“But, I have real pain”: When Ethics Collides with Ontology

No doubt, the words of this title have been uttered countless times by countless people with chronic pain. In my work in chronic pain rehabilitation, someone tends to say it to me most everyday. It often comes when discussing the effectiveness of chronic pain rehabilitation, which focuses on coaching people how to self-manage pain. A patient, say, gets referred to our chronic pain rehabilitation program, but the patient believes that it would be better to seek care elsewhere, such as with a spine surgeon, or an interventional pain clinic where spinal injections get performed, or at a clinic that provides long-term prescriptions of opioid pain medications. In such cases, I might make the recommendation that, as long as one is willing to learn how, self-management is an effective treatment option, even in many cases the most effective option. Nonetheless, the patient responds, “But, I have real pain.” The phrase, “I have real pain,” in these instances tends to justify the use of procedural-based medical care, which becomes opposed to seeking self-management based care, as if real pain could never be self-managed and so requires medical or surgical procedures or narcotic pain medications.

Still other times, the phrase “But, I have real pain” gets expressed when I talk to patients about the role of the nervous system in the cause of chronic pain. In chronic pain rehabilitation, we routinely discuss this role of the nervous system because it provides a scientifically accurate rationale for why self-management is effective: the self-management strategies that patients learn in chronic pain rehabilitation reduce pain and increase coping by targeting the nervous system and making it less and less reactive over time. So, we subsequently review with patients why it’s important to therapeutically target their nervous systems: it’s because pain is the product of a two-way communication between the nerves in the painful area and the spinal cord and brain. It’s not uncommon for patients to react to such discussion by retorting, “But I have real pain.” This response expresses disagreement with the overall conversation and alludes to a different way that they understand the nature of their pain. People often go on at this point to explicitly state their understanding of, say, back pain by emphasizing an orthopedic model of pain – something, like, “My surgeon said it was because my discs are degenerating.”

It’s not just patients who say it too. Providers commonly use the phrase as well. Most often, I suppose, providers say a variation of it to patients as a form of reassurance. “I know you have real pain” is a frequently necessary form of reassurance, letting patients know that they are believed. Countless times in case conferences, too, where the overall plan of care is discussed among a team of different providers, the phrase gets used, particularly when a case is discussed in which the orthopedic basis of pain can’t be found. An all-too-common example might be a patient who presents with chronic low back pain, but the MRI of the lumbar spine shows nothing that might reasonably be the cause of pain. In such cases, providers often profess, “I know he [i.e., the patient] has real pain, but the scans are normal…”

meaning of painWhat, though, does this phrase really mean? When we use the phrase ourselves or when we hear it, we tend to respond in the course of the conversation as if nothing out of the ordinary was just said. That is to say, we understand the phrase and subsequently move on without ever giving it a moment’s notice. But, if we were ever stopped and asked to explain what in fact we mean by the phrase, it gets a little difficult to actually put it into words.

What does it mean?

We might first notice that in the phrase, “But I have real pain,” the use of the word “real” would seem to be drawing a contrast. Specifically, at first blush, it seems to be contrasting the present “real pain” with pain that is… what… not real? Therein lies the problem. What might we ever mean by “unreal pain”? It’s a phrase we never use, not at least at any time I have ever heard or come across, and even if we did it would seem unclear as to what we might mean.

Pain is an experience that we either have or don’t have. Sometimes, we have a little pain and sometimes we have a lot of pain, but in either case, it is something we either have or don’t have. In what circumstances might we ever have a pain that is unreal, which doesn’t mean we have actual pain, but means something other than having no pain? It’s as if “unreal pain” lies somewhere within a never-never land between either having pain and not having pain.

So, on the face of it, it doesn’t seem to make sense to emphasize that one’s pain is “real” if the contrast that we draw by using it doesn’t make any sense. In other words, to contrast “real pain” with something that doesn’t make sense, something that’s really a nothing, is to say that we don’t really need to use the adjective “real” in the first place.

We might thus conclude, all pain is pain and call it a day.

Not the end of the story

Perhaps our analysis thus far is mistaken. Specifically, we may have mistakenly assumed that words have meaning only when they refer to something. In our analysis, we recognized that the adjective “real” in the phrase “real pain” appears to contrast with something, but we can’t find anything that the contrast “unreal pain” refers to. So, we came to the conclusion that the adjective “real” adds no value. Real pain is just pain, we concluded, so we might as well drop the adjective.

This tack would likely make us all uncomfortable for it really does seem like we are Real Painmeaning something important when we say, “I have real pain.” So, to keep looking for what we might mean by the phrase, we might recall Wittgenstein’s famous dictum that the meaning of words lie in their common everyday use (1953). He recognized that language doesn’t have universal referents in all times and places, but rather language can be and is more idiosyncratic than that. Words have particular uses in particular times and places. Language, of course, doesn’t run amok because people are similar enough and live in similar enough ways that we more or less can understand each other, despite the particularities of word uses. So, the meaning of words lie in their use and, sometimes, this use refers to things, but sometimes words have meaning in other ways. Perhaps, the phrase “real pain” is meaningful in one of these other ways.

I think we hit upon this use earlier in the introduction to this essay. The phrase “real pain” doesn’t refer to some special type of pain as much as it’s used to provide reassurance that others believe that one in fact has pain.

No one wants to be called or even considered a faker. There are times when others, such as family members or healthcare providers or employers or defense attorneys might consider whether the person who reports having pain is really faking that they have pain. In such circumstances, patients might assert, “But I have real pain” or still others might come to their defense by asserting that the patients have “real pain.”

Thankfully, such situations are not daily affairs for most people with chronic pain or for most providers in pain clinics. However, the phrase gets used much more commonly, even, as I suggested in the introduction, almost daily. So, there must be other uses – other ways of gaining reassurance by the phrase, “real pain,” even when no one is accusing anyone of faking.

Maybe, the use of the adjective provides a sense of legitimacy to one’s pain. In this way, perhaps it really is drawing a contrast between types of pain: pain that society tends to see as legitimate and pain that society doesn’t. What people defend against, then, when they use the phrase, “But I have real pain,” is stigma.

When stigma raises its ugly head

Patients and providers alike can tend to use the phrase “real pain” when emphasizing the legitimacy of one’s pain and any problems in functioning associated with it. “Real pain” is thus the contrast to the “it’s-all-in-your-head” type of pain. If you have trouble coping or are disabled from “real pain,” you get a pass. People tend to understand and allow you to stay home from work or allow you to be down about it and have a good cry. If, however, you have trouble coping or are disabled from the “it’s-all-in-your-head” type of pain, well, there’s no free pass for you. It’s time to ‘buck up and deal’ instead. No one excuses it when you stay home from work or sees your depressed tears.

Like “real pain,” though, the “it’s-all-in-your-head” type of pain is a bit slippery when attempting to define it. We all know what it means when we say it or hear it, or at least we think we do. Nonetheless, it’s hard to actually put it into words.

We tend to associate the “it’s-all-in-your-head” type of pain with stress-related pain. In chronic pain rehabilitation, we routinely review the importance of stress management when it comes to self-managing pain, but it’s not uncommon for patients to dismiss the relevance of the topic with the assertion, “But I have real pain.” Indeed, at times, we might be tempted to think they are on to something. For, at first blush, pain caused by stress and tension doesn’t seem as real as pain that occurs in relation to clearly identifiable tissue damage. Thus, our initial reaction is that the pain we feel when stepping on a nail seems somehow more real than the gut ache of the child who’s nervous about starting school tomorrow or the headache we might have after a bad day at work. From this light, real pain is pain caused by tissue damage, something that has nothing to do with stress. Stress is involved in the other type of pain, that not-as-real pain, which we refer to as the “it’s-all-in-your-head” type of pain.

An impasse?

But we might then think about what we just said for a minute. In so doing, it might slowly dawn on us that we’ve had a tension headache before, as have most people who have ever been alive on earth. Those tension headaches seem pretty real – that is, pretty painful. The telltale signs of a tension headache are descriptions like “pounding” and “vice-like.” Those descriptions even sound painful… truly painful… or might we say like real pain.

And of course it is. Anyone who has ever had a tension headache knows that it is really painful. You have a long and difficult day and as a result your head is pounding. You reach for the ibuprofen and lay down on the couch or just go to bed outright. You can’t really argue that a tension headache isn’t “real pain.”

Even in cases where pain is associated with identifiable tissue damage, stress makes it worse. When you stub your toe in the course of a lengthy argument with your spouse, the very “real pain” you have hurts worse than when you stub your toe during a really fun party or when watching an exciting football game. It doesn’t take a rocket scientist to tell you that stress makes the “real pain” of chronic conditions worse too. All it takes is the average person with rheumatoid arthritis. Here we have a condition that causes “real pain” and which is associated with clearly defined tissue damage and stress still makes that “real pain” more painful.

pain is painSo, now what do we do? We thought we were on to something. We thought we had found the meaning of the phrase “real pain.” We thought it’s that kind of pain which is associated with tissue damage and which differs from the stress-related “it’s-all-in-your-head” type of pain, but we now see that stress-related pain produces just as real pain as “real pain.”

We thus seem stuck. It seems so obvious that we know what it means when we use the phrase “real pain,” but it seems like we can’t define it. Can we, then, say that we know what it means?

Maybe, we have just come full circle (pun intended) to the tautology that all pain is pain.

References

Wittgenstein, L. (1953). Philosophical Investigations. New York: MacMillan.

 

Author: Murray J. McAllister, PsyD

Date of last modification: 9-20-2015

The Biopsychosocial Nature of Pain

Contexts matter. The same joke might go over in very different ways, depending on whether it’s told by a comedian in front of an audience at a comedy club or told by an applicant in the middle of a job interview. An action done over and over again might be considered in one context an admirable example of perseverance in the face of adversity, whereas in another context it might be considered an exercise in futility.

Contexts matter in health too. The onset of a health condition might have two very different trajectories based on the contexts in which its onset occurs. Take, for example, a flu infection. It might be a nuisance for someone who is otherwise healthy, whereas the same infection might be disastrous for an elderly person or for a person whose immune system has been compromised due to undergoing chemotherapy. The overall presentation of flu in these cases is different because of the context. They each share a common precipitating cause – the influenza virus, but their illness is manifested differently due to the contexts that they don’t share.

In this light, we have to acknowledge the importance of context as a cause of health problems. In the common influenza examples described above, the context plays just as an important causal role as the influenza virus itself. Indeed, it’s the context that determines whether the flu will be either a nuisance or life threatening. In other words, the particularities of the person who has the health condition – the host, if you will — have a causal influence on the overall ways that the condition presents.

Moreover, it’s hard to imagine a health condition that occurs in isolation of the person who has it. As such, we must acknowledge that health conditions almost always have multiple causes – the precipitating event and how it interacts with the particularities of the person who has it and experiences it.

The common reductionistic view of health conditions

In our society, we tend to forget this simple fact about health. We tend to equate a health condition with a single precipitating cause and explain the differences across people who have the same condition by asserting differences in the severity of the precipitating cause. So, in the influenza example above, we tend to explain differences in severity of illness by asserting that one person’s influenza infection (i.e., the precipitating cause) must be due to a more virulent strain than another person’s flu infection.

As a society, we take this stance all the time in chronic pain management. We assume that people with high levels of pain and disability always must have had more severe precipitating injuries than those who have less pain and disability. Of course, sometimes it is true. Someone who breaks her neck in a motor vehicle accident may result in a high level of pain and disability.

Reductionism leads to stigma

Yet, not everyone with pain, perhaps not even a majority, fit neatly into this simple equation that differences in pain and disability are always explainable by differences in the precipitating event or cause.

It’s not uncommon for people to have excruciating pain and severe disability from moderate injuries, such as a fall from a ladder or stairs, or mild injuries such as a muscle strain from lifting something or simply bending over to pick something light off the floor. It’s even common for people to have severe pain and impairment without a precipitating injury or illness at all.

These people don’t fit into our common assumption that severity of pain and disability must always correspond with severity of precipitating injury or illness. Unfortunately, what happens to these people is that they get stigmatized. Others invalidate them by doubting the legitimacy of their pain and disability. “All you did was to bend over and pick up your hammer off the ground,” they might say, “How can you have so much pain that you can’t work?”

But what if there is a rational explanation for their pain and disability?

Chronic pain is multifactorial

We need to recognize that pain is more complicated than we tend to think it is. There is always more than one factor that initially causes pain and always more than one factor that maintains pain on a chronic course. A good place to start to recognize these facts are in the context in which precipitating causes occur.

In healthcare, we tend to categorize the contexts in which health conditions occur in three ways. They are biological, psychological and social contexts.

The ‘bio-‘ in the biopsychosocial

The biological contexts are the health of the person in terms of his or her bodily systems – the nervous system, the endocrine or immune systems, for instance. In the cases above, we described two people with the same precipitating event, an influenza infection, and saw how in one person the flu was a minor illness and in another it became a life-threatening illness because of differences in their immune systems. Whether healthy or compromised, the immune systems of each have an influence on the overall presentation of the illness. Indeed, in the case of the person with the compromised immune system, it is equal in importance to the precipitating cause of the influenza infection itself: it’s what makes the infection life threatening.

Similarly, the health of a person plays a role in the onset and chronic maintenance of pain. We know, for instance, that certain conditions make the onset of pain more likely or the transition from acute pain to chronic pain more likely. Obesity is an example. Those who are obese are more likely to develop low back pain (Shiri, et al., 2009), hip and knee pain (Andersen, et al., 2003). Oftentimes, the cause of their low back, hip or knee pain gets attributed to osteoarthritis, but osteoarthritis isn’t necessarily a discrete illness. It’s typically considered overall wear and tear that comes with age, or in the case of those who are obese, the extra weight that those joints must bear. Thus, obesity can be a cause of a new episode of pain.

The overall health of the nervous system also plays a role in the development of chronic pain. We know that people who have been subjected to prolonged stress are more likely to develop a new episode of pain and develop chronic pain once pain occurs. Examples are people who have experienced trauma or who are depressed or anxious or experiencing other life stressors (Croft, et al., 1995; Linton & Bergbom, 2011; McBeth, et al., 2007; Pincus, et al., 2002; Raphael & Widom, 2011). It’s not because they are any more accident-prone or illness-prone. Injury or illness, we might say, is an equal opportunity event. Rather, it’s that nervous systems under prolonged stress tend to have lower thresholds for stimuli to provoke pain and tend to become increasingly sensitive once a new episode of pain occurs.

Obviously, there are countless facets about the overall health of people that can play causal roles in either the development of pain or in the transition from acute to chronic pain. These biological factors provide a context in which a precipitating event, such as a painful injury or illness, occurs and they influence how the pain of the precipitating event is manifested.

The ‘psycho-‘ in the biopsychosocial

The psychological contexts are the psychological conditions and stressors that impact the nervous system, as well as health beliefs and behaviors that might impact the experience of pain and how people react to pain once becoming injured or ill. As suggested above, those who have struggled with trauma, anxiety or depression are at greater risk for developing pain and especially transitioning from acute to chronic pain once having an acute injury or illness. In other words, the state of the nervous system at the time of the acute injury or illness, especially when it’s under prolonged stress, can have a causal role in the development of subsequent chronic pain. In this way, we can rightly say that anxiety and depression can be one of the many multifactorial causes of chronic pain.

Indeed, in people who subsequently develop chronic pain, it’s actually quite common to have experienced trauma, anxiety and/or depression prior to the acute onset of pain (Knaster, et al., 2012; Magni, et al., 1994) and these emotional disorders interact synergistically with biological causes of pain to heighten the overall experience of pain (Domnick, Blyth, & Nicholas, 2012). These factors can tip the scale, as it were, to transition acute pain into chronic pain, following a precipitating painful injury or illness.

Other psychological factors, besides emotions, can exercise a causal role in the development of pain and chronic pain. Beliefs about pain and prior learning about pain can influence how pain is experienced and what we go on to do about it once having it (Arnstein, et al., 1999; Edwards, et al., 2011; Linton, Buer, Vlaeyen, & Hellsing, 2000; Nahit, et al., 2003). Some beliefs about pain and what we are supposed to do about it are helpful. They can reduce the intensity of pain or promote healing or recovery in the case of acute pain. They can also promote coping well with pain and remaining active in the case of chronic pain. Some beliefs, however, are not so helpful and can lead people to inadvertently experience more pain or do things that don’t promote recovery or good coping. Examples are catastrophizing, fear-avoidance beliefs, and engaging in illness behaviors (e.g., persistent resting and activity avoidance).

There are countless more psychological factors that can influence how pain and disability are manifested. Nonetheless, the point here is to recognize that the context in which pain occurs has an influence. It has a causal role – even if it’s not the initial or precipitating cause – in how we experience pain and what we go on to do about it once becoming injured or ill.

The ‘social’ in the biopsychosocial

The social contexts are those social conditions and stressors that can impact the nervous system or otherwise affect the trajectory of people’s health. These aspects widen the context further, beyond the biological and psychological make-up of the individual. They involve the make-up of the individual’s surroundings in terms of their relationships and social resources. We know that these factors too have a causal influence on health, pain included.

To illustrate the point, let’s take an all-too-common example that occurs within our field of chronic pain management. Suppose you see a woman who has chronic daily headache. Outside your clinic, she’s been treated for many years with medications and interventional pain procedures. She tells you that she’s been told she has cervicogenic headache, which means that her headache is thought to be due to structural problems in the cervical spine (i.e., neck). On MRI, she does in fact have modest degenerative changes, but these findings are common in people of her age. As such, we might consider this way of understanding her pain as a biomedical conceptualization. You, however, are a provider who understands chronic pain from a biopsychosocial conceptualization and so you ask, in your initial evaluation, about her psychological health as well as about her relationships, home life, financial stressors, and about where she lives in the community. At first, she’s a little taken aback. No one, she tells you, has asked about such things, at least not in the depth that you go into. She also doesn’t understand, she says, what all of this has to do with her pain. With budding trust, however, she begins to tell you that she has been involved in a domestically violent relationship for many years.

Might it not be reasonable to suppose that the persistent stress of physical, emotional and sexual violence plays a causal role in her headache pain? How could it not? Such prolonged stress would have to adversely affect her nervous system and thereby exacerbate her chronic pain. Even if, as has happened to her, we adequately treated any ‘cervicogenic’ aspects of her pain, wouldn’t it be insufficient to adequately manage her pain? We have to address the social causes of her pain condition as well.

Domestically abusive relationships are not the only type of persistently stressful relationship that can affect the trajectory of chronic pain. Care-taking relationships are also chronically stressful: care-taking an elderly parent with dementia, care-taking a spouse with cancer or a spouse disabled by a stroke, care-taking a child with special needs. Chronic marital conflict, short of domestic abuse, might be another. The absence of relationships can also be a chronic stressor in the form of loneliness that can influence the development of pain (Jaremka, et al., 2013).

These chronic social stressors affect the nervous system, likely making it more sensitive to stimuli, and thereby exacerbating pain, as well as sapping the ability of such people to cope with the pain that they experience. As such, social stressors have a causal influence on pain, even if they are not the initial precipitating cause.

We also know that poverty and living in dangerous neighborhoods can affect overall health as well the onset of pain and its chronicity (Gooseby, 2013; Ulirsch, et al., 2014). These social-based stressors adversely affect the nervous system and thereby adversely affect pain levels as well.

We know too that lack of access to adequate healthcare affects the trajectory of pain once having an acute injury or illness. Lack of insurance or being underinsured can often lead to emergency room based care or other stop-gap measures that are poorly suited for chronic conditions. Lack of availability of effective chronic pain management, even for those with adequate insurance coverage, can also play a role (Prunuske, et al., 2014). For example, the most effective form of chronic pain management, interdisciplinary chronic pain rehabilitation programs, is not widely available in the United States (Schatman, 2012). As such, many people with chronic pain simply do not have ready access to them and so must rely on less effective means to manage their pain. These social factors thus influence the pain levels of an individual’s condition.

Conclusion

Like all health conditions, pain is multifactorial. Meaning, multiple factors go into causing pain and maintaining it on a chronic basis. In our society and healthcare system, we tend towards understanding pain in reductionistic terms – understanding pain as solely the result of the event that precipitated it – an injury or illness. This reductionistic understanding leads to the belief that severity of pain and disability is solely the result of the precipitating event. So, if pain and disability are severe, there must have been a severe injury or illness. Most people’s pain or chronic pain, though, simply don’t fit neatly into this reductionistic model. They can have high levels of pain and disability in the absence of severe injuries or illnesses. As a result, they often get stigmatized: others doubt the legitimacy of their pain and disability. However, there is a rational explanation for these people’s pain and disability. Their pain, as with all people’s pain, is not solely caused by the precipitating event that started it all. Pain is multifactorial: there are multiple causal influences to pain in terms of the overall contexts in which injuries and illnesses occur. The biological, psychological, and social health of these contexts play a part in the onset and chronic maintenance of pain. These causes provide a rational, accurate and legitimate explanation for how pain and chronic pain become manifested in individuals.

(For more advanced study of the biopsychosocial nature of chronic pain, please see Gatchel, et al., (2007). The biopsychosocial approach to chronic pain: Scientific advances and future directions. Psychological Bulletin, 133(4), 581-624. doi: 10/1037/0033-2909.133.4.581)

References

Andersen, R. E., Crespo, C. J., Bartlett, S. J., Barthon, J. M., & Fontaine, K. R. (2003). Relationship between body weight gain and significant knee, hip and back pain in older Americans. Obesity Research, 11(10), 1159-1162.

Arnstein, P., Caudill, M., Mandle, C. L., Norris, A., & Beasley, R. (1999). Self-efficacy as a mediator of the relationship between pain intensity, disability and depression in chronic pain patients. Pain, 80(3), 483-491.

Croft, P. R., Papageorgiou, A. C., Ferry, S., Thomas, E., Jayson, M. I., & Silman, A. J. (1995). Psychologic distress and low back pain: Evidence from a prospective study in the general population. Spine, 20(24), 2731-2737.

Domnick, C. H., Blyth, F. M., & Nicholas, M. K. (2012). Unpacking the burden: Understanding the relationships between chronic pain and comorbidity in the general population. Pain, 153, 293-304.

Edwards, R. R., Cahalan, C., Mensing, G., Smith, M., & Haythornwaite, J. A. (2011). Pain, catastrophizing, and depression in rheumatic diseases. Nature Reviews Rheumatology, 7, 216-224. doi: 10.1038/nrrheum.2011.2

Gooseby, B. J. (2013). Early life course pathways of adult depression and chronic pain. Journal of Heath and Social Behavior, 54(1), 75-91.

Jaremka, L. M., Fagundes, C. P., Glaser, R., Bennett, J. M., Malarkey, W. B., & Kiecolt-Glaser, J. K. (2013). Loneliness predicts pain, depression, and fatigue: Understanding the role of immune dysregulation. Psychoneuroimmunology, 38(8), 1310-1317.

Knaster, P., Karlsson, H., Estlander, A., & Kalso, E. (2012). Psychiatric disorders as assessed with SCID in chronic pain: The anxiety disorders precede the onset of pain. General Hospital Psychiatry, 34(1), 46-52.

Linton, S. J & Bergbom, S. (2011). Understanding the link between depression and pain. Scandinavian Journal of Pain, 2(2), 47-54.

Linton, S. J., Buer, N., Vlaeyen, J., & Hellsing, A. (2000). Are fear-avoidance beliefs related to inception of an episode of back pain? A prospective study. Psychology & Health, 14(6), 1051-1059.

Magni, C., Moreschi, C., Rigatti-Luchini, S., & Merskey, H. (1994). Prospective study on the relationship between depressive symptoms and chronic musculoskeletal pain. Pain, 56(3), 289-297.

McBeth, J., Silman, A. J., Gupta, A., Chiu, Y. H., Morriss, R., Dickens, C., King, Y., & Macfarlane, G. J. (2007). Moderation of psychosocial risk factors through dysfunction of the hypothalamic-pituitary-adrenal stress axis in the onset of chronic widespread musculoskeletal pain: Findings of a population-based prospective cohort study. Arthritis & Rheumatism, 56, 360-371.

Nahit, E. S., Hunt, I. M., Lunt, M., Dunn, G., Silman, A. J., & Macfarlane, G. J. (2003). Effects of psychosocial and individual psychological factors on the onset of musculoskeletal pain: Common and site-specific effects. Annals of Rheumatic Disease, 62, 755-760.

Pincus, T., Burton, A. K., Vogel, S. , & Field, A. P. (2002). A systematic review of psychological factors as predictors of chronicity/disability in prospective cohorts of low back pain. Spine, 27(5), E109-E120.

Prunuske, J. P., St. Hill, C. A., Hager, K. D., Lemieux, A. M., Swanoski, M. T., Anderson, G. T., & Lutfiyya, M. N. (2014). Opioid prescribing patterns for non-malignant chronic pain for rural versus non-rural US adults: A population-based study using 2010 NAMCS data. BMC, 14, 563.

Raphael, K. G. & Widom, C. S. (2011). Post-traumatic stress disorder moderates the relation between childhood victimization and pain 30 years later. Pain, 152(1), 163-169. Doi: 10.1016/j.pain.2010.10.014

Schatman, M. E. (2012). Interdisciplinary chronic pain management: International perspectives. IASP Pain Clinical Update, 20(7).

Shiri, R., Karppinen, J., Leino-Arjas, P., Soloviev, S., & Viikari-Juntura, E. (2009). The association between obesity and low back pain: A meta-analysis. American Journal of Epidemiology, 171(2), 135-154. doi: 10-1093/aje/kwp356

Ulirsch, J.C., Weaver, M. A., Bortsov, A. V… & Mclean, S. A. (2014). No man is an island: Living in a disadvantaged neighborhood influences chronic pain development after motor vehicle collision. Pain, 155(10), 2116-2123. Doi: 10.1016/j.pain.2014.07.025

Author: Murray J. McAllister, PsyD, LP

Date of last modification: 5-3-2015

Ending the Stigma of Pain: A New ICP Webpage

The stigma of chronic pain is personally hurtful. It is a negative judgment of you that others make. Specifically, stigma occurs when others judge you simply for being who you are – someone with chronic pain. You are looked down upon because of it. As such, stigma is more than hurtful. It’s shaming.

As we have seen from previous posts, stigma can also prevent those with chronic pain from getting the help that is most effective – chronic pain rehabilitation programs that focus on helping patients to successfully self-manage pain and live well despite having pain. Understandably, people with chronic pain don’t want to be blamed for their condition and so it is common to defend against the shame and blame of stigma by holding onto the belief that there is nothing they can do about their pain. The implication is that if there is nothing that they can do about it, they can’t rightfully be blamed for it. As a consequence, stigma can come to prevent people with chronic pain from acknowledging that it is possible to self-manage pain successfully – that there is something they can do about it. So, they come to be reluctant to participate in a treatment that teaches them how to do it.

Ending stigma thus has paramount importance. All stakeholders in the field have to take it on and foster change in how those with chronic pain are seen by society. We all need to find ways to overcome the negative judgment that society places on those with chronic pain.

To this end, the Institute for Chronic Pain (ICP) site has a new webpage on how to end the stigma of chronic pain. Using lessons from the past, we discuss ways to approach stigma and resolve it on both a personal level and, perhaps, even on a societal level.

Please visit our latest webpage: How to End the Stigma of Pain.

Why the Stigma of Chronic Pain Remains

Attempts to challenge the stigma of chronic pain often fail. Despite arguments from providers and patients alike, stigma remains a persistent problem.

Attempts to challenge stigma typically defend those with chronic pain by denying that chronic pain has anything psychological about it. Of course, there are various ways to assert this argument, but the most common is apt to be some version of the ‘It’s not in my (or their) head.’ As such, the initial premise of the argument is the denial that there is any relationship between chronic pain and any potential psychological aspects of it. The next premise tends to assert that chronic pain is instead a medical condition. The conclusion is that we shouldn’t stigmatize those with chronic pain just as we don’t stigmatize anyone else with a bona fide medical condition.

More succinctly, society tends to see the psychological aspects of chronic pain as worthy of judgment and so we, as a field, tend to attempt to get rid of the stigma of chronic pain by trying to get rid of the psychological aspects of chronic pain.

How often do you hear patients and providers alike asserting that the patient has ‘real pain,’ which is immediately followed by the denial of ‘it is not in my (or his or her) head’? In effect, the argument assumes that real pain has no psychosocial aspects to it at all. With this premise, the argument attempts to refute stigma.

At best, this argument and ones similar to it only temporarily quiet the stigma that our society places on those who are living with chronic pain.

The reason, I think, is that the premise that chronic pain can be void of anything psychological is false. As much as we might deny it, chronic pain is in part a psychological condition. Most people know it too, which is why the stigma of chronic pain keeps coming back.

The experience of pain is the product of the severity of any condition that might underlie the pain, the sensitivity of the nervous system, and how well the person with pain is coping. Coping is inherently a psychological issue. The sensitivity of the nervous system is also a psychological issue.

A denial of these realities only works for so long. Reality has a way of reappearing.

Try as we might, then, we can’t get rid of the psychological aspects of chronic pain. Chronic pain just is one of those health conditions that walks on both sides of the fence: it is inherently a condition that has both medical and psychological aspects.

What thus becomes clear is that the essence of the problem of stigma when it comes to chronic pain is that as a society we tend to stigmatize all things psychological and so by association chronic pain becomes stigmatized too.

So, what do we do if we want to get rid of the stigma for those living with chronic pain? Maybe we stop doing it in a roundabout way and hit it head-on. That is to say, let’s stop trying to get rid of stigma by trying to rid chronic pain of its psychological aspects. Rather, let’s try to get rid of stigma by challenging this association between stigma and all things psychological.

Why is having a condition that’s in part psychological in nature so bad? Why do we assume that it is worthy of criticism or judgment? Like many things in life, it can be hard to cope with chronic pain. Why must someone who is struggling to cope with chronic pain be shunned?

Compassion seems a much more appropriate response.

Author: Murray J. McAllister, PsyD

Date of last modification: 10-26-2014

 

Overcome Social Stigma of Chronic Pain

The Institute for Chronic Pain website has a new article on the social stigma of chronic pain. It explains the nature of social stigma and challenges both providers and patients to  take the difficult steps to overcome it.

If it challenges and inspires you, please share it with your network.

Click here to read it.

Fear-Avoidance of Pain

There’s a divide between chronic pain experts and their patients that rarely gets crossed. The divide centers on the issue of fear-avoidance. On one side of the divide, among chronic pain experts, fear-avoidance is one of the most well established facts about chronic pain and chronic pain-related disability. Over more than a decade, researchers and clinicians have extensively studied fear-avoidance and almost every month another study on it gets published in the professional journals. As such, it’s a well established fact among chronic pain experts. On the other side of the divide, it’s rare to find a chronic pain patient who has ever heard of it.

It’s a strange state of affairs that goes on between chronic pain providers and their patients. We know something important about chronic pain and chronic pain-related disability and our patients don’t know it. And yet, it goes unsaid. You’d think that everyone involved would want it shared. But, still, it doesn’t.

While I’ve never seen a study that could shed light on why the divide occurs, I have some thoughts about it. There are actually two reasons, but they go hand in hand.

First, we don’t share what we know about fear-avoidance because we aren’t very good at teaching patients (and maybe even the public) about what chronic pain is. Patients (and the public) commonly consider the sensation of pain as solely and only a physical sensation. As such, it’s thought that psychological aspects have very little to do with the sensation of pain itself. At most, the psychological aspects of pain are thought of as consequences of pain – that the distressed thoughts and moods, like fear, and the behaviors that go along with them are really just reactions to the physical sensation of pain. As chronic pain experts, though, we know that it isn’t true. While it requires and involves a physical sensation, to be sure, the experience of pain also inherently involves unpleasant and distressing thoughts, feelings, and behaviors. Any explanation of fear-avoidance requires this understanding of chronic pain – that it is more than simply and only a physical sensation. However, it is hard to communicate this notion. It’s difficult to teach patients to expand their understanding of chronic pain and incorporate its inherent cognitive, emotional, and behavioral components. Moreover, besides being hard to communicate, it has to be communicated well – with compassion and sensitivity — in order for most patients to succeed in understanding the true nature of chronic pain. This point leads us to the second reason for the great divide between chronic pain experts and their patients.

Second, to be frank, there can be a little pushback from patients when it comes to explaining that chronic pain is more than simply a physical sensation and that it in fact involves psychological as well as medical aspects. Frank discussion of the inherent psychological aspects of chronic pain can tend to get inhibited because it opens up the possibility of critical judgment and stigma by others. It’s safer to insist that chronic pain and its related difficulties are solely and only physical because in our society it is acceptable if you struggle with a medical condition. It’s not acceptable to acknowledge that you’re psychologically struggling. Consequently, and understandably, patients can resist coming to understand how chronic pain is inherently both a medical and a psychological condition – what healthcare providers call a biopsychosocial condition.

This resistance reinforces any unwillingness of healthcare providers to bring up the notion of fear-avoidance because it assumes a foundational understanding that chronic pain is both a medical and a psychological condition. To convey the latter, though, as indicated, it’s hard work. To succeed in doing so, it requires a high level of skill on the part of healthcare providers – a degree of interpersonal compassion and sensitivity. It also involves a level of interpersonal skill on the part of the patient – the ability to develop a safe, trusting relationship in which the patient can be assured that no critical judgment will occur.

Fear-avoidance is therefore a sensitive issue, which challenges the skills of both chronic pain experts and patients, if we are to ever bring it up. We have to admit that providers have a hard time talking about it and patients tend to have a hard time hearing about it. So, we avoid the topic. It’s a bit ironic: we avoid discussions of fear-avoidance. The great divide in knowledge and understanding subsequently continues.

If you’re game to talk about it, though, I’m game. Let’s give it a try.

There’s significant benefit if we can pull this off. As chronic pain experts, we know that fear-avoidance is one of the most important factors that lead to chronic pain-related disability (Crombez, Vlaeyen, Heuts, & Lysens, 1999; Leeuw, et al., 2007; Vlaeyen & Linton, 2012). If you can learn about it, and acknowledge it when it occurs, then you can begin to challenge it and change it. It’s not an exaggeration to say that overcoming fear-avoidance is essential if you want to self-manage pain successfully. It’s really that important. So, let’s talk about it. Ready?

Fear-avoidance defined

Pain is a naturally unpleasant and distressing experience. We don’t laugh or jump up and down for joy when in pain. Rather, we cry and become alarmed. Pain captures our attention and our thoughts become concerned about it. We think about what’s causing it and how to get rid of it. Emotionally, we are alarmed and distressed. These cognitive and emotional aspects to the experience motivate us to get help, stop the pain, and avoid it again in the future.

These ways of experiencing pain and reacting to it are not chosen or the result of intentional decisions. When in pain, we don’t intentionally decide to perceive it as unpleasant or distressing, and subsequently begin to cry and emotionally become alarmed. Moreover, we don’t typically choose how we are going to think about pain and how we might make sense of it. Rather, pain just is inherently emotionally distressing and alarming. As such, even though we can tend to think of it as solely a physical sensation, we cannot wholly divorce the sensation of pain from how we perceive it, cognitively and emotionally. The cognitive and emotional distress is just part and parcel of the experience of the sensation. The whole experience also involves behaviors that are indicative of being in pain – the grimacing, verbal expressions, guarding, and the like. None of these behaviors are typically thought of as chosen behaviors. Subsequently, we might say that all these cognitive, emotional, and behavioral aspects to the experience of pain are automatic or reflexive.

Let’s take an example. Consider what happens when you burn your hand on the stove. Behaviorally, you reflexively pull your hand away and guard it. Tears might come to your eyes and you might exclaim all sorts of utterances. Cognitively, your thoughts are focused on the pain and what to do about it. Emotionally, you are upset and alarmed. Your emotional distress motivates you to act. It also motivates you to be careful next time. Later, you’ll apt to be apprehensive and take steps to avoid getting burned again.

Experts in chronic pain management call this constellation of cognitive, emotional, and behavioral components to the experience of pain, “fear-avoidance.”

Fear-avoidance is all well and good in an acute injury. It’s an adaptive and helpful response. It helps us to get better and avoid future injury.

What’s good for an acute injury, however, is not always good for chronic pain. Persistent fear-avoidance in chronic pain leads to persistent emotional distress and impairments in activities. In other words, chronic fear-avoidance is one of the most important factors that lead people with chronic pain to become disabled.

If, like the alarming nature of acute pain, chronic pain remains alarming indefinitely, then the natural reaction to pain is to always try to stop it or get rid of it. Since, though, the pain is chronic, there’s not much the typical chronic pain patient can do to stop it. Of course, there are medications and various kinds of therapies, but at best these approaches only reduce pain. It can then seem like the only thing that’s left to do is to stop doing activities that make pain worse.

If work makes your pain worse, and you struggle to tolerate it, coming home distraught by the pain night after night, then it can seem reasonable to conclude that maybe you shouldn’t go to work anymore. If the pain of sitting in the bleachers at your child’s sporting event or musical performance was too excruciating the last time you went, then you might find yourself making the tough decision to stay home tonight instead. Over time, you can come to anticipate when pain is going to become too overwhelming and consequently avoid those activities too. You end up declining invitations to the extended family reunion, the weekend trip that includes the long car ride, the outing to the amusement park, or other similar activities. All these examples are examples of fear-avoidance of pain and its associated activities.

Notice that inherent in all these examples is that pain is something that’s concerning and distressing, which then leads to not doing the activities that bring on pain. For after all, if, when doing some activity, the pain wasn’t alarming, then we’d say the pain was tolerable and we’d keep doing the activity. The pain would still be there, of course, but we’d do the activity without any concern or sense of alarm about it. In the examples above, though, the pain involved in the activities is distressing and alarming and so the activities are stopped. In the short hand of pain experts, these examples involve fear-avoidance of pain and the activities associated with pain.

What it all comes down to is that, when it comes to chronic pain-related disability, the cognitive, emotional, and behavioral aspects of the experience of pain are the most important components, not the actual physical sensation. It’s the sense of alarm that is the tipping point and stops people from doing things. Of course, the sensation plays a role, but without the sense of alarm – the cognitive and emotional ways of perceiving the sensation – the sensation itself would be tolerable and there’d be no need to avoid or otherwise stop the activity.

Now, here is where patients can start to get a little uncomfortable.

Common patient reactions to the notion of fear-avoidance

When first hearing about fear-avoidance, a common reaction among patients is something like the following: “It’s not my emotional or behavioral reactions to pain that disable me, it’s the physical pain!” The sentiment involves a concern for being judged and also being a little put off. Both sentiments are understandable.

At the end of the day, though, is it accurate and is it necessary? Would the patient be better off by coming to understand the truth about fear-avoidance and then learning how to overcome it? Let’s take a close look at these issue.

As suggested above, the point of the resistance to fear-avoidance is really two-fold, but they go hand in hand. First, it is an assertion about what pain is – that pain is a physical sensation that is wholly different from any cognitive, emotional, and behavioral factors related to pain. Second, it is an assertion that if psychological aspects of the experience of pain are acknowledged, then they open up chronic pain patients to the potential shame of stigma and the critical judgments of others. The two assertions work hand in hand because insistence on the notion that pain is solely and only a physical sensation puts it into the medical category of conditions and it is typically socially acceptable to be disabled from medical problems. But, if we acknowledge that there are psychological aspects to the pain experience, then we run the risk of putting it into the psychological category of conditions, and it just isn’t acceptable to be disabled by psychological problems.

As we said, it’s a sensitive issue.

Any response to this common patient reaction requires, not only an expert understanding of what chronic pain is, but also a deep level of compassion and sensitivity in order to convey this understanding to patients, making it okay enough for them to acknowledge and learn from.

Let’s try to show how it might just be true that the psychological aspects of the experience of pain are more important than the physical sensation, especially when it comes to chronic pain-related disability.

Consider, for the moment, two patients with chronic low back pain, Mr. Smith and Ms. Jones. Let’s further suppose that they each have the same exact degenerative changes in their lumbar spine, as evidenced by recent scans. Over the last month, each of their pain has been worsening.

Mr. Smith has been told and therefore believes that the degenerative changes in his spine are inevitably progressive. He conceptualizes his condition as that his ‘discs are degenerating.’ He believes (and may have been told) that given the degenerative nature of his condition he will likely end up in a wheelchair someday. During the last month, his pain has been worsening and he takes it as evidence of his inevitably degenerating condition. This perception of his pain is alarming. Out of this resultant fear, he responds with rest and inactivity. From his perspective, it makes all the sense in the world to rest and remain inactive. Given his understanding of his pain as the result of a fragile orthopedic condition that is inevitably getting worse, he reasons that he needs to not engage in activities as a means to prevent, or at least slow down, the degenerative process in his spine. Just as you wouldn’t walk on a broken leg, rest and not doing too much seems like the best approach for his condition. He rates his pain as intolerable.

Ms. Jones has been told that she has degenerative changes in her spine, but she has also been told it is normal for a person of her age. It was explained to her that the term ‘degenerative disc disease’ is actually a misnomer and that we now know it really isn’t degenerative or a disease. We know, for instance, that most of the time degenerative changes of the spine get better, not worse, and even in those situations where they don’t get better, they almost always stay the same. It was explained to her that chronic pain is actually a complex condition and that her pain is only partly attributable to her stable degenerative changes in spine. The overall state of her nervous system, in terms of central sensitization, and external stressors, can also play a role in maintaining her chronic pain.

Ms. Jones has taken these lessons to heart and is confident that she knows what her pain is and that it is chronic and stable. She has so fully accepted it that it no longer alarms her. She knows that reasonable activities are not going to make her stable degenerative changes worse. She’s identified for herself that if she stays home when having a bad pain day she has nothing to do but focus in on how much pain she has. As a result, her response to pain is to get up and go do something. Of course, she’s reasonable about it and she paces herself when needed. Nonetheless, she sees staying active and productive as ways to cope with pain. Because she knows her degenerative condition is stable, she reasons that the increase in pain over the last month isn’t due to a worsening of her spinal condition and subsequently looks to other reasons for the pain increase. She recognizes that the increase in pain corresponds, for instance, to the last few months of poor sleep and, sometimes, outright insomnia. She knows that her poor sleep is itself due to the stress of some recent family issues — one of her children is going through a difficult divorce and her grandson, from another one of her children, was recently diagnosed with autism. She recognizes that her increased pain is due to the stress of these family issues and the resulting insomnia. So, she sets out to take better care of herself and manage her stress better. She notes that her pain has increased but it still remains tolerable.

Mr. Smith and Ms. Jones have the same degenerative condition and, we assume, the same physical sensation. However, how they make sense of it is very different. How they feel about it is very different. How they behaviorally cope with it is very different. Mr. Smith experiences pain through the lens of it being indicative of a threatening condition that’s inevitably going to bring about severe impairments. Ms. Jones sees her pain as indicative of a benign and stable condition. She also recognizes that she has some control over how much pain she has by managing the state of her nervous system and how much stress she has. Mr. Smith sees his pain as largely out of his control. Mr. Smith’s moods are mostly fear-based. Ms. Jones is mostly confident. Mr. Smith engages in passive coping strategies of rest and inactivity. Ms. Jones engages in active coping strategies of remaining active, productive, and often getting out of the house. Mr. Smith experiences his pain as intolerable. Ms. Jones still rates her pain as tolerable, even though it has increased over the last month.

Mr. Smith, we might say, is fear-avoidant. Ms. Jones is not.

While hypothetical, the case examples show how it is possible that the psychological components to the experience of pain can make all the difference. The physical sensation, we assume, remains constant across both individuals. However, the beliefs about the sensation, the quality of the attention given to it, the mood states that occur during the sensation, and the behavioral responses to it, all have a reciprocal affect on the quality and intensity of the overall experience of pain.

In one instance, these psychological components make the pain intolerable and impairing. In the other instance, the psychological components make the pain tolerable and she refrains from becoming disabled.

A vast array of experimental and clinical research supports our hypothetical cases. Of course, a review of the biopsychosocial nature of chronic pain is beyond the scope of this blog post. I’d refer the reader, though, to any of the numerous reviews of the matter (e.g., Bushnell, Ceko, & Low, 2013; Linton, 2000). You’ll find that beliefs, particularly beliefs of the threatening nature of pain, can influence the self-rated unpleasantness and intensity of pain (Gracely, et al., 2004). It’s well established that people rate their pain as worse when they believe it’s somehow threatening to them, than if they believe it’s benign, even when the painful stimuli is held constant across both groups. You’ll find that it is well established that pain is worse when your attention is focused on it than when your attention is distracted (Bantick, et al., 2002; Eccleston & Crombez, 1999). It’s well established that people with negative mood states will have higher pain ratings than people with more positive mood states, again, even when the painful stimuli is held constant (Tang, et al., 2008; Villemure & Bushnell, 2009; Wiech & Tracey, 2009; Wiech, Ploner, & Tracey, 2008). It’s also well established that people who engage in passive coping strategies, such as rest and inactivity, tend to have higher rates of pain and disability than those who don’t (Jensen, Turner, Romano, & Karoly, 1991; Samwel, Evers, Crul, & Kraaimaat, 2006).

In all, there’s just no getting around the fact that the nature of chronic pain is such that it has both physical and psychological aspects inherent to it. The notion that pain is solely a physical sensation that can be wholly divorced from cognitions, emotions, and behaviors is just not true. In fact, like in the case of fear-avoidance, the psychological components can make all the difference in what makes pain tolerable or not.

As chronic pain experts, we need to find a way to routinely educate patients and the public about the true biopsychosocial nature of chronic pain. We also need to be able to do it well – with compassion and sensitivity. We need to understand why patients might tend to resist what we take as established truth. It’s because of stigma. It’s because in this day and age it is still not socially acceptable to see chronic pain as a psychological condition, even if it is only in part psychological. We need to be able to develop trusting relationships where the truth can be told and discussed, and patients remain accepted and respected.

Patients too need to practice having the ego strength to acknowledge this truth and do so without shame. You don’t have to buy relief from stigma by insisting on something that’s not true – the belief that chronic pain is solely and only a physical sensation that is separable from any psychological factors. The challenge is to practice remaining confident that you are doing nothing that’s worthy of criticism. We might rightfully judge and criticize someone who lies, cheats, or steals. But, we don’t judge or criticize those who struggle to cope with any of life’s psychological problems, chronic pain included.

Indeed, if we all could overcome stigma, then healthcare providers could openly talk about the well established psychological aspects of chronic pain, such as fear-avoidance, and our patients could openly hear it. Together, we could make significant progress in helping people to learn to live well despite having chronic pain. In so doing, we could bridge the divide that has prevented us from acknowledging what we all know is true.

References

Bantick, S. J., Wise, R. G., Ploghaus, A., Clare, S., Smith, S. M., & Tracey, I. (2002). Imaging how attention modulates pain in humans using functional MRI. Brain, 125(2), 310-319.

Bushnell, M. C., Ceko, & Low, L. A. (2013). Cognitive and emotional control of pain and its disruption in chronic pain. Nature Reviews Neuroscience, 14(7), 502-511.

Crombez, G., Vlaeyen, J. W., Heuts, P. H., & Lysens, R. (1999). Pain-related fear is more disabling than pain itself: Evidence on the role pain-related fear in chronic back pain disability. Pain, 80(1), 329-339.

Eccleston, C. & Crombez, G. (1999). Pain demands attention: A cognitive-affective model of the interruptive function of pain. Psychological Bulletin, 125(3), 356-366.

Gracely, R. H., Geisser, M. E., Giesecke, T., Grant, M. A., Petzke, F., Williams, D. A., & Clauw, D. J. (2004). Pain catastrophizing and neural responses to pain among persons with fibromyalgia. Brain, 127(4), 835-843.

Jensen, M. P., Turner, J. A., Romano, J. M., & Karoly, P. (1991). Coping with chronic pain: A critical review of he literature. Pain, 47(3), 249-283.

Leeuw, M. Goossens, M. E., Linton, S. J., Crombez, G., Boersma, K., & Vlaeyen, J. W. (2007). Fear-avoidance model of chronic musculoskeletal pain: Current state of scientific evidence. Journal of Behavioral Medicine, 30(1), 77-94.

Linton, S. J. (2000). A review of psychological risk factors in back and neck pain. Spine, 25(9), 1125-1156.

Samwel, H. J., Evers, A. W., Crul, B. J., & Kraaimaat, F. W. (2006). The role of helplessness, fear of pain, and passive pain-coping in chronic pain patients. Clinical Journal of Pain, 22(3), 245-251.

Tang, N. K., Salkovskis, P. M., Hodges, A., Wright, K. J., Hanna, M., & Hester, J. (2008). Effects of mood on pain responses and pain tolerance: An experimental study in chronic back pain patients. Pain, 138(2), 392-401.

Vlaeyen, J. W. & Linton, S. J. (2012). Fear-avoidance model of chronic musculoskeletal pain: 12 years on. Pain, 153(6), 1144-1147.

Villemure, C. & Bushnell, M. C. (2009). Mood influences supraspinal pain processing separately from attention. Journal of Neuroscience, 29(3), 705-715.

Wiech, K., & Tracey, I. (2009). The influence of negative emotions on pain: Behavioral effects and neural mechanisms. NeuroImage, 47(3), 987-994.

Wiech, K., Ploner, M. & Tracey, I. (2008). Neurocognitive aspects of pain perception. Trends in Cognitive Sciences, 12(8), 306-313.

Author: Murray J. McAllister, PsyD

Date of last modification: 9-9-2013

On the Stigma of Living with Chronic Pain

Let’s talk about something that is hard to talk about. It’s the issue of stigma. It’s a sensitive topic.

Stigma defined

The stigma of chronic pain is one of the most difficult aspects of living with chronic pain. If you have chronic pain, people can sometimes judge you for it. Specifically, they can sometimes disapprovingly judge you for how you are coping with it. If you rest or nap because of the pain, they think you rest or nap too much. If they catch you crying, they become impatient and think you cry too much. If you don’t work because of the pain, you face scrutiny over why you don’t. If you go to your healthcare provider, they ask, “Are you going to the doctor again?” Maybe, they think that you take too many medications. In any of these ways, they disapprove of how you are coping with pain. These disapproving judgments are the stigma of living with chronic pain.

Sometimes, this disapproval of how you are managing your pain crosses over to disbelief that you are in as much pain as you say you are. They don’t believe that your pain is a legitimate enough reason to rest or nap or cry or take narcotic medications or not go to work or to go to the doctor. They might think that you are making too big of a deal out of it. They doubt the legitimacy of the pain itself.

This kind of stigma is the source of the dreaded accusation that chronic pain is “all in your head.” It’s as if to say that you are making a mountain out of a molehill.

Stigma can characterize the relationships of people with chronic pain. It can pop up in your interactions with spouses and family, friends and neighbors, supervisors and employers, and healthcare providers.

Patient responses to stigma

Understandably, stigma puts people with chronic pain on the defensive. When people disapprove of how you are coping with pain and subsequently don’t believe that your pain is as bad as you say it is, the natural response is to argue back. “The pain really is that bad… it’s why I have to rest (or nap or cry or not go to work or go to the doctor) so much,” you might say. As such, you counter with arguments that the pain really is legitimate and that how you cope with it really is legitimate. Who wouldn’t? It’s the normal response to being judged. It’s what you do when stigmatized.

Sometimes patients defend themselves against stigma by emphasizing the biological nature of their pain disorder. For instance, they insist that their pain is solely a medical condition and as such it is beyond their control. They see chronic pain as on par with something like strep throat. No one chooses to be ill. It’s something that just happens. It’s beyond the control of anyone.

This way of understanding the nature of chronic pain stops the stigmatizing judgments of others. You can’t be responsible for something you have no control over and if you are not responsible for your pain, then you can’t be held accountable for it. You can’t be judged. Chronic pain just is what it is and it’s not your fault.

While understandable, this way of responding to stigma has some problematic consequences. You buy relief from stigma at the cost of viewing yourself as powerless to get better. If your understanding of chronic pain is that it is solely a biological illness that can’t be affected by how you live your life, then there’s not much you can do about it. At best, you do what you do with other medical illnesses – you rest, stay at home, don’t go to work, take medicine, and rely on your healthcare providers to provide you with any procedures that might make you well.

This way of understanding chronic pain would be all well and good if there were medicines and procedures that would actually make you well. But chronic pain is not like strep throat in this way. There is no acute medical therapy for chronic pain that is the equivalent of a course of antibiotics for strep throat. There are no cures for chronic pain.

Notice how powerless you become if you conceive chronic pain as solely a biological condition over which you have no control. Without the capacity to affect the course of your chronic pain, there’s nothing you can do about it. You relieve yourself of the responsibility that is the target of stigma, and so dodge the judgmental disapproval, but at the cost of losing your understanding that you can positively affect your chronic pain. To be free of stigma, it seems, you give up responsibility and power to affect your well-being.

Another way people try to overcome stigma is by adopting a strongly held view that they are coping as well as one possibly can given the nature of their chronic pain. They counter the disapproval of others by arguing that those who criticize wouldn’t be so quick to do so if they had chronic pain themselves. They would then know that those with chronic pain are doing the best that they possibly can under the circumstances. It’s a way of justifying the need to do those things that get criticized by others: the resting or napping, the staying home from work, the taking of narcotic medications, or the frequent visits to the doctor. It’s as if to say don’t criticize these behaviors as poor coping; on the contrary, they are indicative of the best possible coping that one might have, given how much pain there is.

While understandable, this way of defending against stigma also has some problematic consequences. It can keep patients from getting better through rehabilitation. The model of chronic pain rehabilitation programs are that patients learn how to successfully self-manage pain. They do so by learning healthy lifestyle changes that reduce pain over time and learning how to cope better with the pain that remains chronic. Notice the potential dilemma here. In order to succeed in rehabilitation, you have to make room for the possibility that you can learn how to cope better with pain. But, for those who have been stigmatized for too long, this acknowledgement can be hard to do. Instead, they maintain the stance that they are coping as well as one possibly can. They can subsequently feel stigmatized by the recommendation to participate in a chronic pain rehabilitation program because it implies that there may be some ways that they could learn to cope better.

This sensitivity to stigma can turn a good thing (the possibility of learning how to cope better) into a bad thing (the perception that the healthcare provider is criticizing them for not coping well enough). When patients have been stigmatized for a long time and have come to defend against it by holding onto a view of themselves that they are already coping as well as one possibly could, they can come to anticipate and perceive disapproval even when it is not there. They can come to feel stigmatized if a healthcare provider offers to coach them on how to cope better with chronic pain.

It eventually comes to a sad and unfortunate breakdown in trust.

This unfortunate kind of thing happens everyday in clinic. I’d like to think that I don’t stigmatize my patients. I try to take every measure to show that I don’t. To the extent that it’s true that I don’t, it is still common for patients who are new to me to anticipate that I will judge them or disapprove of how they are coping with pain. They subsequently emphasize to me how high their pain tolerance is and how well they cope with pain. They emphasize these views about themselves while acknowledging their need to engage in behaviors that so often get stigmatized: resting and napping, taking narcotic pain medications, staying home from work, and visiting healthcare providers. In effect, they are saying, ‘Despite how high my pain tolerance is and how well I cope, I still have to rest and stay home from work’ (or take narcotic pain medications or go to the doctor). Of course, I attempt to reassure them that I don’t judge them. I attempt to show them that I will work with them, wherever they are at in terms of how they are managing pain. Their trust is often difficult to achieve because their relationships with family or friends or their previous healthcare providers have been marked by stigma for so long. If we don’t build the trust, they can leave upset and feel that I am criticizing them by making the recommendation to participate in our chronic pain rehabilitation program.

Thankfully, there are other ways to overcome the stigma associated with chronic pain. People who are successful acquire an ability to deal with stigma while at the same time understand that chronic pain is something that they can learn to have control over in some modest, yet meaningful ways. In other words, they walk the line of not taking blame for their chronic pain while at the same time knowing that they are responsible for managing their pain and overall health. They also understand that however good they may be at coping with chronic pain, they might always get better at it. They know that there really is no end-point to one’s abilities to self-manage pain. The more you learn and the more you practice, the better you get at it. When they do that, they overcome stigma.

In the next post, we will review three ways people become successful at overcoming the stigma of chronic pain.

Author: Murray J. McAllister, PsyD

Date of last modification: 4-1-2013