no longer do.
Last year, I served on a committee looking into reasons for resistance by the healthcare community to adopt opioid prescribing guidelines. At first blush, this reluctance was perplexing.
“Thank you. I’m so grateful to all of you. You’ve given me my life back…
but why did it take so long for me to be referred to this program?”
This series of statements, along with the concluding question, is a daily affair in chronic pain rehabilitation clinics and programs across the world. Moreover, this gratitude and unsettled curiosity are commonly expressed with a new-found sense of empowerment, an empowerment that comes only from tapering opioids and coming to acquire the abilities to successfully self-manage persistent, severe pain.
These sentiments are typically expressed by those who previously hadn’t believed that self-managing pain without opioids was possible.
Chronic use of opioids is often associated with an unwavering belief that severe pain is simply intolerable without opioids. Patients on long-term opioids may initially resist coming to a clinic that provides care involving opioid tapers. Once havng started to receive such care, they may become angry with their team of providers when encouraged to taper. They often lack confidence that they can do it. Their healthcare providers, however, support them by showing them how to do it. Just as importantly, their healthcare providers believe in them and express it to them. With time, persistence of effort, and a willingness to learn, patients in these programs and clinics find themselves in a position that they hadn’t previously thought was possible. Having gone through a series of therapies, including a slow and safe opioid taper, they are doing well. Indeed, many find themselves feeling better than when they had been on opioids, despite their earlier perceptions of opioids as literally a lifeline. They can hardly believe it, but here they are, doing well and without opioids. In this place of wonder, gratitude and empowerment, for having taken back control of their lives, it inevitably dawns on them to ask, “Why didn’t anyone refer me to this clinic before?” or “Why did it take so long? I was on opioids for years and no one ever told me that there were programs like this!”
Such experiences of empowerment are the result of a number of pain rehabilitation therapies, but an essential one in the overall mix of therapies is a slow and safe opioid taper. Opioid tapering, in other words, is an exposure-based therapy for pain, making what was once intolerable into something tolerable – in fact making it quite livable.
What is an exposure-based therapy?
An exposure-based therapy is a treatment in which patients acquire skills that allow them to gain incremental control over their nervous system through a process of gradually exposing themselves to stimuli that we naturally and reflexively tend to avoid. In so doing, patients repetitively practice responding to the stimuli differently, so as over time the stimuli is no longer avoided. In this process, patients come to change their experience of these stimuli from something that is perceived as intolerable to something that is tolerable. With more time and effort, they subsequently gain mastery over the stimuli that had previously been perceived as unbearable and which had elicited a reflexive reaction of avoidance.
Let’s take an example. When you think about it, there is nothing natural about riding a bicycle. You sit on a small seat attached to a frame on wheels that can roll from slow to fast, at times much faster than you can walk or run. While on a bike, you can also hurt yourself, sometimes just a little, but sometimes the injuries can be quite severe. When young and learning to ride a bike, despite any desire to be like your older siblings or friends, we have a natural and at times quite reflexive reaction to stop trying. This reflexive reaction is subsequently reinforced with failure to successfully ride and what occasionally accompanies such failures -- injury. In other words, learning to ride a bike is hard. It isn’t natural and it can sometimes hurt when we fall while learning. Sometimes, it can hurt a lot. We have a tendency to avoid such experiences. It is not natural to continue to go back to an activity that we haven’t inherently evolved to do and which involves risk of harm and pain.
Nonetheless, with coaching and encouragement from a more experienced rider, we can and do override these reflexive responses to avoid the activity and instead go back to it, and practice the skills necessary to ride a bike. With time, persistence and effort, we learn to ride a bike.
Now, notice what happens to our experience of bike riding through the beginning, middle, and end of this process of learning. At first, the prospect of bike riding is mixed. You want to be like the others in the neighborhood who seem to be having fun on their bikes, while at the same time it is also scary. You’re not so sure about it. One part of you (such as the frontal lobe of your brain) wants to achieve that skill which others in the neighborhood have and you want to set out to learn how to do it. Another part of you (such as the limbic system of your brain) is reflexively not so sure about it and wants to put it off for another day. This internal conflict is called ambivalence. You want to, but you don’t want to, at the same time.
If the latter part of your ambivalence gets the upper hand, and you keep avoiding it, then bike riding remains a fraught experience. The internal alarm bells go off whenever you entertain getting on the bike and recalling those times when you actually or nearly fell and hurt yourself. With the alarms sounding, you avoid the bike altogether and your perceptions of the prospect of learning to ride a bike is that it is just too threatening. It is best avoided altogether.
If, however, the former side of your ambivalence gets the upper hand and you keep intentionally returning to practice riding the bike, this thing that you naturally and reflexively tend to avoid comes to be perceived as increasingly tolerable as you slowly practice and acquire the abilities to ride the bike. In short, your experience of bike riding goes from a naturally alarming and threatening experience that you reflexively tend to avoid to an experience of empowerment and mastery.
The same stimulus – bike riding – can come to involve two very different perceptions. When it comes to stimuli to which we as humans have inherent, self-protective reactions, we can set out in a systematic way to practice over-riding these reflexive reactions and acquire a set of skills that changes the overall experience. We do so by repetitively exposing ourselves to an inherently threatening experience to which we reflexively avoid and instead intentionally practice a different set of responses. In the process, our perception of these stimuli changes from something that is intolerable to something that is tolerable and eventually something that is quite livable. The stimuli don’t change, but our nervous system’s inherent self-protective reactions do and thus our perceptions of the stimuli do as well.
This systematic process, along with the supportive coaching on how to do it, is called in psychology an exposure-based therapy.
Changing our nervous systems
We don’t tend to think of learning to ride a bike as an exercise in changing our nervous systems. Usually, we think of it as an exercise of practicing balance and coordination, as well as an exercise of effort and persistence. We typically have coaching and encouragement from a more experienced bike rider, one who has mastered the skills necessary to ride.
It is, of course, all those things, but it is also something else. Something important happens in our brain when we gain the skills necessary to ride a bike. In fact, we might even consider that what happens in our brain is the development of a skill unto itself. It’s the skill of gaining mastery over our inherent, reflexive, self-protective reactions to stimuli that are associated with harm.
To fully understand this statement, we need a quick lesson in neuropsychology and neuroanatomy.
In the presence of something dangerous or harmful, we have a part of our brains that sounds the alarm and reacts in ways that protects us. This part of our brain is called the limbic system.
The limbic system lies on the inside of our brain at the top of the brain stem, which itself comes up from the spinal cord. It is sometimes called the mammalian brain, because all mammals have a limbic system that protects us from harm.
When threatened, the limbic system in the brain sounds an alarm. This alarm is made of many reflexive reactions. Cognitively, we become focused on the threat and immediately engage in problem-solving, which usually involves getting away from the threat. Emotionally, we are alarmed – agitated in terms of fear and anger. Hormonally, the limbic system releases danger chemicals that amp us up with energy and tells the immune system to release inflammation that will protect us from bodily harm. Behaviorally, we react in self-protective ways, which, again, usually involves avoiding the threat; but, if we must, it can also involve fighting back against it. Socially, we tend to seek support and help from others.
All of these reactions are not the result of intentional decision making. We don’t, for example, react to threat by going, “OK, wait a minute, let me think about this and weigh my options here… so that I make the best decision possible.” Rather, it is much more automatic. When threatened, we fly into action without making an intentional decision. Like a knee jerk when tapped in a particular spot, they are all reflexive reactions.
This set of reactions is called fight-or-flight, or sometimes, fight-flight-tend-and-befriend.
It helps us to survive threats and go on to live another day. Our mammalian nervous system evolved a limbic system – this part of our brain – because it helps us to effectively respond to threats and survive. It came in handy when there were saber-toothed tigers roaming the neighborhood.
We don’t need, however, something on the order of a saber-toothed tiger for our limbic systems to kick into gear. In fact, it can happen all throughout our present day lives. It can happen with the little things, the big things, and everything in between. We can think of countless examples. We can get amped up when our boss makes a comment that we aren't sure how to take. We can get even more amped up when we hear bad news about a loved one, when we drive on icy roads or when we look down from a tall height. If you have ever flown in a plane, consider what it was like the first time. Maybe just ever so slightly, or maybe to some greater degree, you felt the pull of your limbic system kicking in – heart rate going up, palms getting sweaty, fear rising, feeling pulled to get off the plane and avoid it.
Again, these reactions are not intentionally chosen experiences. Rather, they just start to happen. Our mammalian brain – our limbic system – takes over and starts to sound the alarm in reaction to threat.
Despite these reflexive, unchosen reactions of the limbic system, we can come to unlearn them if it matters enough to us to put in the time and effort to practice over-riding them.
In addition to a limbic system, our brains also have a frontal lobe. The frontal lobe lies behind our forehead and is the seat of higher level thinking and learning. It allows us to engage in self-observation and consideration of options. In other words, we can think about how we should act, consider our choices, and actually make intentional choices. So, if it mattered to us enough (say, for example, you took a job that involved travel and you had to get over your fear of flying) we can use the frontal lobe part of the brain to practice observing the reflexive reactions of the limbic system, catching ourselves when doing them, and practice intentionally engaging in different chosen responses, rather than just automatically reacting. We might also receive coaching in this process, pointers, and encouragement. With time, effort, and practice, we can come to routinely choose responses that are differnt from what the limbic system automatically offers up. As a result, our perception of the original threatening stimuli changes to something more benign. Through an exposure-based therapy, what was once intolerable becomes tolerable and then changes further to something quite livable.
Review of the neuromatrix
Along with other parts of the nervous system, the frontal lobe and limbic system are involved in the production of pain in the body. By changing them in an exposure-based therapy, we can come to interrupt the production of pain and thereby change pain levels from intolerably severe to tolerably moderate and then all the way to mildly quite livable.
To understand how, we need to dive deeper into neuroanatomy and how pain is produced in the body.
Suppose you break your ankle while accidentally stepping into a hole. A broken ankle is usually quite painful. Its pain is the product of a complicated back-and-forth process of communication in the nervous system.
First, sensory nerves in and around the ankle sense the bone fracture and send electrical-chemical signals up the nerves of the leg to the spinal cord, and through the spinal cord to the brain. Once those signals reach the brain, many parts of the brain become activated. Roughly speaking, we can say that these parts fall into three broad areas: the somatosensory cortex, the limbic system, and the frontal lobe.
The somatosensory cortex produces the quality of the sensation and where it will be felt in the body. In the case of your broken ankle, you’d likely feel a throbbing, aching sensation of pain in your left ankle. Despite it being felt in your ankle, the experience of these sensations is produced in the somatosensory cortex of your brain, in communication with nerves in your body.
Pain is also an inherently alarming or distressing sensation. Unlike tickles, tingling, and itches, which are also sensations, pain makes us feel distressed. We do not giggle and get goosey with pain, such as we do with tickles. Rather, we become alarmed, guarded and self-protective of the painful part. We also reflexively seek the help of others. All of this is to say that when the somatosensory cortex produces a sensation of pain, the limbic system also kicks into gear. We go into fight-flight-tend-or-befriend.
After all, pain is our inherent danger signal. It is alerting us to a problem in our body – in this case, an ankle bone fracture. Thus, it would make sense that our built-in alarm system that protects us from danger would also be activated.
As we saw above, a number of things happen when our limbic system kicks into gear. Hormones are released. One of these hormones is cortisol, and cortisol tells our immune system to produce an inflammatory response. Inflammation floods the ankle, making it swollen. It is there to repair damage (and/or fight infection if, for example, it was a puncture wound rather than an ankle fracture). Inflammation also, however, irritates nerves, making them quite sensitive to normal stimuli, like touch or simple movement. It is why it hurts so much, when you seek help in the emergency room, and the healthcare provider examines the broken ankle and lightly palpates it, asking, “does this hurt?” The light touch does indeed hurt. It’s because the inflamed, and subsequently irritated, nerves have become sensitive and the whole nervous system in its two-way communication is producing pain.
The frontal lobe, our center of higher level thinking, such as self-observation, learning and intentionality, is also involved in the production of pain. Over the course of a lifetime of experiences, we come to learn what’s serious and what’s not, what we should seek help for and what we can do on our own. Consider how a young toddler looks to his mother when looking up from a scraped knee and beginning to have an alarming sensation in the knee; consider now how you react in a similar situation given that you are an adult. The reactions and indeed the pain levels tend to be quite different. In other words, through the normal course of development, we come to know when to follow our limbic system’s alarm bells and when to override them; over the course of this timeframe, we actually have already become quite good at over-riding our limbic systems in these situations. In the case of the broken ankle, however, we’ll typically perceive it as serious enough to get help, and engage in other self-protective behaviors.
If we put someone with a broken ankle into an MRI tube and scanned their brain, various parts of the brain would light up, all of which fall into these three broad areas of your brain – the somatosensory cortex, the limbic system, and the frontal lobe. Their involvement in the production of pain has been dubbed the neuromatrix of pain. The overall product of this neuromatrix is a tactile perception of pain.
The neuromatrix works with the spinal cord and the nerves in the body in a two-way communication process – upwards from the site of injury and downwards to the site of injury. In this way, in our example, to have pain in the ankle, we need both the ankle bone fracture and the nervous system in this two-way communication process, as described above.
To reduce pain in these kinds of cases, we do two things. One, we wait for the ankle bone fracture to be healed by the inflammation and as a result the brain will call off the alarms and stop calling for inflammation, and subsequently the nervous system will come back to normal. Two, in the meantime, we do therapies to calm the nervous system.
What does this have to do with pain and opioids?
Most – almost all – therapies for pain target the nervous system, particularly the brain, in order to reduce pain. Anti-inflammatory medications, like ibuprofen or steroids (such as what is given in an epidural steroid injection), reduce inflammation, which itself irritates nerves as described above, lowering the threshold of what will cause pain, like light touch or simple movements. When inflammation is reduced, through the use of such medications, the nerves temporarily come back to a normal threshold and normal things like touch or movement no longer hurt as much. In this indirect manner, the medications calm the nervous system. Antidepressants, like duloxetine, antiepileptics, like gabapentin and pregabalin, and muscle relaxants, like baclofen or tizanidine, calm the nervous system more directly. They work on the brain to create downstream effects on pain. Opioids too work on the brain. MRI studies show that opioids work throughout the neuromatrix that is responsible for producing pain, but particularly in the somatosensory cortex and the limbic system. Interestingly, the limbic system seems most sensitive to opioids1, 2 – calming the emotionally alarming aspects of pain (“Opioid pain medication takes the edge off…” or “I still have pain, it just doesn’t bother me as much anymore…”).
In fact, they are systematic ways of learning to incrementally gain greater control over your nervous system to reduce its reactivity and thus change levels of pain. The target for all these behavioral interventions are the limbic system and frontal lobe.3 They reduce pain by accessing the frontal lobe to learn how to reduce limbic system activation that typically accompanies the sensation of pain. Pain levels subsequently reduce from severe to mild.
Let’s explain the way to do it.
Acquiring the abilities to successfully self-manage pain
Suppose it became important to you to become a good public speaker. Maybe you took a job that required it, but you’ve never done public speaking before and in fact you would have avoided it altogether had the possibility arisen earlier in life. The mere thought of speaking in front of large audiences makes you nervous and queasy. If, by some force of magic, you found yourself in front of hundreds of people with a speech script in your hands, the experience would be unbearable. It would be pure fight-or-flight. However, it now has become important to you to learn how to do it and so you sign up for a public speaking course. In the course, you start to practice giving speeches in front of the mirror, but in time you start to have one or two people listening. With practice and effort over time, you speak in front of larger and larger audiences. You get supportive coaching and assurances along the way to keep you motivated and learning. In this gradual manner, you eventually get up in front of hundreds of people. You do it a number of times and it becomes less and less scary. It goes from an unbearable experience to one that is bearable. With such repetitive practice, you might imagine that you could get really good at public speaking, and even one day come to enjoy it.
In this systematic training, you are essentially targeting your limbic system and training it how to refrain from going into fight-or-flight in the presence of the threatening stimuli of being in front of hundreds of people, engaging them in a speech. You do it through learning, intentional self-observation and practice – all of which are largely housed in the frontal lobe.
By gaining mastery over your limbic system's automatic responses, the same stimuli -- speeches in front of hundreds of people -- is no longer perceived as an unbearable experience, but rather becomes perceived as bearable, perhaps, even quite routine.
Now, of course, you could forego the training course, and target your limbic system with certain types of medications. However, they tend to have cognitive side effects, and you might not be as sharp as you want to be when giving a speech. In these cognitively dulling side effects, you might also not care as much, but giving speeches is for your job and so you want to stay motivated to care and be attentive to the details. Or, maybe it is against your values to take medications, many of which are addictive, for the sole purpose of calming your nervous system, and you’d end up feeling bad about yourself if you had to rely on them. For whatever reason, you make an intentional decision to learn how to incrementally gain control of your nervous system without having to rely on medications and so you sign up for the course.
Similarly, as we have seen, pain is an inherently alarming sensation that we reflexively avoid. It is produced in the neuromatrix of the nervous system involving, among other parts, the limbic system. The limbic system is activated, going into fight-or-flight, when the somatosensory cortex produces a sensation that the frontal lobe has learned to recognize over the course of a lifetime as pain.
Now, we can avoid this experience by taking medications that reduce the activation of the limbic system, among other parts of the nervous system. It is perfectly acceptable to take such medications. If, however, you are tired of the side effects; if, however, you don’t feel good about yourself for having to rely on them; if, however, you are tired of having to defend yourself from others’ judgments of you for taking them; if, however, there’s too much conflict in your family because you believe the medications are absolutely and obviously necessary to manage pain but others don’t seem to believe you; or if, for whatever reason, you decide that you want to be able to self-manage pain without their use, then… you also have the option to pursue a systematic training course on how to do what the medications do for you. You can learn, with supportive coaching and practice, to incrementally gain control over your limbic system when it becomes reflexively activated in the presence of a sensation we call pain.
You do this in either cognitive-behavioral therapy (CBT), pain neuroscience education, or participation in a chronic pain rehabilitation program, in combination with a slow and safe taper of opioids. You have a team of supportive and encouraging providers consisting of at least a prescribing provider, a pain psychologist engaging you in CBT and a physical therapist focusing on mild aerobic exercises and pain neuroscience education. You learn about your nervous system and how it produces pain in the body. You learn about the differences in acute pain, in which it is good and adaptable when the limbic system activates into fight-or-flight, and chronic pain, in which it is safe to calm the nervous system down and reduce the fight-or-flight response. You also learn and practice ways to calm the nervous system down through meditation, mindfulness, yoga or tai chi. From your providers, you also receive supportive coaching on changing your reflexive reactions to pain. In these coaching relationships, you practice staying grounded and active in the presence of pain, rather than alarmed and avoidant of both pain and activities associated with pain. You subsequently come to cope better with pain. With all these changes, you come to have less pain. It goes from what was once a severe and intolerable experience to a mild and tolerable experience. Indeed, it becomes quite livable.
In other words, what you are targeting is your limbic system and training it to refrain from going into fight-or-flight in the presence of a sensation that the somatosensory cortex is producing. The conduit for this training is your frontal lobe, which is capable of higher ordered thinking, self-observation, and the making of intentional decisions. Each time, for instance, you practice observing your reactions to pain, making an intentional decision to focus on staying grounded in the knowledge that daily activities are safe to do, and redirecting your attention onto those other activities, you are using parts of your frontal lobe to reassure your limbic system that it doesn’t have to sound the alarm in the presence of a sensation. You can have persistent, or chronic, pain and it is safe for you to stay active. You practice stepping out of the automatic, or reflexive, reactions of your limbic system, and mindfully choosing your responses from the higher ordered thinking of your frontal lobe.
With time, effort and practice, you get better and better at it. It becomes more and more familiar. Your nervous system changes as a result. The variables of the neuromatrix, which produces pain, change. Your somatosensory cortex may continue for the time to produce a sensation, but the limbic system is less activated, making the sensation more tolerable, and the frontal lobe is learning that the chronic sensation is safe to ignore with certain activities of daily life. In this manner, the experience of pain goes from what was once an intolerable experience to a tolerable one and then progresses to become a quite livable one.
Exposure-based therapy of a slow, safe taper
To practice these approaches and subsequently become highly trained in them, you have to have pain. You have to practice with the actual lived experience of pain. This prospect involves intentional decisions to become more active and, if taking opioids, pursue a slow, safe taper.
Now, again, the use of opioids is a legitimate way to respond to pain. If, however, for whatever reason, you want to acquire the abilities to successfully self-manage pain, then you’ll need to consider the opportunity of a slow, safe taper with the support of your prescribing provider and the rest of your treatment team. (Please note any decision to change medications should be taken only as a result of careful consideration and consent between both you and your prescribing provider, along with the support of the rest of your treatment team.)
There are systematic ways, like training courses, to learn how to do it. They are informative, supportive and encouraging. Some of them, such as pain rehabilitation programs, are done in a group format whereby you progress within a small cohort of people just like you – folks with severe, and often disabling, chronic pain. Moreover, pending any rare, life-threatening dangers, such as a severe allergic reaction or respiratory depression, the taper is slow and safe, at a rate that you and your prescribing provider mutually agree upon in respectful on-going discussions.
People who make the decision to pursue these therapies and learn to successfully self-manage severe chronic pain without the use of opioid medications often describe it as one of the most empowering experiences of their lives. They faced down their pain and learned to gain mastery over it.
Where you find these therapies are in chronic pain rehabilitation clinics and programs. It is important to note, here, that such programs and clinics constitute a specialty within pain management. Many providers who have spent their careers expertly prescribing long-term opioids, whether at the primary care office or long-term opioid management clinics, often do not have the expertise to provide these therapies. Commonly, when they do pursue a taper, it is often too fast and without the supportive therapies that substitute for the opioids, or when their patients show signs of addiction. Surgeons too often have a high level of expertise for surgery, but not for providing pain rehabilitation involving slow and safe tapers. So, typically, where you find providers with this kind of expertise in pain management is in pain rehabilitation clinics and programs. They show patients how to successfully self-manage pain without opioids. Their patients are not addicted to opioids, but they do tend to have severe, chronic, and often disabling, pain.
Few people with persistent pain come to the prospect of tapering opioids with gusto and enthusiasm. Rather, they come with at least hesitancy if not outright fear and trepidation. After all, for many, long-term opioids for severe chronic pain have been their lifeline to a semblance of normalcy. Alternatively, the prospect of a life without opioids seems like a life of intolerable pain and suffering.
As such, a common request at this point in the conversation with patients tends to be something like: “Can’t you show me how to self-manage pain first, and then I’ll start the taper?” It’s an understandable question.
It is in fact true that pain rehabilitation therapies often have patients start to learn and practice a number of skill sets prior to beginning a taper. Much can be learned about how to understand pain, change the perspective on how to perceive pain, and skills that begin to calm, or downregulate, the reactive nervous system. These changes require practice and thus time. So, again, unless something life threatening is going on, there usually is no rush towards a taper.
These skills are important and essential to learning how to self-manage pain. They are also, however, insufficient. It would be like learning how to play a sport without ever actually playing your first game. At some point, you have to get on the pitch or field or court and face your competitor.
Thus, learning to successfully self-manage pain also requires practice in real life situations involving pain. Even this next step may or may not involve reducing opioids. It may just involve a commitment to increasing your activity levels or doing activities that you have long since avoided. Ideally, these situations involve goals that you set for yourself. With the gentle encouragement from the treatment team, it typically makes for the best outcomes when you make your own decision about how to challenge the status quo and thus move forward.
Despite involving no reduction in opioids, these commitments to change and practice, along with the encouraging coaching from the treatment team, are the initial steps of an exposure-based therapy when it comes to pain management. Patients make intentional decisions to engage in an activity associated with pain and then set about practicing skill sets to change their perspective on pain and reduce nervous system reactivity all at the same time. Notice, while no opioid reduction occurs, these steps also don’t involve taking extra opioid pain medications or taking medications early in order to pre-medicate the activities. They involve only taking one's normal dosing schedule.
In this way, patients are coming face-to-face with pain while practicing skills sets that change their nervous systems’ production of pain.
If the goal is to reduce opioids, it is at this point that the next step would be to take an initial dose reduction. The amount and timing is a mutual decision between the patient and the prescribing provider, with the support of the rest of the treatment team. Again, taking ownership of the decision to make a therapeutic change is an important factor in its overall outcome.
So, you make the decision that it is time to get on the bike and practice riding.
Despite the understandable fears associated with making such a decision, it is also important to try and take on the perspective that it is an opportunity to let go of burdens that you’ve carried since beginning to use long-term opioids for pain. These burdens are sometimes not altogether noticeable until you’ve started the process of letting go of the medications. It might just be that it has been so long that they have become overly familiar to you and so you have gotten used to it. It may also be because there is oftentimes an underlying shame that accompanies taking opioids that is hard to admit and so it is easy to keep it out of everyday awareness. However you might manifest them, the burdens are there nonetheless and taking steps to acquire the abilities to self-manage severe chronic pain without the use of opioids is truly an opportunity.
It is an opportunity to let go of the worries about what other people think, including your prescribing provider. It is an opportunity to once again be confident that your healthcare providers believe you. It is an opportunity to not have to submit yourself to urine screens. It is an opportunity to let go of the worry and sense of shame you feel whenever you have to see a new healthcare provider, such as in the emergency room. You will no longer be guilty until proven innocent in such situations. It is an opportunity to no longer worry about what if you lose your medications while away on a trip or vacation. It is an opportunity to no longer be so tied to your prescribing provider and the healthcare system. All of this is to say, it is an opportunity, if indeed the word can be said, to let go of the dependency that has shaped your life since beginning to take long-term opioids for pain.
Now, we aren’t talking about dependency in the sense of addiction. What’s described above, though, are forms of dependency. They are dependency in the sense of having become reliant on opioids despite having to give up important things about yourself. To achieve a degree of pain relief, you have given up a sense of freedom to go wherever you want or a sense of being care-free about what others think of you or a sense of confidence when meeting with healthcare providers. In other words, your self-esteem and sense of confidence about being in the world has taken a hit. Instead, you have bought pain relief at the cost of fear of what others think of you, anger and a sense of injustice when being judged, and, yes, an underlying sense of shame about being dependent on a medication and the prescribing providers who prescribe it.
Just think about this: when people participate in therapies within a chronic pain rehabilitation clinic or program, and successfully acquire the abilities to self-manage severe pain without opioids, they are commonly so grateful they begin to weep. It is a liberating experience. It is an empowering experience. And, as said above in the introduction to his article, they are just as often also upset that it took so long for anyone in the healthcare system to refer them to the clinic or program that helped them to achieve these results.
This kind of thing happens everyday in pain rehabilitation clinics and programs across the world. People acquire the abilities to successfully self-manage severe, often disabling, pain without the use of opioids.
They do so by learning and committing to many pain rehabilitation therapies, while also committing to a slow and safe taper of opioid medication use.
Opioid tapering as an exposure-based therapy
A slow and safe taper is one in which patients and their prescribing provider agree on a schedule of incremental dose reductions. The rate of these reductions is the result of a mutual decision, informed by on-going feedback between the patient, the prescribing provider and the rest of the treatment team. The focus is on safety and success, not speed.
With each successive reduction in the use of opioids, patients practice the therapies that downregulate their reactive nervous system. In other words, they are doing themselves what the medication does for them. As described above, opioid medications work on the brain, particularly the limbic system part of the brain. The limbic system is home to the sense of alarm that accompanies the sensation we know as pain. Pain rehabilitation therapies also target the limbic system and calm it down. It takes commitment and repetitive practice. These therapies don’t work as fast as taking a pill. Over time, however, the nervous system downregulates, or becomes less and less reactive. As a result, the nervous system is no longer in such a hair-trigger-like state, producing pain with simple movements like sitting or standing or bending over. This progress leads to normal activities becoming less and less painful. As a further result, another dose reduction can occur and the process continues.
In this process, you start to regain your confidence. You see the progress and know that you are bringing it about. You take ownership of it and know that you can keep it up. You take assurance that it is okay to go safe and slow. Most pain rehabilitation providers agree that it is better to go slow and successful than fast and unsuccessful when it comes to opioid tapering. As such, you come to see that it really can be done. Subsequently, motivation continues to mount and fear of letting go of the medications lessens. You are taking back control.
This process of both downregulating the nervous system and tapering opioids changes the perspective on how pain is perceived. In the chronically avoided state that comes with long-term opioid management, pain is, almost inevitably, an intolerable experience. It is dreaded. It is seen as insurmountably difficult. Excruciating, it might be said. However, pain rehabilitation therapies, coupled with a slow and safe taper, begin to challenge this state of affairs. You commit to doing the pain rehabilitation therapies that you know are doing what the medication does for you, and so you know that you are now substituting them for the medication use. With each successive dose reduction, you come face-to-face with pain, but also come to see that you can do it, as long as you are doing your therapies. Confidence builds and motivation to continue mounts. With supportive coaching from your treatment team, and with persistence and practice over time, your abilities and skills to self-manage pain take over and you no longer see the medications as a necessary lifeline. They start to become a hindrance to normalcy. This process continues however long you want it to continue. Many people in pain rehabilitation clinics and programs continue all the way to the end and become successful at self-managing severe pain without opioids.
They no longer dread a life without opioids. They are grateful for it.
People achieve these remarkable results in pain rehabilitation clinics and programs. With supportive coaching from their treatment team, they engage in pain rehabilitation therapies, but they also pursue an exposure-based therapy, which is usually known as a slow and safe taper of opioid medications.
1. Murray, K., Yezhe, L., Makary, M. M., Wang, P. G., & Geha, P. (2021). Brain structure and function of chronic low back pain patients on opioid analgesic treatment: A preliminary study. Molecular Pain, 17, 1-10. doi: 10.1177/1744806921990938
2. Lee, M., Wanigasekera, V., & Tracey, I. (2014). Imaging opioid analgesia in the human brain and its potential relevance for understanding opioid use in chronic pain. Neuropharmacology, 84, 123-130. doi: 10.1016/j.neuropharm.2013.06.035
3. Gagnon, C. M., Scholton, P., Atchison, J., Jabakhanji, R., Wakaizumi, K., & Baliki, M. (2020). Structural MRI analysis of chronic pain patients following interdisciplinary treatment shows changes in brain volume and opiate-dependent reorganization of the amygdala and hippocampus. Pain Medicine, 21(11), 2765-2766. doi: 10.1093/pm/pnaa129
Date of publication: June 8, 2022
Date of last modification: June 15, 2022
The Institute for Chronic Pain (ICP) recently published a content piece on the roles that shame play in the experience of pain, particularly in persistent pain. It’s an under-reported topic in the field of pain management. In fact, we don’t tend to talk about it at all.
Shame is an emotion that we don’t talk about much in pain management. We should, though, because people with persistent pain commonly experience shame in the interactions that they have with healthcare providers, friends and family.
What is shame?
Shame is an emotional experience that we have when perceiving ourselves as failing to maintain a social norm. It involves a critical judgment of not just what we did in failing to maintain the social expectation, but of ourselves as a person. In this way, shame has a close connection to self-esteem.
To understand shame better, it is helpful to differentiate shame from guilt. Shame and guilt are often thought of as going hand in hand, but they are different. Guilt is the emotion that we have when we come to see that we’ve done something bad, whereas shame is the emotion we have when we come to perceive ourselves as a bad person.
Suppose I cheat in a game. My actions in the game fall outside the social norm or expectation that we all play by the rules. As a result, I come to experience guilt. I have an unpleasant feeling about the unfair advantage I took, because I rightly see that my actions were bad.
Suppose further that I subsequently also come to see myself as a bad person and have an unpleasant feeling. This feeling is shame.
- Guilt - when what you did was bad
- Shame - when you are bad
The common admonitions related to guilt and shame illustrate the difference clearly:
- Guilt - “You should feel guilty about what you’ve done!”
- Shame - “You should be ashamed of yourself!”
Here is where we can see how shame has a more direct relationship to self-esteem than guilt has. People with a healthy self-esteem can experience guilt, admit wrong-doing, and move on. Their sense of guilt might remain, but only as a memory to guide their future actions towards more appropriate behavior. In all, they may feel guilt, but they know that they are still a good person. Shame, however, cuts to the core of who you are as a person. With shame, it’s not just that your actions are bad, but you are bad. You are a bad person. Understandably, the experience of shame lowers self-esteem. In turn, subsequent experiences of shame come to confirm and reinforce pre-existing low self-esteem.
Psychologists call this reciprocal relationship between shame and low self-esteem shame-proneness.1
What is Shame-Proneness?
None of us are perfect and we all do things that fall outside of what we are supposed to do or should do. Many times, our actions that fall outside of social norms are unintentional, whereas sometimes they are intentional. We sometimes, for example, offend people. Usually, we do so accidentally, but sometimes we do so on purpose because we are angry. In either case, we rightly feel bad and our unpleasant feelings lead us to apologize and attempt to do better next time. There are any number of ways that our behavior can fall outside of the expectations of what we are supposed to do.
Ideally, in these circumstances, we are able to feel guilt, accept ownership of our wrong-doing, apologize, and move on. We move on in the knowledge that we are essentially a good person and our wrongful action was an irregular variation of behavior in an otherwise good person.
Some people, however, struggle to move on from occasional variations of behavior that cross the line of social expectations. The unpleasant feeling lingers. It festers. The shame confirms a general sense of oneself as unworthy or not good enough.
For the shame-prone people, these occasional wrongful behaviors are high stakes. Every action and quality of who and what they do has
potential for being found out. Wrongful behavior, whether intentional or not, makes apparent to others what shame-prone people know about themselves: that they just aren’t good enough. Shame-prone people ruminate, or beat themselves up, in lingering shame over past events, and worry about what other people think. In being shame-prone, any fault, however slight, carries the potential for feeling bad about oneself if seen or called out by others.
Because everything is potentially high stakes, shame-prone people are sensitive to feedback. They take constructive criticism personally. Indeed, all feedback can come to be seen as criticism. Observations by others are potentially negative judgments confirming their sense of low self-worth.
Given these sensitivities, shame-prone people are quick to become defensive. In hearing the observations of others as criticism, they downplay or deny the accuracy of those observations. “No, that’s not it at all…”, they might say in response to a statement that they perceive as pointing out some short-coming, even if it was never intended as such.
Shame-prone people are thus quick to feel shame, have low self-esteem, sensitive to feedback, and quick to become defensive.
Shame and Chronic Pain
Living with chronic pain can readily lend itself to experiences of shame. People with persistent pain can feel ashamed for any number of reasons, but some common experiences of shame are the following:
- When others perceive you as not coping well enough
- When you are disabled by pain
- When you take opioids for pain
Let’s take these situations one at a time.
When others perceive you as not coping well enough
Coping is our subjective response to a problem. It’s what we think, feel and do when reacting to a problem. Coping has a number defining characteristics.
Coping is subjective, meaning that it can be unique to an individual, given one’s current and historical circumstances. So, different people can cope with the same problem differently. These differences can be due to what they believe and know about the problem, what they have learned about the problem in the past, and their present life circumstances, such as levels of support or how many other stressors or problems they are experiencing at the time. All of this is to say that different people might perceive the same problem differently and respond to that problem differently. In other words, they cope differently, even if it is the same problem, and their coping is subjective to them and their life circumstances.
Coping involves a range of responses from better to worse. In this way, we might see coping as subjective responses along a spectrum that ranges from more effective to less effective. We’ve all had the experience in which we found ourselves needing to cope better with some life stressor. Suppose, for example, you find yourself coping with a work or family conflict by recurrently indulging in comfort foods. WIth time, you come to see that these behaviors aren’t working well and so you start going for a walk each day instead. You start to experience the stress-relieving benefits of regular aerobic exercise and you start to feel better. The conflict at work or in the family might continue, but it could rightly be said that you are now coping with it better than you had in the past when you were compulsively eating comfort foods. Given its inherent subjectivity, coping involves any number of ways of responding and these ways range along a spectrum from more effective to less effective.
Coping is sometimes judged in our society. Despite common warnings against it (e.g., ‘Don’t judge until you walk a mile in their shoes’), people might think that you should be coping better than you are. It happens because different people can cope with the same problem differently. As such, it sets up a comparison between who is coping more effectively than who. These negative judgments are what we call stigma. Feeling stigmatized is a common experience among people with chronic pain. Others can perceive you as not coping as well as they think you should and, as a result, you feel stigmatized.
Being judged can lead to shame. When others judge you for how you are coping with pain, they are not judging how much pain you are in, but rather they are judging you and how you are responding to pain. Such judgment from others can hurt. This hurt feeling is shame.
When this experience happens commonly, people with chronic pain can come to anticipate negative judgments, and start reacting accordingly before it even occurs. You can even come to perceive it in others when it may or may not be happening. These perceptions lead to shame and subsequent defensiveness.
In this manner, stigma can lead people to become shame-prone. It is an understandable reaction. Critical judgements from others hurt. If you get hurt enough, you come to learn that others are not always nice. A wall of defensiveness can come to be built around you, complete with a guard who is on the lookout for critical judgements. A sensitivity to perceptions of stigma leads to quick reactiveness involving feelings of shame and anger and defensiveness.
This understandable reaction is problematic. Sensitivity to being shamed and its subsequent angry defensiveness are not a fun way to live and it leads to a general sense of distress and unhappiness. Wouldn’t it be good to not care so much about what other people think and instead have an inner sense of strength in knowing that you are still a good person no matter how you are coping with pain?
Being shame-prone when it comes to how you are coping with pain can also lead to an unwillingness to learn how to cope better with pain. While most anyone would agree that it is a good thing if someone comes to cope better with pain, the problem is that to do so requires acknowledging that you aren’t coping as well as you could. This acknowledgement opens you up to potential judgment or stigma, and thus shame. Who wants to acknowledge that there may be ways that you might cope better with pain, ways that you currently don’t know how to do. Doesn’t that just mean you aren’t coping very well? Such an acknowledgement seems like a failure, something for which you should feel ashamed.
The shame-prone way out of his dilemma is to deny that there is anything possible to learn. Common ways that people with persistent pain make this point are by asserting that they have the highest pain tolerance than anyone they know, or that, given their pain levels, it would be impossible to cope better – “if you had as much pain as I do, Doc, you’d just know.”
These reactions are some of the most common reasons people with persistent pain resist seeking care at a pain rehabilitation program or clinic. Pain rehabilitation is a scientifically proven type of pain clinic that attempts to not only reduce pain, but show patients how to cope better with pain. In order to come to a clinic like that, you have to acknowledge that there are ways to cope better with pain that you don’t already know how to do. Now, many people see this prospect of learning to cope better with persistent pain as a good thing, but still some others are so sensitive, or shame-prone, that to acknowledge they aren’t already coping as well as they possibly could is just too difficult. As a result, these latter folks come to resist recommendations to participate in the program or clinic. It’s not uncommon when reviewing recommendations at a new patient evaluation, for some patients to say, “I don’t need that… In fact, I could teach you a thing or two!” It’s as if the individual is saying that he or she is coping as well as one possibly can and so there is nothing left to learn. Another common rejoinder is when patients say, “But, I have real pain”, as if to say that real pain is pain which just has a certain response that cannot be changed, so therefore learning to respond more effectively to it is irrelevant or impossible. As a result, they don’t seek a form of pain management that is helpful to a lot of people with persistent pain.
When you are disabled by pain
Another common experience of shame occurs when people with persistent pain are disabled by pain. This scenario is not altogether different from those above, but it centers on the issue of being unable to work in the context of others who expect that you should be able to go back to work.
When people with chronic pain are disabled from work due to pain, others can sometimes doubt the legitimacy of pain as a reason for being disabled. They look upon their relative, say, with chronic low back pain or chronic daily headaches, and recognize that their family member doesn’t fit into the usual categories of what constitutes a disability: their relative isn't blind or deaf or paralyzed, and they have a full capacity of intelligence – they don’t have a developmental disability and nor have they had a stroke or traumatic brain injury that has impaired their intellectual faculties. As such, others wonder why their family member perceives themselves to be disabled.
The implication, of course, whether spoken aloud or not, is that people with chronic pain should be able to work.
This doubt hurts. This kind of hurt is shame and subsequently it’s easy to get defensive: “If you had my level of pain, you wouldn’t be able to work either!” It can feel offensive – “How dare they think I should be able to go back to work?”, but underlying this indignation is shame. It’s the shame of failing to meet social expectations. It commonly needs reassurance that you really are a good person, even if you can’t work.
The whole situation is further compounded by the fact that some people with persistent pain remain at work. Some people, that is to say, successfully self-manage their pain. While they may make accommodations for certain impairments that they have, they have the ability to manage their pain so well that they have little adverse impact from their pain. They have found ways to remain functionally engaged in life, including work, despite having persistent pain. They may have acquired these abilities on their own, through life circumstances, or they may have learned these abilities in a chronic pain rehabilitation program. Either way, they successfully self-manage chronic pain and are engaged in meaningful life activities, such as work.
The fact that some people continue to work with persistent pain while others are disabled by persistent pain sets up a contrast that can lead to shame in those who experience pain as overwhelming and disabling. The shame-based, defensive reaction to this latter situation is to insist that those who are disabled by pain have significantly more pain than those who aren’t disabled by pain. However, we know from years of research that this assertion isn’t true on average.2, 3, 4 We know, for instance, that pain is only part of what leads people to see themselves as disabled. How they are subjectively experiencing and responding to pain also plays a role. That is to say, how effectively they are coping with pain is also an important factor in what leads people with persistent pain to become disabled by pain.
It’s here again where we see the connection between coping and shame when it comes to living with chronic pain. Coping involves how you are subjectively responding to pain. If both pain and how you are responding to pain determine whether you are disabled or not, then there is the possibility that those who continue to work have less pain than those who are disabled, but there is also the possibility that those who continue to work are somehow handling their pain better than those who become disabled. That is to say, they are coping better than those who experience pain as overwhelming, intolerable and disabling. This possibility can result in the sting of shame.
When this scenario goes on long enough, it is easy to become shame-prone. Talk of work or what you do for a living is fraught with potential judgment. You already don’t feel good about yourself for not working, and the mere mention of work or going back to work can become a sensitive topic. As such, it is also easy to become defensive, feeling as if you have to prove the legitimacy of your pain and disability.
Being shame-prone in regard to pain-related disability can lead to a redirection of your therapeutic attention and energy. In living with chronic pain, you want to spend your efforts at getting better, but in becoming shame-prone, you can find yourself spending your efforts at proving the legitimacy of your pain and its resultant disability. Often, the harder you try to prove the legitimacy of your disability, the less others believe you. A vicious cycle of shame and pain and disability results.
This vicious cycle can prevent participation in pain rehabilitation programs and clinics. As described above, pain rehabilitation is a scientifically-proven way to help patients with persistent pain acquire the abilities to successfully self-manage pain and return to work. In coming to such a program or clinic, there is an implied understanding that the patient can benefit from participating and acquiring these abilities, which usually is seen as a good thing. Among the shame-prone, however, it can require too much of a shameful acknowledgement – that you are not already coping as well as you could, and thus there is a way forward in reducing your disability and returning to work that you haven’t already pursued. When this understanding is fused with too much shame to admit it, it’s easy to become defensive and deny that pain rehabilitation would benefit you by asserting that you already are coping as well as humanly possible given the pain levels you have. The justification of past assertions of disability, which others had previously doubted, thus come to require today’s assertions that you have already done everything possible to get better. As such, shame and stigma underlie these dynamics and prevent participation in therapies that help people with persistent pain go back to work.
When you take opioids for pain
Another common pain-related experience of shame occurs when people with chronic pain take opioids for pain. It is much the same dynamic as above, but specific to opioids. This dynamic is the feeling of shame when others perceive you as failing to meet social expectations that you should be able to cope better and go without opioids.
Whether you agree with it or not, there is a social expectation that in general we shouldn’t rely on addictive substances. No one aspires, for instance, to become dependent on addictive substances. It is not a socially held value. Instead, we tend to believe as a society that we should be able to manage life’s difficulties without reliance on them.
Now, some uses of addictive substances get a pass from this social expectation. Short-term, recreational use of some addictive substances, such as alcohol, for example, is deemed acceptable, while short-term use of addictive medications for health-related reasons is also seen as acceptable, such as the use of a sedative to have an MRI scan for those who are claustrophobic. What tends to make these uses acceptable is that it is short-term, and so not long enough to develop dependency, whether physiological or psychological or both. If, in either of these cases of alcohol or sedatives, the use comes to last longer and dependency develops, it becomes frowned upon by society.
The one exception is opioids for terminal diseases. As a society, we justify the dependency that develops with long-term use of opioids in cases of terminal disease because the lifespan is considered to be short-term. The alleviation of pain and suffering is seen as a greater value than the social expectation against becoming dependent when it occurs within the context of a short-term lifespan.
This latter equation fails to equate when the variable of lifespan changes from short-term to long-term. In other words, the social expectation against becoming dependent on opioids maintains its greater value against the competing value of alleviating pain and suffering when the lifespan is normally long-lived. As a society, we tend to think that those with persistent pain of a non-terminal health condition should be able to self-manage their pain, rather than become dependent on opioids.
This social expectation has withheld against at least two decades of effort by the medical and pharmaceutical industries to change it and make it acceptable to be dependent on opioids for the long-term management of benign, chronic pain.
Now, many in the chronic pain community, whether patients, their family members, or their healthcare providers, will still vigorously defend the long-term use of opioids for benign, chronic pain, and argue that we still need to engage in efforts to make it acceptable in the eyes of society.
Nonetheless, it is still true that these efforts have been largely unsuccessful and it remains a social expectation that we shouldn’t become dependent on opioids for the management of chronic pain. Society tends to put chronic pain into a similar category of other life problems which we do not tend to die from, but which we instead are expected to learn to live with. As such, dependency remains seen as more problematic than these life problems and so we do not tend to allow for reliance on addictive substances to alleviate the pain and suffering of the associated life problems.
Perhaps, one reason why society tends to resist the decades-long effort by the medical and pharmaceutical industries to make the long-term use of opioids for chronic pain acceptable is that most people with chronic pain do not manage their pain with opioids.5 Most people in the general population, in other words, do not rely on opioids to manage their persistent pain. This statement remains true for those who rate their pain levels in the moderate to severe range of intensity, a range that the medical and pharmaceutical industries have long maintained is the pain level for which opioids are indicated.
Thus, there remains a social expectation that people with chronic pain should learn to manage their pain without opioids. When those with chronic pain go against this social expectation and manage their pain with the long-term use of opioids, they tend to be judged and stigmatized.
The argument here is not a defense of this position, but it is simply making an observation that remains true despite considerable effort over two decades by many in the pain community to change it.
Another true observation is that this social expectation against the use of opioids for chronic pain is a source of shame for those in the pain community who rely on them. Despite many commonly asserted justifications, reliance on opioids maintains pain patients in a chronically defensive position that is ultimately untenable given the persistence of this social expectation.
Patients who rely on the long-term use of opioids for the management of chronic pain have countless stories of friends, family, and healthcare providers who question their use of opioids. These stories are stories of being shamed for using opioids. They are profoundly distressing.
Just consider what happens in the routine office visits that are required to obtain on-going opioid prescriptions for pain:
- Signing a controlled substance agreement
- Having to initial beside each of its paragraphs to signify understanding and agreement
- Submitting to urine screens
- Frequent visits to be asked over and over again the same questions about potential misuse of the medications, all of which can come to have an accusatory air about them
- Persistently feeling as if you have to defend yourself and justify your use of the medication
- Worrying how you’ll explain yourself when there is even the slightest deviation from your prescribed use
- Worrying the night before each visit whether your healthcare provider will continue the prescription
- Worrying about if or when your prescribing provider will move away, change jobs, or retire
All of these experiences and more can tend to boil down to a persistent, demeaning and demoralizing experience, which being shamed is the underlying feeling. The implicit context is that you are failing to meet social expectations by being reliant on opioids and so therefore you fall under persistent scrutiny. No one typically says it, but the implied message is that you should be coping better so that you don’t need these medications to do it for you.
Over the decades, any number of justifications have been developed to make long-term opioid use for chronic pain acceptable and so alleviate the user of opioids from such shameful scrutiny:
- Opioid addiction is rare
- People don’t get addicted if used for pain
- People who use opioids for chronic pain are dependent, not addicted
- Reassuring everyone that you don’t take pain medicine to get high, but rather because it helps with pain
- Rhetorically arguing that since your pain remains severe with the use of opioids, just think what it would be like without opioids?
- Asserting that one’s pain is more severe than those who don’t manage their pain with opioids
- Asserting that, when others question whether opioids are needed, it is just evidence that they don’t know what it is like to have chronic pain
- Referring to certain pain conditions (e.g., trigeminal neuralgia , cluster headache, migraine, complex regional pain syndrome, etc.) with the use of the word “suicide” as an adjective, as in “the suicide headache”
- Asserting that life wouldn’t be worth living if having to experience pain without opioids
The pain community that promotes the use of opioids continue to this day to assert new justifications:
- Asserting a new class of chronic pain that is “intractable pain”, which warrant the use of opioids
- Identifying certain conditions as “rare diseases”, which are justifiable indications for opioids
However, the fact that these justifications have to continue to be asserted, and even new ones developed, belies the further fact that the social expectation that we shouldn’t use opioids for chronic pain remains a predominant social value. Given this social expectation and the subsequent questioning of these justifications, the experience of the opioid dependent pain patient is one of shame, indignation, and defensiveness. And as long as the social expectation remains predominant, the position of the patient remains untenable.
Becoming shame-prone is a common side-effect, if you will, of the long-term use of opioids for chronic pain. We earlier defined shame-prone as a state of recurrently feeling shame, with subsequent low self-esteem, sensitivity to feedback, and quick to become indignant and defensive.
We might consider this set of traits as an understandable yet unfortunate consequence of both dependency on opioids and the stigma of living under persistent scrutiny for failing to meet the social expectation against such dependency. No one feels good about themselves for taking opioids and the persistent scrutiny inherent in office visits and the stigmatizing judgments of others are just persistent reinforcers to the low self-esteem that results. With time, how could this untenable position not become internalized and thus come to be anticipated by the pain patient in his or her future interactions with others? All but the strongest among us would succumb to the persistent stigma and build a wall of sensitivity and defensiveness – and who really is strong enough not to succumb?
The typical person with chronic pain who has been dependent on the long-term use of opioids doesn’t have a take-it-or-leave-it attitude to their use. Rather their use has a sense of urgency about it, and talk of not using is threatening in a way that often feels stigmatizing because the social expectation against using opioids is always in the background. Uncommon is the ability to have a calm, thoughtful debate about the merits of using opioids versus not using opioids. Rather, in attempting to have such discussions, an unspoken shame fills the room, followed quickly by perceptions of stigma and subsequent indignant defensiveness. In other words, discussions about not using opioids in those who have been dependent long-term on them is almost always a sensitive topic to which defensiveness is the result.
This shame-prone sensitivity often gets in the way of participating in pain rehabilitation. As discussed above, pain rehabilitation is an empirically-supported therapy that aims to help patients acquire the abilities to successfully self-manage pain without the use of opioids while at the same time providing modest reductions in pain. For many patients, such therapy is a win-win: they get to come off opioids and free themselves from all of the problems associated with using them, while at the same time having less pain than when they were taking opioids. Despite these benefits, patients who are dependent on the long-term use of opioids commonly forego participating in the therapy. The act of discussing recommendations to participate in a therapy that involves a slow, safe taper feels just too stigmatizing and accusatory. The social expectation against using opioids looms in the background, eliciting shame-based reactions:
- “But, I’m not addicted!” (i.e., addiction is the only reason why one would stop using opioids if pain continues on a persistent basis)
- “Don’t you believe me that I have pain?” (i.e., pain requires opioids so if there is a suggestion that one could learn to go without opioids that just means you don’t believe there is pain)
- “If you think it’s possible to stop using opioids, don’t you think I would have done it a long time ago?” (i.e., pain requires opioids to manage it; it is impossible to manage pain well without them)
- “I’m going to go to someone who understands that I have real pain!” (i.e., variation on above, pain requires opioids to manage it; it is impossible to manage pain well without them)
All of these indignant reactions are common when hearing the recommendation to participate in a therapy that reduces both pain and the need for opioids. Reassurances by the recommending provider to all of these reactions fall on ears – deafened by shame and histories of feeling stigmatized for the use of opioids. Shame-proneness and its sensitivity and defensiveness makes the potential good thing of having less pain without the use of opioids into a bad thing that must be resisted. It would be tantamount to admitting that the social expectation against using opioids is right and that you have, in fact, been shamefully wrong all these years. Chronic use of opioids begets shame and shame begets the need to continue opioids to justify their past use.
What to do if you find yourself shame-prone
Shame is not a disease. So, it is hard to say that there are treatments, per se, for it. It is, rather, a human emotional experience, one that is common, normal, and understandable. It is also distressing.
It can, however, be overcome.
It usually involves psychotherapy with a psychologist. Psychotherapy is a form of treatment that involves a trusting, therapeutic relationship with a healthcare provider who has an expertise in a certain problem area, and who coaches patients on what they can do to get healthier with regard to their problem area. Psychotherapy is predominantly considered a treatment for mental health conditions, such as anxiety, trauma, depression, and insomnia, and indeed there are scientifically-proven psychotherapies for all these conditions. However, psychotherapy is used for other health conditions, such as pain, diabetes, heart disease, and even certain forms of cancer. The common denominator to all these conditions is that there are things that patients can do to get healthier and either gain greater control over the condition or reduce its impact on everyday life. Patients learn and practice these abilities within a supportive, coaching relationship, otherwise known as psychotherapy.
Ever since the advent of the modern pain clinic in the early 1970’s, psychologists have been an integral member of the treatment team. Successful pain management requires, not just therapies delivered by healthcare providers, but also health behavior changes on the part of patients that can reduce pain and its impact on day-to-day life. Patients learn and practice these healthy changes in a supportive, coaching relationship with psychologists at the pain clinic.
Because the afore-mentioned instances of shame are related to pain, you might start looking for a pain psychologist to see. Pain psychologists are psychologists with added training and experience in the treatment of pain and its related problems. Typical areas of focus for pain psychologists are to help patients acquire abilities to do any of the following:
- Reduce pain
- Cope better with the pain that remains
- Reduce the use of opioids or other on-going healthcare needs
- Increase the ability to engage in meaningful life activities, such as work, volunteering, family or community activities, etc.
To achieve these therapeutic goals, pain psychologists engage in multiple therapies, the most common of which is cognitive-behavioral therapy.
This last point is true, especially when considering shame-proneness as a reason for starting psychotherapy. Shame-proneness is not unique to living with persistent pain. It can occur with any number of problems that people commonly have. Oftentimes, it occurs with problems that carry stigma: substance use disorders, such as alcoholism; mental health disorders, such as anxiety, depression, trauma; and health disorders, such as obesity. As such, psychologists who specialize in the treatment of these non-pain conditions will also specialize in the management of shame and shame-proneness. So, even if you don’t have access to pain or health psychologists, you can still find help with psychologists who can help you to manage shame more generally.
The coaching relationship in psychotherapy is supportive and non-judgemental. It is also confidential and professional. These aspects of a psychotherapy relationship with a health care provider buffers against shame. You get to talk about anything that disturbs you and work on ways to overcome it. You can share and work on issues, like shame, that you wouldn’t otherwise discuss with others. It remains confidential and your psychologist will remain professional, non-judgmental and supportive.
Psychotherapy can thus liberate you from the chains of shame. You become stronger in the sense that you can acknowledge your faults, look at them, and work on them for the better. The acknowledgement of shame is not weakness, but strength. Psychotherapy allows you to develop such strength to meet your problems head on and overcome them.
1. Tangney, J. P., Wagner, P., & Gramzow, R. (1992). Proneness to shame, proneness to guilt, and psychopathology. Abnormal Psychology, 101(3), 469-478.
2. Kovacs, F. M., Abraira, V., Zamora, J., Teresa Gil del Real, M., Llobera, J., & Fernandez, C. (2004). Correlation between pain, disability, and quality of life in patients with common low back pain. Spine, 29(2), 206-210.
3. Zale, E. L., Lange, K. L., Fields, S. A., & Ditre, J. W. (2013). The relation between pain-related fear and disability: A meta-analysis. Journal of Pain, 14(10), 1019-1030. doi:10.1016/j.pain.2013.05.005
4. Zale, E. L. & Ditre, J. W. (2015). Pain-related fear, disability, and the fear-avoidance model of chronic pain. Current Opinion in Psychology, 5, 24-30.doi:10.1016/copsyc.2015.03.014
5. Nahin, R. L., Sayer, B., Stussman, B. J., & Feinberg, T. M. (2019). Eighteen-year trends in the prevalence of, and health care use for, noncancer pain in the United States: Data from the Medical Expenditure Survey. Journal of Pain, 20(7), P796-809. doi:10.1016/j.pain.2019.01.003
Date of initital publication: January 17, 2022
Date of last modification: January 17, 2022
I recently was at a meeting on designing a model of pain care delivery. The meeting was filled with clinical and operational experts. In the course of the meeting, one healthcare provider made the case that high quality pain care starts with “finding the pain generator.” By this phrase, he meant that the delivery system should support the use of scans and diagnostic injections to identify the orthopedic structure(s) responsible for any given patient’s pain. From there, he insisted that a foundation could be laid for establishing successful treatment plans to resolve the identified pain generator, presumably through interventional and/or surgical means.
Once having made his case, another provider spoke up and asked how he’d square the care delivery model he proposed with the fact that so-called “pain generators” lack any significant correlation with pain. She cited common evidence showing that findings on MRI scans do not correlate with pain, and that diagnostic injections lack reliability and validity (cf., Vagaska, et., 2019; Kreiner, et al., 2020). In so doing, she used science to challenge the whole foundation on which the previous speaker had advocated for his model of pain care delivery.
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