Notice: Undefined offset: 1 in /home/inst1tut3/public_html/plugins/system/k2/k2.php on line 702
Anxiety and Pain https://www.instituteforchronicpain.org Tue, 31 Jan 2023 09:56:54 +0000 Joomla! - Open Source Content Management en-gb On Can't and Able https://www.instituteforchronicpain.org/blog/item/236-on-can-t-and-able https://www.instituteforchronicpain.org/blog/item/236-on-can-t-and-able

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. 

While, to be sure, pain reduction is important, the ability to do more or life's activities is also important. The ability to engage in meaningful activities is one of those things that make life worth living. Perhaps, it is the ability to hold your child or grandchild, or get down on your hands and knees and play with them. Maybe, it’s going out to eat with your spouse, or going to a movie or concert or town festival. Or, perhaps, it’s the ability to go back to church, mosque or synagogue, and participate once again in your religious community’s activities. Maybe, too, it is the ability to go back to work. All of these activities, and more, bring value to life.

Regaining the ability to do some or all of these activities would be a win. It would be an important win in your effort to manage persistent pain well. 

Such is the promise of pain rehabilitation programs. Sure, most people who attend such programs don’t leave pain free. Instead, they tend to have modestly less pain (which, by the way, is true on average for all procedures, pills and therapies when it comes to moderate-to-severe, persistent pain), but the real gain is that they get their life back. They acquire the abilities to do those activities that make life meaningful again. They can have fun again. They can do things with their loved ones again. They can work again. They can participate in life again. 

Despite these positive outcomes, the prospect of really getting down to it and doing the hard work of getting your life back can also be a Image by Giorgio Trovato courtesy of Unsplashsensitive issue. For so long, you may have maintained that you can’t do these things. As such, in the background, there’s always that persistent doubt as to whether it’s really true that you can’t do the things that you say you can’t. Perhaps, it started when your spouse, friend or healthcare provider first disagreed with you and said that you really can do the things that you had said you can't. Initially, they might have meant it with a sense of optimism, as if they were trying to act as your cheerleader. With time, however, the optimistic nature of their point of view changed. Their assertions that you really can do things that you said you couldn’t became more like accusations. They came to doubt your perceptions of yourself as disabled. They may even now think you’re faking it. There’s a whole range of ways people can disagree with your understanding of yourself as disabled.

Perhaps, too, all these things that other people have said and thought about your view of yourself as disabled has occurred so many times that it is now just out there, in the background, of your day-to-day life. No one even needs to say it anymore. Your abilities and your daily activities seem always open for scrutiny by others. 

To this problem, it’s easy to slip into needing today’s disability as a means to justify your past assertions of disability, which have been previously doubted. It can become a vicious cycle: the legitimacy of your disability can involve a continual need for justifying the legitimacy of your disability. You say you can’t. They say you can. The only way, it seems, to prove to them that you can’t is to continue to be unable to do what you’ve maintained you can’t do.

Perhaps, it has even gotten into your head. In vulnerable moments, you wonder to yourself, “What if they’re right?” This doubt creeps into the back corners of your awareness, but the thought of it is too shameful to consider

As such, the immediate counter-thought is to think to yourself that you really can’t do these things. Such inner (and outer) doubt isn’t in fact true. You have persistent, severe pain. Is that not justification enough for being unable to do certain daily life activities? The answer to this rhetorical question seems obvious. You subsequently maintain your long held position that you can’t pick up your grandchildren, or attend a concert, or go back to work, or whatever the activity may be.

The inner life of someone disabled by persistent pain thus becomes marked by back-and-forth assertions of impairment and doubts of those impairments. Can’t or able, that is the question…

It’s a sensitive issue.

Into this mix, the prospect of participating in a pain rehabilitation program can seem daunting. As mentioned above, the promise of such programs is that they help people with moderate-to-severe chronic pain get back into life. A primary goal is to be able to again do things that you haven’t been able to do. To start this process, though, you have to acknowledge that it is possible. If you have long maintained to others (and even yourself) that you can’t do things like work or social activities or religious activities, how do you cross that bridge into a space where maybe, just maybe, you can come to be able to do those things?

It’s one of those odd situations in life, where hope can be threatening. Countless times in my career, I have recommended participating in a pain rehabilitation program with the promise of taking back control and in my mind I am offering hope, but am surprised when it is met with scorn: “You think I can just go back to work?!? You must have no idea how much pain I am in!” Immediately, I attempt an explanation: “No, I know you can’t work right now, but the program will help you to get back to the point where you could… It’s one of the things that pain programs do best.. In fact better than other forms of treatments…” A common patient rejoinder comes quickly, “But, you said I’d still have pain! You think it’s so easy to just go back to work with the pain I have? I suppose you think it’s just mind-over-matter?” By this point, it’s typically too late. I thought I was offering hope, but the patient leaves the visit upset and feeling invalidated

It doesn’t have to be this way, though. There is a way to hear the promise of a better life, in which it is possible to regain lost abilities. For, afterImage by Henry Co courtesy of Unsplash all, that is what rehabilitation is all about: getting back the abilities to do what you currently are unable to do, given an on-going health problem, like chronic pain. Whether it is a stroke, a traumatic brain injury, a spinal cord injury, or chronic pain, the goal of rehabilitation for these on-going conditions is to become more functional. That is to say, rehabilitation doesn’t necessarily cure these conditions, but it is a proven way to acquire the abilities to engage in meaningful life activities, despite the on-going nature of these conditions. 

From this perspective, pain rehabilitation programs can be the bridge between can’t and able. You can’t do certain activities now, but with rehabilitation you come to be able to do them.

To be sure, it is hard work and it takes time. A typical pain rehabilitation program is 3 or 4 weeks long, but they really serve to jump start you into the rehabilitation process, which you pursue for much longer. Ideally, you come to do the therapies on your own and make them part of your new lifestyle. In this process, you come to be able to do things that were once impossible for you to do.

An additional, interesting thing happens when you do. The process of rehabilitation allows you a way out of the vicious cycle of needing to justify your disability in the face of the doubts of others. The legitimacy of your past disability remains even while you engage in the hard work of rehabilitation and slowly make progress (or perhaps because of it). The work necessary to again be able to do things is out in the open and there for everyone to see. Pain rehabilitation programs thus create a space from which you can safely transition from disability to ability and it does so without any underlying shame

Indeed, more often than not, others, who may have once doubted the legitimacy of your disability, come to admire your hard work and new-found achievements. Of course, you aren’t doing it for them, but it does help. They see that coming to be able to do things you once were unable to do took work, which was guided by professionals. They see such work and recognize that it is an achievement. With effort and achievement, you leave those doubts of others in your past.

“Thank you for giving me my life back.” It’s the most common response of pain rehabilitation program patients upon their completion. Through the hard work of pain rehabilitation, patients with moderate-to-severe persistent pain can come to physically and psychologically be able to do things that were once impossible. They can engage in meaningful life activities, while at the same time liberate themselves from the need to justify their (now previous) impairments in the face of others who doubted the legitimacy of those impairments. The pain rehabilitation program served as a bridge that allowed them to cross from can’t to able.

Date of publication: 8-27-2022

Date of last modification: 8-27-2022

About the author: Murray J. McAllister, PsyD, is a pain psychologist and consults to clinics and health systems on improving pain care. He is the founder and editor of the Institute for Chronic Pain.

]]>
joemcallister4@gmail.com (Murray J. McAllister, PsyD) Chronic Pain Rehabilitation Programs Tue, 09 Aug 2022 17:47:09 +0000
Shame and Pain https://www.instituteforchronicpain.org/understanding-chronic-pain/complications/shame https://www.instituteforchronicpain.org/understanding-chronic-pain/complications/shame

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 Image by Sergey Vinogradov courtesy of Unsplashunpleasant 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-Image by Luis Galvez courtesy of Unsplashprone 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

If you live in an area that doesn’t have pain psychologists to see, other good options are health psychologists, as well as psychologists whose expertise is in mental health disorders.

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.

References

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

]]>
joemcallister4@gmail.com (Murray J. McAllister, PsyD) Complications Sun, 16 Jan 2022 17:18:52 +0000
When Good Things Become Bad Things https://www.instituteforchronicpain.org/blog/item/203-when-good-things-become-bad-things https://www.instituteforchronicpain.org/blog/item/203-when-good-things-become-bad-things

I am nearing the end of a forty-five minute initial evaluation for our interdisciplinary chronic pain rehabilitation clinic and my patient is an amiable woman in her late forties from the suburbs. She drove a minivan to the clinic and attends the evaluation while her three children are at school for the day. Her primary care provider had referred her to us because of her chronic and disabling low back pain, which over the years had become progressively worse and more widespread.

On a daily basis, she has back and right leg pain, she tells me, but on some days, she has pain all over. She has undergone two lumbar spine surgeries, which she expresses were successful even though her pain continued and in fact worsened over time. She explains the discrepancy by stating that the “degenerative disease in my spine keeps getting worse.” She has undergone various series of epidural steroid injections, which, when she first starting getting them, were helpful in that they produced about a week’s long reduction in pain, but she states now, “They don’t work anymore.” She reports also having had a neuroablation procedure that unfortunately “made things a bit worse.”

My patient tells me that her low back pain began during the second pregnancy of her three children. At first, it came and went, but over time it came to stay. She began to seek healthcare for it eight years ago with her primary care provider. At the time, the provider prescribed a short-acting opioid two times daily and recommended that she walk for about twenty to thirty minutes, four times a week. She indicated that her primary also reassured her that her pain would dissipate as it had in the past. After her third refill request, her provider re-evaluated her and ordered an MRI scan with subsequent referral to a spine surgeon. Her first lumbar surgery, an L5-S1 fusion, reduced the pain initially, but after having returned to full-time work for a few months the pain worsened. With an increased dose of opioids, she attempted to return to work yet again, but eventually she stopped working altogether. Her burgeoning career had ended. Since having given up attempts to return to work, she underwent another fusion. She repeats to me today that this secind surgery was successful, but it’s unclear to me how it’s been successful. She has remained distressed and disabled by pain and it continues to require the use of opioid medication that’s been increasing in dose over time. I decide against asking further about the topic and move on with the evaluation.

Understandably, the loss of her career has been a persistent source of grief and loss for her. To make things worse, with some individuals of her extended family, this loss of work has been a source of stigma too. She professes a number of times she loved her job. She implies, with an endearing sense of humility, that she was good at what she did. Between the lines, it seems clear that her self-esteem seemed grounded in her highly adept multi-tasking abilities to raise three children, be a loving and helpful spouse, and work a 40+ hour professional position in a career for which she had gone to college. By all accounts, she was really good at all of it and she was rising through the ranks of her organization. Until, her pain became too much.

But then, she became caught between either maintaining the career she loved with increasing back pain or reducing her back pain and acquiring a persistent grief and stigma over giving up her beloved career.

Again, I don’t challenge her reported history and the dilemma she experiences. I have no reason to do so, as her experience is so understandably common. In the interview, I repetitively try to empathize with her and show her that I understand and do not judge.

Nonetheless, throughout the interview, in what seems like anticipation of potential criticism from me, she recurrently stresses that she has tried everything in order to remain at work – multiple surgeries, numerous interventional procedures, multiple physical therapies, occupational therapy, and increasing levels of opioids. She persistently expresses to me how much she loved her work. She says a number of times that she would return to work in a heartbeat if she could find something that would reduce her pain.

The only thing that she identifies as at all helpful is her “pain medicine,” by which she means opioids. She acknowledges that the opioids haven’t helped her return to work, but stresses that it’s because her pain is just too great. She volunteers often in the interview that the opioids “take the edge off” and that they “allow me to function enough to get my kids off to school and keep the house running.”

Like the fact that she’s not working, my patient seems vulnerable about her use of opioids. She acknowledges that she’s becoming quite tolerant – she’s now on moderately high doses of both long-acting and short-acting opioids for pain. Nonetheless, she recurrently stresses how bad her pain would be without them. She also asserts a number of times that she’d give them up in a minute if there was something that would get rid of her pain, but as her treatment history demonstrates, she’s tried many procedures and therapies and nothing has worked. So, she’s caught in yet another dilemma: she has to take something that she doesn’t want to take.

My patient offers these repetitive assertions without any prompts or inquiries from me. Throughout the evaluation, I never challenge her reported inability to work or the necessity of her use of opioids. Rather, I maintain a friendly, neutral, and non-judgmental demeanor.

We near the end of the evaluation and it is customary at this time to discuss a proposed treatment recommendation as well as other potential treatment options from which she can compare and contrast the proposed recommendation. Other than my experience of having performed this kind of evaluation countless times before, I have no indication that the ensuing discussion will be anything but collaborative. For indeed, because of her repetitive expressions of distress about both her job loss and the necessity of having to take of opioids, I might have every reason to believe that she’ll welcome my recommendation to transfer her care to our clinic, as we specialize in the things that she finds most distressing: her persistent intolerable pain, her resultant disability from work, and the fact that at this time she needs opioid pain medications to manage her pain. What we can offer her, in other words, is the opportunity to have a team of supportive, non-judgmental experts help her to gradually acquire the abilities to self-manage pain without opioids and return to work in some meaningful capacity – both of which are things that no other pain clinic that she’s previously seen has offered her. So, given her repetitive assertions that she’s tried everything and so must remain on opioids, I can offer her hope that we have a therapy that she hasn’t yet tried, which allows her the opportunity to learn how to manage pain without opioids.

Given my past experiences, however, I approach the recommendation in a gentle manner. I review with her my understanding of the dilemmas she has faced and empathize again with how anyonechuttersnap 193778 compressor would find such problems difficult. I want her to know that I understand – that I get it. I then talk about her treatment history – the different types of surgical, interventional and opioid management that she has had. I want to demonstrate that I’ve been listening and know the many different procedures and therapies she has had. I review that none of them were unreasonable, and in fact that they all have had their time and place. I then change the focus of the conversation to the fact that there has always been another type of pain clinic, called chronic pain rehabilitation, which pursues care differently, just as a surgeon is different from an interventional pain physician, we are yet again different from either, though we treat the same conditions. I review that in our healthcare system often times patients tend to get referred to our type of pain clinic after the other types of treatment have been tried and failed, which seems the case for her.

I review with her that, while we don’t typically cure people of their pain, we have an interdisciplinary team of providers who essentially serve as her coaches and we slowly and gradually teach folks just like her how to self-manage pain so successfully that they no longer require opioid medications to manage their chronic pain. I stress that it takes time and effort, but with the right kind of coaching, it’s possible to learn to self-manage pain without opioids. We also help people find some type of meaningful, structured activity to pursue, such as work, school or volunteering, which helps folks just like her get back on a track in life that they feel good about again. I review that she may or may not be able to return to her previous position, but through a combination of creatively coming up with options we might be able to identify some type of meaningful work that she could strive to obtain.

I also share with her that we have been maintaining outcomes on our program for years and that what we find is that our patients have a more than 90% reduction in opioid use and over 50% of our patients return to work, volunteering, or job retraining/school. I add at the end of my gentle and hopeful message that on average our patients report 20% less pain then when they started, even after they’ve achieved these other gains. In other words, on average, our patients have 20% less pain even though they are no longer taking opioids and have significantly increased their daily activities, by returning to work or school.

From my chair in the consulting room, this message can be heard as a beacon of hope – that she does not have to settle for the life she currently has; with hard work, coaching, and learning, she can get better. She will, of course, continue to have pain, but she will likely have less pain, be off her opioids and engaged in some type of regular, meaningful activity that allows her to feel proud of herself again. It’s a hopeful message that details a way to get better while grounded in the realism that she truly has a chronic – lifelong—pain condition.

As I near the end of this feedback and recommendation, I can tell, however, that from her chair, my message is not a beacon of hope at all. It began when her legs started to fidget. Then, tears began to well up in her eyes. By the time I finished, she had become intensely vulnerable and subsequently very angry.

I could tell that the good things our clinic has to offer had become bad things.

Now, the patient that I describe in this encounter is not an actual person. I made her up. She’s not, though, no one. She could be most any one of my patients. She could be a man in his thirties or a man in his fifties or a woman in her sixties. He might have recurrent migraine. She might have had persistent neck pain.

The point here is not the details of the individual’s presenting problem, or their gender, or whether the individual has children in school or not. The point is how an individual hears and tolerates feedback about themselves and the recommendations they receive. It’s also about one’s capacity for hope – that hope often lies in the eye of the beholder.

Because we are a clinic that specializes in people with persistent pain who are disabled by pain and/or reliant on opioids, we tend to see a lot of patients who fit these descriptions. Sometimes, we see patients who welcome the help we can provide. Nonetheless, we often see patients who become threatened by the help we provide.

It all tends to boil down to two things: one, the degree of shame, or vulnerability, that patients have for finding themselves in the position that they are in, whether it be reliant on opioids or unable to work or both; and two, the degree to which they can openly acknowledge this shame in some constructive manner.

When people have high degrees of shame and significant difficulty acknowledging it, they tend to experience stigma when others broach the sensitive topic even when no stigma was ever intended. As a result, they tend to shun open discussion of their role in their health, and instead engage in discussions of how there's nothing more to do, but what they are doing. This impassable stance thus comes to justify the sense of vulnerability, or shame, they feel for taking opioids or being disabled or both. I didn't choose this; I have to do this.  

From this perspective, my patient might make any number of counter-arguments:

  • My surgeon told me that there’s nothing more that can be done.
  • My doctor told me that I’d probably have to be on these medications for the rest of my life.
  • I have a degenerating disc disease. It’s just going to keep getting worse. You‘re not going to cure that!
  • If pain rehabilitation programs are as successful as you say they are, why wouldn’t my doctor have referred me earlier?
  • Look, I’ve done everything humanly possible to get back to work. If it’s as easy as you say it is, then you aren’t seeing people like me.
  • I have the highest pain tolerance of anyone I know and my pain would be intolerable without pain medicines.
  • I don’t know who you’re seeing in your program, but I’ve got real pain!
  • Every doctor I’ve ever seen has reassured me that it’s okay to be taking pain medicines (i.e., opioids) and to be on disability, why are you questioning it now? You talk to me all calm and gentle like, but you’re actually the meanest doctor I think I’ve ever seen!
  • You think I want to be this way? I can’t believe I’m sitting here listening to this.
  • Are you in pain? I know you’re not, because if you were you wouldn’t be saying the things you’re saying.
  • You don’t have my pain! You have no idea how bad it is. How dare you say that I can learn to cope with it. If you had my pain, you’d know I'm coping better than anyone possibly can under the circumstances!

Such responses and more are common reactions to a recommendation to participate in a chronic pain rehabilitation program where patients learn how to self-manage pain and return to work. The recommendation, of course, is meant as a good thing, a beacon of hope, that with hard work, openness and motivation, they can achieve these goals. Implied in these responses to the recommendation, however, is the rejection of the notion that patients can't do anything about their pain. The above reactions imply that patients have done all that can be done; they’ve learned all that they can learn. They've done everything humanly possible and so are beset with having to be on opioids and/or disability. The reactions are all versions of these implications -- dare not question the conclusion that remaining on opioids and/or disability is the only possible things left, because I didn't choose this -- I have to do this.

It is, however, these very conclusions that come into question with a recommendation to participate in a chronic pain rehabilitation program. The recommendation is indeed an affirmation of the pssibility of change for the better -- that, with effort over time, they can come to cope better with pain -- so good, in fact, that one wil be able to self-manage pain without opioids and return to some meaningful, structured activity, such as work. One might think that this message is a good thing – there is still more to be done and so therefore there is still hope!

Why shun, then, this possibility of hope? Why shun the possibility of having a greater sense of control – even a potential control that one doesn’t yet have?

Shame and pain

It is shame. It's the sense of shame that comes when people recognize that they have a role in their health and in the conditions in which they find themselves. This shame is threatening. In some ways, it's safer to view oneself as powerless. Acknowledgement of power – even the power to get better – cuts both ways.

Is it a good thing or bad thing? It depends on the perspective. Good things can easily become bad things.

In early psychoanalytic thinking, Freud (1943) called it resistance and considered it one of the hallmarks of a mental health, as opposed to a physical health, condition. Cancer patients, for instance, don’t tend to resist the recommendations of their oncologist, but will rather readily do most anything to beat their cancer. Later Kleinians (cf. Ogden, 1990) focused on patients’ sense of vulnerability and the shame that underlies it. They recognized that any one of us, with whatever health condition we have, can move fluidly in and out of perspectives that we take when interacting with others. Sometimes, we interact in strong and mature ways and so accept feedback as constructive, while other times we become vulnerable and so hear the very same feedback as shaming. As a result of the latter, we can become defensively angry or offended. In such  scenarios, we tend to resist the feedback, come to see the person who is providing it as being judgmental or incompetent or mean. In more contemporary times, Miller & Rollnick (2013), for example, call it ambivalence. Ambivalence captures the fluidity of perspectives that we can all take: we all might recognize the experience of wanting to start an exercise routine and not wanting to at the same time or getting feedback from a healthcare provider about the need to lose weight as a realistic observation or as a criticizing judgment to which one responds with resistance. These common perspectives can be taken with most any health condition. It’s one of the reasons that we might advocate to no longer split up health conditions between mental and physical health, but rather recognize that all health conditions are biopsychosocial in nature.

Nonetheless, we don’t have to use complicated conceptualizations to describe what occurred between my patient and myself when giving her feedback and a recommendation. We might just call it the experience of when good things become bad things. 

References

Freud, S. (1943). A general introduction to psycho-analysis. Garden City, New York: Garden City Publishing.

Miller, S. & Rollnick, W. R. (2013). Motivational interviewing: Helping people change, 3rd edition. New York, New York: Guilfard Press.

Ogden, T. H. (1990). Matrix of the mind: Object relations and the psychoanalytic dialogue. Oxford, UK: Jason Aronson.

 

Date of publication: August 28, 2017

Date of last modification: December 7, 2019

About the author: Dr. Murray J. McAllister is the editor at 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 and to make that empirically-supported pain management more publicly acessible. Additionally, the ICP provides scientifically accurate information on chronic pain that is approachable to patients and their families.

]]>
joemcallister4@gmail.com (Murray J. McAllister, PsyD) Chronic Pain Rehabilitation Programs Mon, 28 Aug 2017 12:32:05 +0000