How to End the Stigma of Pain
 

How to End the Stigma of Pain

Stigma is a significant and persistent problem for those with chronic pain. Stigma occurs when someone is judged for having a condition that they didn't choose to have, like chronic pain. In other words, stigma is the criticism of being bad in some way for simply having a health condition. It can also occur in relationship to how a patient with chronic pain is coping. Stigma thus arises when moral judgments occur not for wrong behavior, which might rightly get criticized, but for simply being who you are, for simply having the health condition that you have, or for how you are dealing with it.

 

Common examples of stigma abound:

  • ‘What’s wrong with you that you never seem to get better?’

  • ‘I have back pain too but I still go to work… Why can’t you?’

  • ‘Are you going to the doctor again?’

  • ‘Come on now, it can’t be that bad…’

  • 'It must be all in your head.’

Patients with chronic pain can feel such judgments coming from most anyone in their life: employers, neighbors, family members, spouses, and even their own healthcare providers. Indeed, it can seem like most anyone has an opinion about the legitimacy of the patient’s pain and coping responses.

 

The end product of stigma is that patients feel hurt, ashamed, and angry. It puts them on the defensive and it can break trust. Moreover, patients with chronic pain can subsequently come to feel misunderstood, isolated and lonely.

 

It’s therefore a significant problem. It warrants an effort by patients and providers alike to resolve the problem of the stigma of chronic pain.

 

 

Typical defense against stigma

Whether as patient or provider, we typically argue against the stigma of chronic pain by denying that chronic pain has any potential psychological aspects to it. Of course, we do so in various ways, but the most common form of the argument is some version of the ‘it’s-not-in-my-(or their)-head’ argument.

 

The denial that chronic pain has any psychological aspects to it constitutes the initial premise of the argument. The next premise tends to be an assertion that chronic pain is instead a medical condition, like any other medical condition. Typically implied, the subsequent premise is that we don’t stigmatize those with medical conditions. The conclusion is that we shouldn’t therefore stigmatize those with chronic pain just as we don’t stigmatize anyone else with a bona fide medical condition.

 

This common argument seems necessary because 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 stigma 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 that it is ‘not in my (or his or her) head’? In effect, the argument assumes that real pain has no psychosocial aspects to it. It’s a common abbreviated form of the above-noted argument to refute stigma.

 

At best, the ‘it’s-not-in-my-(their)-head’ 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 is that it is simply false to assert that chronic pain has no psychological aspects to it. As much as we might deny it, chronic pain is in part a psychological condition. 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. Most people know these things too, or at least they have some vague understanding of them, which is why stigma keeps returning.

 

So, try as we might, we simply can’t rid ourselves 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 both a medical and psychological condition.

 

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

 

We can all stigmatize chronic pain

Usually, when those of us in the chronic pain field, whether as patient or provider, discuss stigma, we confine ourselves to the topic of how society perpetuates stigma. In other words, we focus on the role of those who do the stigmatizing. And, of course, we are right to do so.

 

It’s no doubt problematic when a spouse or an employer persistently doubts the legitimacy of the patient’s complaints of pain because in part the nature of the patient’s pain is psychological. It fosters nothing but shame, anger, conflict, defensiveness, and the need to spend a lot of time and energy proving the legitimacy of pain. So, as such, it is right that we as a field attempt to change societal attitudes that stigmatize those with chronic pain.

 

As we have seen, those in society who stigmatize do so because they associate all things psychological with negative value judgments. We can imagine a spouse, while doubting the legitimacy of his wife’s pain, say, “Aw, come on now, honey, it can’t be that bad!?!” At this point, he might as well say, what everyone starts thinking or fearing, depending on the point of view: “What? It’s got to be all in your head!” No one has to say it, though. It's implied in the initial doubting statement.

 

In certain parts of society, having a psychological problem is clearly bad. You’re a head-case. You need a shrink. At worst, you’re making it up or you’re a hypochondriac. At best, you’re ‘just depressed.’

 

In the face of stigma, it’s thus right that the stakeholders in the field of chronic pain come to the defense of those with chronic pain.

 

When we do so, however, we tend to forget that we too subtly buy into the stigma. By “we,” here, I mean both chronic pain patients and the healthcare providers who treat them.

 

How?

 

We do so when we argue against stigma by asserting that chronic pain is not a psychological problem, even in part. By arguing in this manner, we leave the association between stigma and all things psychological untouched and intact.

 

How often might we hear from patients or other healthcare providers, “It’s not that I am [or the patient is] having trouble coping, it’s that the pain is just that bad!” Notice the de-emphasis of any potential problem in coping, which is a psychological problem, in preference for an emphasis on pain, which is seen as solely a medical problem.

 

How often might you hear a patient or provider describe the patient’s pain as ‘real pain,’ which implies that the pain has no relationship to stress, trauma, fear-avoidance, insomnia, depression or anxiety, as if ‘real pain’ would be void of any such complicating comorbid psychological etiologies?

 

As such, we too buy into the stigma of all things psychological – whether “we” are chronic pain patients or healthcare providers who treat them. It’s ironic that it becomes evident only when we take up the fight against stigma. We tend to deny stigma by denying that chronic pain has anything psychological about it, leaving the stigma of all things psychological intact.

 

It’s more than ironic, though. It’s ineffective. When we argue against the stigma of chronic pain by denying the psychological aspects of chronic pain, we attempt to deny stigma by denying reality. And it never quite succeeds.

 

Perhaps, we need a better way to get rid of the stigma of chronic pain.

 

The naïve view of all things psychological

What underlies the stigma of psychological problems is the assumption that psychological problems are the result of intentionality. When people get stigmatized, they are accused of wanting to be miserable or choosing to be ill, as if they intentionally set out to come down with the condition that they have. In this way of thinking, ‘real’ health problems are problems that people come to have through no fault of their own, whereas psychological problems are problems that people bring upon themselves --with the subtle or not-so-subtle implication that they intentionally brought it upon themselves.

 

In other words, we have in our society a naïve model of illness that differentiates medical problems from psychological problems based on intentionality. The model goes something like the following: medical problems happen to people, without any fault of their own because they have no say in the matter (e.g., people ‘come down with a cold’ and they ‘develop cancer’); psychological problems, however, occur to people because they, in some sense, choose to have them, and so are at fault for having psychological problems.

 

Stigma assumes this naïve model that distinguishes medical from psychological conditions. Stigma is an implicit or overt accusation that the patient is at fault for having the condition. It’s evident in common rejoinders to being stigmatized, such as, ‘It’s not like I chose this to happen to me!’ or some other similar sentiment. The next typical premise in the argument against stigma, as we have seen, is then to assert that chronic pain is the result of an injury or illness that happened to the patient, that it is a medical condition, and that there is nothing psychological about it.

 

While commonly held, this naïve distinction fails to categorize the majority of the most common health conditions of today, including chronic pain. The most significant and common health conditions of our day are at least in part the result of behavior, which we might rightly put on the psychological side of the ledger. Besides chronic pain, they are conditions such as heart disease, obesity, type II diabetes, sleep apnea, reflux, functional bowel syndromes, and even cancer of different types. Notice that we tend to consider these conditions as medical problems, not psychological problems, but nonetheless they are at least in part the result of behaviors, which we usually consider within the realm of psychology. We call such conditions ‘lifestyle-related health problems’ and, like chronic pain, they walk both sides of the fence between what’s considered a medical condition and what’s considered a psychological condition.

 

Many people with such conditions can feel the sting of stigma too. They can feel blamed for their condition, for their role in bringing it about or in maintaining it on a chronic course. Just as those with chronic pain, patients with these other conditions can also engage in similar arguments against stigma: ‘my condition is genetic,’ or ‘it runs in my family.’ In effect, they are asserting that they don’t have a lifestyle-related health condition at all, but rather a straight-up medical condition and as such, their condition happened to them, through no fault of their own. It’s not too far of a stretch to imagine someone, if pressed further, engaging in the rejoinder that those with chronic pain typically express: ‘Hey, it’s not like I chose to be obese (or have a heart attack or become diabetic or to develop lung cancer or…)!’

 

From here, we can see that stigma really comes from a notion that all things psychological, such as behavior, are always intentional. Stigma, in other words, is the criticism that you brought your condition on yourself and that there’s something wrong with you because in some way you must have chosen it.

 

Unchosen behavior

In our day and age, we seem to have difficulty conceptualizing how behavior can be unchosen. Kekes, J. (1990). Facing evil. Princeton, NJ: Princeton University Press. Instead, we tend to think that if we had a hand in the development or chronic maintenance of a health problem, then we must have made an intentional choice to come down with it. We seem to have no other option between conditions that happen to us without any input on our part or conditions that we bring upon ourselves because in some sense we must have wanted it.

 

Gilbert Ryle Ryle, G. (1949). The concept of mind. London: Hutchinson’s University Library. , a mid-twentieth century philosopher, would have considered this naïve model of illness a ‘categorical error.’ What he would have meant was that we are confusing categories of things, which then lead to the need to deny reality. When we equate the concepts of ‘psychological’ or ‘behavior’ with the concepts of ’intentionality’ or ‘choice,’ we come to deny that all things psychological, including behavior, has anything to do with what ails us. If we don’t, we set ourselves up for stigma because it is our choices, which are the object of criticism and blame. Therefore, we seem to need to deny the reality that our behavior plays a part in the development of lifestyle-related health conditions.

 

It’s what we think we have to do in response to the stigma of chronic pain: we must deny that behavior has anything to do with the fact that a patient has chronic pain, because if we don’t it means that the patient must be choosing to have chronic pain and thereby will become an object of stigma, which we don't want to happen.

 

Rather than deny the reality that chronic pain is in part a psychological problem, maybe we should come to see that we are making a categorical error. It’s just simply not true that all behavior is chosen.

 

Ludwig Wittgenstein Wittgenstein, L. (1953). Philosophical Investigations. New York: Macmillan. , another twentieth century philosopher, whom Ryle followed in many ways, would have admonished us to look and see the common, everyday ways that we do things without actually choosing to do them. By reminding ourselves of our typical activities in day-to-day life, we come to show the categorical error that we make when we think that all behavior must be intentional behavior. So, let’s remind ourselves of the following common activities.

 

We often do things without thinking. We also commonly act habitually. We sometimes do things compulsively, because we’d be too tense or restless if we didn’t. Who among us hasn’t done something without entertaining the consequences first? Who among us hasn’t done it countless times? We also do things in the heat of passion or when upset or angry that we might not do otherwise if we weren’t so emotional. We also live much of our life by routine. We get up in the morning, for instance, and do a lot of morning activities of getting ready for the day without much thought or awareness on our part. We also engage in a lot of behavior out of addiction. Here, we don’t necessarily mean the big addictions in life – alcohol, illegal drugs, or prescription drugs, though the point applies to behaviors related to these drugs too. Rather, think of the countless behaviors that occur in relation to the use of nicotine or caffeine. Does the smoker think all that much when he or she reaches for the pack and lights up? How intentional of a decision is it, really? The same is true, of course, when it comes to pouring your morning cup of coffee or reaching for a can of soda at mealtime. And what about food choices? How much thought is going into the behavior of eating out of the bag of chips while watching television or when you automatically answer ‘yes’ when the server asks, ‘Do you want fries with that?’

 

If we can step outside the categorical error of equating all behavior or all things psychological with chosen behaviors or intentional behaviors, we can come to see that we spend a lot of our day to day life, perhaps even the majority of it, engaging in activities and behaviors that we do not choose, but just do without thinking about it too much.

 

It is these kinds of unchosen behaviors that, when done over time, lead to lifestyle related health conditions. We all know that certain lifestyle behaviors lead to conditions, such as heart disease, obesity, type II diabetes, certain types of cancer, and so on. They occur when we eat too much or eat the wrong kinds of foods for too long; when we smoke; when we don’t get enough exercise; when we are stressed for too long; and so forth. When these kinds of behaviors occur for a long enough time, lifestyle related health conditions are the result.

 

No one sets out to develop a lifestyle related health condition and no one intentionally engages in the behaviors that lead to these conditions, at least no one does so on a repetitive basis for years with the goal of developing a health condition.

 

In defense against stigma, people rightly deny that they chose to have the condition that they have: ‘Hey, I didn’t choose this!’ So often, though, we take the next step and deny that we have any responsibility in our health by denying that behavior has anything to do with it: ‘It’s genetic’ or ‘It runs in my family.’

 

We do so at our peril. It leads to denying that we have any power to affect change in our health. ‘It’s not me; it runs in my family.’ We get free of stigma by coming to see ourselves as prisoners of our genetic make-up. There’s not much you can do about your genes, it seems, so what does health behavior change have to do with it? Why bother?

 

The problem here is that it is just not true. Our behavior does play a role in the development and chronic maintenance of lifestyle related health conditions, such as chronic pain.

 

Wittgenstein, to who we referenced earlier, liked to point out that a sure sign of a mistake in reasoning is when our reasoning leads us to deny something that we all know is true. With this admonition in mind, we might recognize that this line of reasoning leads us to deny a common truth: how we live our lives has something to do with our health.

 

It’s the truth of what our mothers and grandmothers told us: don’t go out without a coat; get outside and get some fresh air; go outside and play (i.e., get some exercise); but don’t go out with wet hair; don’t watch TV all day; eat healthy foods; don’t eat too much; a treat is okay but not too often; sodas are a treat; keep active; get a good night’s rest; don’t stay up too late; eat your fruits and vegetables; eat a well balanced meal; an apple a day keeps the doctor away.

 

So, it’s true that behavior plays a role in our health. Indeed, it’s unchosen and unhealthy behavior that plays such a big role in lifestyle-related health conditions, such as chronic pain.

 

This recognition, though, may not put an end to the stigma of chronic pain or any other chronic lifestyle-related health condition.

 

Even if we can now acknowledge that not all behavior is chosen behavior, we are still open to the charge that we should have known better. We should have seen it coming. We should have been more aware of the behaviors that we engaged in and which affected our health.

 

Think of all the behaviors that, when done over time, habitually and without much thought or consideration for the consequences, can lead to or maintain heart disease, obesity, type II diabetes, and chronic pain, among others. Even though no one intentionally sets out to engage in these behaviors for the purposes of bringing about these conditions, people with these conditions might still become the object of criticism and blame – for maybe they should have been more aware or should of considered the consequences and subsequently should have done something about it earlier. As such, people with lifestyle-related health conditions can still feel stigmatized even if they never actually chose the behaviors that led to or maintains their health condition.

 

How, then, do we end such stigma?

 

A recent, previous solution to stigma

It bears mention that in times past we have had ways of understanding health conditions, such as chronic pain, that did not lead so readily to stigma.

 

Beginning in the early twentieth century and thereafter for about the next sixty years, much of the health and social sciences had a conceptual model that resolved the problem of stigma. It was the model of psychoanalytic theory.

 

Having fallen out of favor in the last forty or so years, it’s now somewhat forgotten that Freud and the many who came after him promoted a psychology of health that took into account the role of unchosen behavior in the development and maintenance of health problems, but without making them an object of blame, or stigma.

 

One of the hallmarks of psychoanalytic theory is its focus on the ‘unconscious.’ This often misunderstood term is simply a way of recognizing that we don’t consciously choose much of what we think, feel, and do in life. As we discussed above, we do a lot of things without thinking about them. ‘Unconscious,’ in this sense, simply means unaware or unintentional.

 

Psychoanalytic theory recognized the central role that thoughts, feelings, and behaviors have in the development of health problems, especially when we are not particularly aware of them and not intentionally choosing them. In this sense, the term ‘unconscious’ is just another way to describe the habitually engaged activities that lead to lifestyle-related health conditions.

 

Freud’s famous dictum that the aim of therapy was ‘to make the unconscious conscious’ was the goal of care. In other words, the goal of care is to help people to develop the abilities to have greater awareness of thoughts, feelings, and behaviors and to subsequently make them more intentional – what today we might call more ‘mindful.’ In so doing, patients develop the abilities to live more healthily because they have greater abilities to slow down, become more aware of what it is they are doing, and as a result be in a position to make choices that are in line with their overall goals of life, such as being happy and healthy.

 

Psychoanalytic theory, though, also recognized that the product of such therapy is an exception to how most of us live our lives and in this recognition they overcame stigma. That is to say, if we recognize that most of us, most of the time, are not living our lives with such awareness and as a consequence are not intentionally engaged in activities that align with our goals and values, then we recognize that we are all in the same boat together.

 

Who among us hasn’t fallen off the wagon of whatever health behavior change we have been trying to make? Let them cast the first stigmatizing judgment. No one, of course, can step forward.

 

Psychoanalytic theory recognized this almost universal truth: we all tend towards engaging in self-defeating behaviors of which we are not fully aware or intentionally doing, but which nevertheless lead to poor health. The psychoanalytic term for this characteristic was ‘neurotic.’ What’s normal is thus neurotic and the characteristic of being neurotic is one of being our own worst enemy. We all can be our own worst enemy.

 

This recognition resolves stigma. The understanding that everyone has issues, including ourselves, inhibits any tendency to stigmatize others for their issues. Not everyone has chronic pain, of course, but who is anyone to judge? We all have something. We all have some health problem, which we all could or should be working on.

 

It is with humility and empathy therefore that we should approach those with chronic pain, not stigmatizing judgment.

 

An ancient solution to stigma

Going back still further in history, the ancient Greeks also recognized this human capacity for being our own worst enemy. Indeed, they elevated this truth to the art forms of comedy and tragedy. These genres involved a theatrical production of a character who engages in actions that unwittingly lead to farcical or tragic consequences. Of course, these genres continue to this day in the forms of novels, movies, and plays. Their popularity reflects the fact that we can all identify with the plot and see our humanity in front of us. Comedies and tragedies foster in us humility and empathy, which allow us to laugh or cry alongside the main character.

 

In their classic way, the ancient Greeks located this art form at the intersection of philosophy (what we’d now call science) and morality. When we recognize the psychological truth that we tend to engage in ways of living that lead to our own poor health, it elevates our moral sensibilities to humility, empathy, and compassion for those who, like ourselves, have poor health in part because of how they live their lives. Art, then, in the form of the comedy and tragedy, allows us to see the comic and tragic in us. It allows us to foster the abilities to be serious and compassionate, when the tragic aspects of our lives become apparent, but also humble and light-hearted when the comic aspects of our lives become apparent. For after all, there is a fine line between tragedy and comedy.

 

The art forms of comedy and tragedy thus reflect the reality of our lives: how we live our lives has something to do with our health and well-being and yet how we live is more often than not the product of unintentional and unwitting behaviors. This fact can be sad or funny or both, when we recognize that we are all in it together. In our tears and laughter, we have compassion for those, like us, who suffer the consequences of all these unchosen behaviors. In other words, the art of the comedy and tragedy point us to a way to end stigma.

 

Rising to the challenge of how to end stigma

So, how do we end the stigma of chronic pain today? Maybe the lessons from the past are that we must do so without denying our psychological humanity. When we attempt to refute stigma by denying that  ‘real’ chronic pain has anything psychological about it, we make more than a categorical error that leads to denying the truth of something that we all know to be true. We rob ourselves of the opportunity to have compassion for one another.

 

In our present age, more often than not, we shirk responsibility for our well-being by asserting that chronic pain, or whatever ails us, happened to us. It was not of our own doing – not even in part, and it is not of our own doing that it maintains itself on a chronic course. The condition, whatever it is, runs in the family. It’s in our genes. We buy relief from stigma, or blame, from others at the cost of seeing ourselves as powerless to affect change in our health and well-being.

 

It also comes at the cost of maintaining the conditions of stigmatizing. Woe to those who can’t find a way to attribute their poor health to either their genetic constitution or their poor luck of what happened to them; for they will continue to be the object of stigma.

 

What we need, therefore, is a way to put an end to stigma when we have conditions for which we have had a hand in developing through our own habitual unwitting behaviors – conditions, which fall on the psychological side of the ledger of health.

 

We do so by admitting it, each and everyone of us. We admit that we all can suffer from conditions that in part we unintentionally have a role in developing or maintaining. When we acknowledge, rather than deny, our all-too-human capacity to live in ways that work against our own best interests, we lay claim to not only the worst of ourselves, but also the best of ourselves. In the acknowledgement of our human frailty, in other words, we find our compassion, empathy, and acceptance of one another.

 

We also finally put an end to the stigma of chronic pain and any other so-called lifestyle-related health condition.

 

Author

Murray J. McAllister, PsyD, is the executive director of the Institute for Chronic Pain. The Institute for Chronic Pain is an educational and public policy think tank. Its purpose is to bring together thought leaders from around the world in the field of chronic pain rehabilitation and provide academic-quality information that is also approachable to all the stakeholders in the field: patients, their families, generalist healthcare providers, third party payers, and public policy analysts. Its aim is to change the culture of how chronic pain is managed through education and consultation efforts that advocate for the use of empirically supported conceptualizations and treatments of chronic pain. He also blogs at the Institute for Chronic Pain Blog.

 

References

Last Updated on Monday, 26 October 2015 00:05

Published on Monday, 10 November 2014 01:40

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