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 underreported topic in the field of pain management. In fact, we don’t tend to talk about it at all.
There are actually a number of topics that we don’t tend to talk about with each other — whether it’s between professionals in the healthcare community or between healthcare professionals and their patients. While no means a conclusive list, topics that remain off limits to talk about in pain management, and the subsequent alternative topics that we tend to talk about instead, are the following:
- The role that fear-avoidance plays in pain and disability from pain.
- It’s often easier with patients, for example, to talk as if objective findings, such as on MRI scans, are highly correlated with disability.
- It’s often easier, for example, to talk as if stress and mental health problems are solely the consequence of pain.
- The role that opioid dependency has in the long-term use of opioids, even in people who use opioids exactly as prescribed.
- It’s often easier, for example, to talk as if there is a distinct, categorical difference between opioid dependency and addiction, and not one phenomenon that occurs along a spectrum of severity.
- The role that coping has in determining whether someone uses opioids for the long-term management of pain or the role that coping has in whether one experiences pain as intolerable and therefore disabling or not.
- It’s often easier, for example, to talk as if the use of opioids or disability are the natural and inevitable consequence of severe pain for which it is impossible to engage in any other response.
- It’s often easier, for example, to talk as if objective findings on exam, such as on MRI scans, are the sole reason for experiencing pain.
- How pain is not solely the result of things that happen to you through no fault of your own, but rather can also be the result of lifestyle and health behaviors.
- It’s often easier to talk about how to surgically respond to objective findings, such as on MRI, than the obesity and sedentary lifestyle, for example, that can also contribute to low back or joint pain.
These topics are difficult to discuss. They often sound like blaming the patient for the pain that patients have or its problematic impact that pain has on their life. Topics related to the bi-directional relationship between pain, on the one hand, and stress, mental health, coping, lifestyle or health behaviors, on the other hand, all imply that patients have some, if only modest, degree of control. That is to say, if patients are not entirely powerless and helpless to affect their pain and overall well-being, then choices, health behavior, and lifestyle have a role in the onset and maintenance of pain, disability and the use of opioid medications.
This conversation can be had in a productive and hopeful manner — for who doesn’t want to at least potentially, if not actually, have some control over one’s health, including pain, disability and use of opioids? Such control is, after all, a good thing, given the alternative of having no ability to affect one’s health and well-being. Nonetheless, these conversations are sensitive, and can come across as blaming. For after all, if we do in fact have some degree of control over our health and well-being, including pain, disability and use of opioids, then we must be responsible, at least in part, for our health and well-being. If we find ourselves in rough shape, then, are we not, at least in part, responsible for it? Might there not always be in the background an implied criticism of ‘why haven’t you already done something about it?’ If you haven’t, the implied criticism, lurking out there, is ‘maybe, you just want to be in pain [or on disability or on opioids].’ Thus, the acknowledgement that patients may have some degree of control over their health and well-being can take a turn of perspectives in the course of a healthcare visit and come to be seen as a blaming and stigmatizing.
Given the potential for these conversations to go poorly, it is often easier to just not have them and instead focus on those aspects of pain, such as objective findings on exam, that presumably patients have no control over. The focus of office visits thus becomes, not the sedentary lifestyle, or obesity, or ineffective coping responses, but rather the osteoarthritic changes in the joint. Thus, patients leave with only part of the story. The account of the pain, impairment or need for opioid medications as solely the inevitable consequence of a physical ailment is reassuring in its incompleteness. There’s no potential for blame because there’s no capacity for patients to feel, be or do otherwise.
Shame is the underlying factor in these topics that are off limits to talk about. It’s also the driving force in providers and patients finding something else to talk about instead. Shame is the most off limits topic of all the off limits topics.
The Institute for Chronic Pain has a long history of discussing sensitive topics in as approachable ways as we can achieve. We do so with every effort to share and explain information in thoughtful and inclusive ways. We anticipate when topics can be taken in the wrong way and are careful to explain the non-judgmental perspective from which the reader might more accurately understand. We recognize the persistent role of stigma and write about it frequently, as we also write about ways to overcome stigma.
We do so with the intent to educate the pain community — patients, family, and providers — on topics related to pain management and pain rehabilitation. We provide scientifically accurate health information that is approachable to all. Our hope is that the information shared on this site is approachable in two ways: one, that it translates scientifically complex material into information that is readily understandable by all; two, that the information is provided in a sensitive manner, which allows us to talk openly about topics that we need to discuss as a pain community, but that we do so without judgement, criticism or stigma.
We hope that the new content piece on Shame & Pain is helpful to you.
Date of Publication: January 30, 2022
Date of Last Modification: January 30, 2022
About the author: Murray J. McAllister, PsyD, is a pain psychologist, and founder and editor of the Institute for Chronic Pain.
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.
In reaction, it was apparent that the original speaker didn’t quite know how to respond. The challenge seemed to catch him by surprise. He seemed unaware of the common research findings she referenced.
Every year, a “dead zone” appears in the Gulf of Mexico due to a gigantically large algae bloom. This summer, the National Oceanic and Atmospheric Administration predicted the dead zone to be the size of both Delaware and Connecticut combined.
The origins of the dead zone are traceable to over a thousand miles away from the farms of the upper Midwest, and all points further south. The origin, in other words, is farm run-off of nutrients from manure and chemical fertilizers.
Farmers in these states have animals that produce manure. They also use fertilizers on their fields. With time and rainfall, nutrients from these sources seep into the Mississippi and any of its countless tributaries. Making their way eventually to the Gulf of Mexico, these nutrients in the manure and fertilizers combine with the heat of the Gulf to spawn catastrophically large algal blooms that kill everything in its wake.
Well-meaning farmers of the Dakotas, say, or Minnesota, or Wisconsin, may never know of the distant consequences of their actions. As such, it’s nearly impossible, and perhaps even unfair, to hold any one person responsible. How would you ever know, for instance, that this farmer’s fertilizer applications, as opposed to that farmer’s application, led in part to the dead zone that occurs so far downstream in space and time? In general, we can rightly say that farm manure and the application of chemical fertilizer and its subsequent nutrient-rich run-off cause of the dead zone in the Gulf, but for any one particular farmer it is much harder to make a causal attribution.
The Gulf of Mexico dead zone, along with its distant causes, is a perfect analogy to the use of prescription opioids and the resultant opioid epidemic of addiction and overdose.
Commonly, patients and providers assume that pain is the result of an injury or illness, or at least some type of condition in the body. So, for example, when pain in the low back occurs, it’s common to think of it as the result of some type of tweak or mild injury that must have occurred. When it goes on for some time, it’s also is common to want an MRI scan to see “what’s going on” in the back. Such scans often reveal some type of degenerative condition of the spine, which is subsequently considered the cause of the back pain.
As a result, people with pain tend to seek therapies that target the condition in the body by means of physical therapy that strengthens the core, or undergo steroid injections, or even surgery.
The same would be true if the onset of pain occurred in the shoulder or knee or hip. We’d tend to think of the pain as a sign that something is wrong in these joints, something orthopedic in nature, such as arthritis or a problem with a ligament or muscle. We’d tend to seek a scan to help in diagnosis followed by physical therapy, an injection or surgery,
The purpose of these types of assessment and therapies would be to treat the condition that is assumed to be the cause of pain. While doing so, we might take pain medications that act on the brain.
The single most important concern in public policy debates related to the use of opioids for persistent, or chronic, pain is what happens to people with persistent pain when they reduce or taper the use of opioids.
It is often helpful to use analogies and metaphors when explaining complex health topics to patients and their families. This statement is no less true when explaining the complexities of successful pain management. There are many helpful metaphors and analogies, and we have discussed a number of them previously in this blog, such as in the different ways to relate to pain or even experience pain. Another helpful analogy to explain the nature and goals of successful pain management is with the analogy to successful weight management.
It is helpful to liken pain management to weight management because weight management is often better understood by patients and their families. So, let’s review and learn about what it takes to successfully self-manage pain by looking at how it’s similar to successful weight management.
Just this morning, a primary care provider came to consult with me, looking for pain rehabilitation options for her patient with a complex set of needs. Emphasizing the legitimacy of the patient’s pain complaints, the provider detailed a long history of an active substance use disorder. The patient has had multiple urine drug screens positive for both opioids, which weren’t prescribed to the patient, and illegal substances. The provider recounts that the patient has been asked to leave multiple pain clinics for similar aberrant prescription drug use behaviors, all of which are indicative of an inability to control the use of opioids. Given the patient's history, she is at high risk of further exacerbating her addiction and/or death, if opioids continue to be prescribed. Nevertheless, the provider feels as if she has to prescribe opioids to the patient because, "she has legitimate medical conditions with real pain."
Living among the COVID-19 pandemic, with its loss of life and livelihood, and our need to maintain physical distancing to protect ourselves and our communities, we face the dual burdens of stress and boredom. It’s a difficult combination because persistent stress leads to lack of focus and feeling scattered. This distractibility leads to aimlessness and inactivity, which further leads to boredom. In boredom, we have nothing to distract attention away from all the stressors in our lives. Thus, stress can lead to boredom and boredom leads back to stress.
The COVID-19 pandemic continues to impact the world with deaths in the hundreds of thousands and countless more having become ill. To reduce the risk of contagion and death, areas around the world maintain self-quarantining practices and have been doing so now for multiple months.
Sheltering-in-place, or self- quarantining, presents both challenges and opportunities for everyone, including those with persistent, or chronic, pain.
A giant in the field of pain management passed away the other day. It was December 22, 2019, and, to be exact, he was the father of pain management. It is no overestimation to say that he brought pain management into modernity. Ron Melzack, PhD, was 90 years old.
Readers of the Institute for Chronic Pain website recognize it as a source of trusted and transparent information. The Institute for Chronic Pain aims to bring scientifically accurate information on pain and make it approachable to everyone. In so doing, the findings of scientific research is translated to provide understandable and hopefully helpful information to those with persistent pain and their families.
Chronic pain rehabilitation programs are a traditional and effective treatment for chronic pain. Such programs are based on cognitive-behavioral principles that aim to change how you experience pain. By doing so, chronic pain rehabilitation programs help you to a) reduce pain and b) return to meaningful life activities even though some level of pain may persist. In other words, by participating in chronic pain rehabilitation, you change your relationship to chronic pain. You no longer perceive pain as an alarming and disabling condition, but develop the know-how to understand your pain as a benign condition that no longer needs to disrupt or prevent your daily life activities.
Wouldn’t it be good to become so competent at dealing with persistent pain that you no longer are disabled by it?