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Conversion Disorder https://instituteforchronicpain.org Sun, 29 Jan 2023 15:05:21 +0000 Joomla! - Open Source Content Management en-gb Why the Stigma of Chronic Pain Remains https://instituteforchronicpain.org/blog/item/149-52why-the-stigma-of-chronic-pain-remains https://instituteforchronicpain.org/blog/item/149-52why-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

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Stigma Sun, 26 Oct 2014 19:26:31 +0000
How Stigma Prevents Self-Management https://instituteforchronicpain.org/blog/item/143-46how-stigma-prevents-self-management https://instituteforchronicpain.org/blog/item/143-46how-stigma-prevents-self-management

We tend to stigmatize pain because we misunderstand its nature. Specifically, we fail to acknowledge the role that the nervous system plays in producing the experience of pain. If we more fully appreciated this role, we would understand that chronic pain is similar to other health conditions that we don’t stigmatize much, such as high hypertension (i.e., high blood pressure) or type II diabetes.

Stigma of chronic pain defined

Stigma is someone’s negative judgment or criticism of you for having a condition that is not of your choosing. You didn’t choose to have chronic pain, but when getting stigmatized, you are getting blamed for having it or not coping with it well enough. It’s often in the form of a rhetorical question: ‘How could you possibly have so much pain?’ ‘How could you hurt when all I did was hug you?’ ‘Why are you suffering so when others with the same condition don’t suffer as much as you?’ The assumption that leads to these stigmatizing rhetorical questions is that the severity of pain should always correspond to the severity of injury or illness. Small injuries or mild illnesses should cause only mild pain, whereas only large injuries or serious illnesses should cause severe pain. However, more often than not, chronic pain patients don't fit this mold. Herein lies the rub. Patients with chronic pain seem to have severe pain often beyond what this assumption leads us to believe they should have. Simple movements seem to cause severe pain. Hugs can cause pain. Common conditions like chronic back pain lead to severe suffering in some people. This assumption subsequently leads to stigma. It can't be the injury or illness that causes such severe pain or suffering. It must be something personal about you that causes such pain or suffering. In other words, you are to blame.

In reaction to stigma, chronic pain patients can often assert that they didn’t choose to have chronic severe pain and, as such, there’s nothing they can do about it. They go on to assert that it is not something about them, but the condition they have. It is inherent to the pain, not something personal about them. Anyone, they assert, would be the same way if they had such pain.

In its blame of the victim, stigma insinuates that you are choosing your suffering. In defense of such blame, you emphasize your lack of choice in either having pain or its subsequent suffering. ‘It’s not me,’ you might say, ‘it’s the pain.’

Control over unchosen events

As described in previous posts on stigma, this defense is problematic in two ways. First, in asserting your lack of choice in the matter, you can easily fall into the trap of asserting that you have no control over the pain. That is to say, in response to stigma, it’s so easy to go from, say, “Don’t blame me. I didn’t choose this...” to “There’s nothing I can do about it.” As such, we tend to equate lack of choice with lack of control. If we don’t have control, we couldn’t have chosen it and if we couldn’t have chosen it, we can’t be blamed for it. While it might be a successful defense against stigma, the argument wins at the cost of coming to see yourself as powerless to pain. (Indeed, many patients with chronic pain often feel this exact way: like they have no control over their pain.) Powerlessness, however, is not a good thing as it leads right to suffering. Those who suffer have no power to affect the problem from which they suffer. Second, it is not factually accurate. It is possible to have some control over our health, including pain levels and how much one suffers. Now, of course, some patients with chronic pain might have to learn how to improve their health or how to gain better control of their pain and to cope better. However, the fact that some may need to learn how to manage pain well is different than the notion that it is impossible.

We thus arrive at a dilemma that chronic pain patients face: either they acknowledge that they have some degree of control over their pain and suffering, and subsequently become the object of blame or criticism if they are not doing a very good job of it, or they deny that they have any degree of control over their pain and suffering, and subsequently see themselves as powerless.

This dilemma can essentially shut down the possibility of learning how to effectively self-manage pain. To learn how to effectively self-manage pain, people with chronic pain have to learn how to acquire control and responsibility over their health, including their pain. This possibility opens the doors to stigma. To prevent the stigma, it is easy to assert that having some degree of control over pain is impossible -- buying relief from stigma at the cost of denying the possibility of any meaningful ability to effectively self-manage pain. The dilemma, however, is a false dilemma. It is based on a failure to understand the true nature of pain. Like stigma itself, the defense against stigma assumes that there are only two possible causes for severe pain: a severe injury or illness on the one hand or some personal weakness on the part of the patient who has pain. Everyone seems to fail to recognize that there may be a third option. Specifically, they fail to take into account the role of the nervous system in producing the experience of pain.  By taking it into account, you can skirt the dilemma of stigma and learn to effectively self-manage pain.

A subjective experience with neural underpinnings

We tend to think of pain as a physical sensation. However, we are only partly correct. It’s also a subjective experience. We can’t divorce the sensation from the perceiving subject – the person who has the sensation. It’s also not just any old sensation. While involving a bodily sensation, the experience of pain also inherently includes a cognitive appraisal of threat, an emotional sense of alarm or distress, and an automatic behavioral reaction to protect, usually through resting and/or guarding. These are the things that differentiate pain from other sensations, say, tickles. We simply don’t perceive a tickle to be threatening or alarming. We cry when in pain, yell out in distress, grimace, and guard the painful area. We laugh and squirm when tickled.

Pain, in this sense, is a danger signal. It signals to us that something is wrong in the area of the body that has the pain. A tickle doesn’t signal to us that there is anything wrong. Pain does. Inherent to the sensation is this sense that it is threatening and alarming. These are the essentially cognitive and emotional aspects of the experience of pain. (See the generally accepted International Association for the Study of Pain’s definition of pain.)

The nervous system is what produces this experience. The nervous system consists of all the nerves in the body, including nerves in limbs, in our bodily organs, as well as the spinal cord and brain. When an injury occurs, nerves in the affected area detect it. They subsequently send an electro-chemical message from the site of injury to the spinal cord and then up the spinal cord to the brain. Multiple areas of the brain become involved to produce the sensation and its inherent cognitive appraisal of threat, the emotional sense of alarm, and the behavioral reflex of guarding and grimacing (Melzack, 1999; Moseley, 2003).

In this way, the nervous system functions like a fire alarm in an office building. With a fire alarm, a smoke detector senses smoke and sets off the entire alarm system. The loud sound of the alarm signals threat. As a result, everyone becomes alarmed at the threat of fire and leaves the building. Fire fighters come to the rescue and put out the fire. The next day everyone is back at work and things return to normal.

Similarly, the nervous system, acting like an alarm system, can detect some bodily disturbance and sets off the alarm of pain. Pain, like the loud sound of a fire alarm, signals the threat. Inherent to the sense of alarm, the person becomes alarmed and reacts reflexively. Like fire fighters coming to the rescue, the person with pain and/or healthcare providers fix what’s wrong or the body naturally heals and the alarm of pain subsides. Things return to normal.

Alarm systems can become set at different levels of sensitivity

Now, with any alarm system, we want its sensitivity to stimuli to be set just right. Imagine if an office building’s fire alarm system was set too high -- where it doesn’t detect smoke until the fire is raging. It wouldn’t do us any good, would it? We also wouldn’t want the sensitivity of the alarm system to be set too low -- where it goes off, say, every time someone walks by the building smoking a cigarette. Rather, we want our fire alarm systems set at just the right level of sensitivity.

Similarly, we want our nervous system set at just the right level of sensitivity as well. We want to be able to feel pain long before an injury, say, becomes life threatening. Our nervous system wouldn’t be very useful to us in such a case. But, we also don’t want to feel pain in response to stimuli that is typically not painful – such as touch or the light pressure of hugs, normal movements like getting up from a chair or walking, changes in barometric pressure, or emotional stress.

Nonetheless, that is what’s happening in chronic pain. Chronic pain is like what happens with a faulty alarm system – one where the threshold for sounding the alarm is set too low and so it’s getting set off in response to stimuli that is typically not threatening (i.e., painful).

By definition, chronic pain is pain that continues past the normal time of healing. There is no longer a bodily disturbance for the nervous system to detect because the injury has healed. With chronic pain, though, the nervous system remains reactive, detecting normal stimuli as if they are threatening and, as a result, sounding the alarm of pain.

It’s how people can develop pain in the absence of any objective findings of injury. It’s also how people can have pain in response to normal stimuli like touch, mild pressure, simple movements, changes in barometric pressure, or emotional stress.

It’s important for people with chronic pain and the people around them to know that they are not making this pain up. The pain is real. And there is a real explanation for their pain. It’s being produced by the nervous system in much the same way as any other pain. The only difference is that their nervous systems are stuck in a heightened state of reactivity, and so the threshold for sounding the alarm of pain has come to be set too low. It is sounding the alarm bells of pain in response to stimuli that is typically not sufficiently dangerous to elicit the alarms bells of pain – just like an office building’s fire alarm going off when someone walks by outside on the sidewalk smoking a cigarette.

Chronic pain is real pain due to central sensitization – not tissue damage

This heightened state of reactivity of the nervous system is called central sensitization. It’s a real health condition that can be the cause of chronic pain. It maintains pain beyond the normal healing process of an injury or, as commonly occurs, when scans show normal age-related osteoarthritic findings. In such cases, chronic pain is not necessarily due to healed injuries or normal, age-related osteoarthritis in joints or the spine, but rather due to an up-regulated nervous system that is setting off the alarm of pain in response to stimuli that is not typically associated with pain. In other words, central sensitization is what maintains pain on a chronic basis.

Central sensitization is as real as hypertension or type II diabetes. In each of these health conditions, some bodily system or aspect of a bodily system is abnormally elevated – the nervous system having become too reactive in the case of chronic pain, the cardiovascular system becoming regulated too high in the case of hypertension, and heightened levels of blood sugar (an aspect of the neuroendocrine systems) in the case of type II diabetes. All three conditions are common examples of an up-regulation of a bodily system or an aspect of a bodily system that over time has become problematic (i.e., symptomatic).

Why stigmatize pain when we don’t stigmatize hypertension or type II diabetes?

When we understand this role of the nervous system in the production of the experience of pain, we see that chronic pain is real pain that has a real explanation. People make up chronic pain about as often as people make up having hypertension or type II diabetes, which is to say, they don’t make these things up. So, why stigmatize chronic pain?

We typically don’t stigmatize these other conditions because we understand that we don’t choose to have these conditions – at least not in any sense of the word “choose” that we typically use. For instance, no one decides to have hypertension or type II diabetes as if it was a choice between having one of these conditions or not. Choices typically involve having a ready or easy control over a set of options. ‘Would you like coffee or tea?’ – now that is a choice. There is no similar use of the word “choice” that might apply to hypertension or type II diabetes. No one ever faces a decision such as, ‘Would you like to be diabetic or not?’ No, it just doesn’t make sense to use the notion of “choice” with regard to conditions like hypertension or type II diabetes.

Similarly, no one chooses to have chronic pain. Just as we don’t have ready or easy control over our cardiovascular systems or our blood sugars, we don’t have ready or easy control over our nervous systems. It’s not like you can just make a decision and choose to no longer have chronic pain, hypertension or high blood sugar levels. No, it doesn’t work like that.

As such, stigma is misplaced blame. It relies on an overly naïve view of pain as something that one can just make up or will into (or out of) existence. However, as we see, having chronic pain is not the product of a choice or decision.

Chronic pain is not impossible to control

While chronic pain is not the result of a choice, it is possible to control it to some meaningful extent. This control, however, is not readily or easily attained – it’s not like we choose between health and ill health as we choose between coffee and tea. Nonetheless, we can affect change to our health over time and with a concerted effort.

The analogies between chronic pain and hypertension and type II diabetes continues to be helpful here. With a concerted effort over time, we can affect significant and meaningful changes in each of these conditions. It often requires a team effort between medical and health psychology providers and the patient (and possibly even their families). The focus of care is self-management: assisting the patient to make healthy changes over time that will positively affect the condition that the patient has.

In the case of hypertension, the focus of change is a combination of multiple approaches that might include, but may not be limited to any of the following: use of medications, stress management, achieving a healthy weight, improvements in diet, engaging in an aerobic exercise, cessation of tobacco use, and treatment of any type of anxiety disorder or depression. By pursuing these health behaviors over time, hypertensive patients come to down-regulate their cardiovascular system and subsequently lower their blood pressure.

In the case of type II diabetes, the focus of change is a combination of multiple approaches that might include, but may not be limited to any of the following: use of medications, achieving a healthy weight, improvements in diet, stress management, engaging in an aerobic exercise, and treatment of any type of anxiety disorder or depression. By pursuing these health behaviors over time, type II diabetic patients come to down-regulate their blood sugar levels.

Notice that these health behavior changes are difficult to achieve. They take time. They often require coaching and support from medical and health psychology providers, as well as support from family members. However, they are not impossible. That is to say, it is possible to affect significant and meaningful change to conditions like hypertension and type II diabetes. We all recognize that if we were to come to have either of these conditions, we would not be fated to uncontrolled hypertension or type II diabetes. We know that we can affect them. Through a process of learning how and sticking with it over time, we can come to have meaningful control over these conditions.

Chronic pain is the same way. Learning how to manage chronic pain well is possible, but it takes a concerted effort over time. It often also requires a team effort that includes health psychology providers, medical providers, physical therapists, and the patient (and often the patient’s family too). This kind of team is typically found in an interdisciplinary chronic pain rehabilitation program. It also tends to require an accurate understanding of the role of the nervous system in maintaining pain on a chronic course. Why? It’s because the focus of care is to down-regulate the reactivity of the nervous system through a combination of medical, health psychology, and self-management approaches that we know to be effective. By pursuing these changes over time, patients come to reduce pain and increase the ability to cope with the pain that remains.

These therapeutic approaches consist of, but are not limited to, the following:

  • Effective non-narcotic medication management (particularly anti-epileptics and antidepressants)
  • Cognitive-behavioral therapy involving coping skill training
  • Mild aerobic exercise
  • Relaxation therapies
  • Exposure-based therapies to reduce fear-avoidance
  • Stress management & treatment of any co-occurring depression or anxiety disorders
  • Cognitive-behavioral therapy for insomnia
  • Tapering of opioid medications, if applicable

When patients pursue these therapies and strategies, they learn how to engage in them independently and take over doing them on their own. Over time, they come to affect their nervous systems by down-regulating its reactivity and subsequently have less pain. Because they do it themselves, they come to see that they are no longer powerless to pain and subsequently it is one of the most empowering experiences of their life. For the first time in their life with chronic pain, they have successfully learned how to control their pain at tolerable levels and have proven to themselves that they can do it. Such know-how and empowerment comes to further increase their abilities to cope with pain. As such, they develop a positive cycle of increasing self-management that leads to less pain, which in turn leads to improved empowerment and coping, which subsequently leads to improved self-management.

Notice, though, it takes work. In fact, it takes a lot of work. Successful self-management is the product of a long and concerted effort to make healthy changes over time.

As anyone who has ever attempted to make long-term changes to their health, this sense of control is not an object of stigma, but rather an object of admiration.

References

Melzack, R. (1999). From the gate to the neuromatrix. Pain, S6, S121-S126. Moseley, G. L. (2003). A pain neuromatrix approach to patients with chronic pain. Manual Therapy, 8(3), 130-140.

Author: Murray J. McAllister, PsyD

Date of last modification: 6-27-2014

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Self-management Sun, 22 Jun 2014 18:54:58 +0000
Overcome Social Stigma of Chronic Pain https://instituteforchronicpain.org/blog/item/122-25overcome-social-stigma-of-chronic-pain https://instituteforchronicpain.org/blog/item/122-25overcome-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.

Author: Murray J. McAllister, PsyD

Date of last modification: 10-26-2013

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Stigma Sat, 26 Oct 2013 11:01:17 +0000
On the Stigma of Living with Chronic Pain https://instituteforchronicpain.org/blog/item/108-11on-the-stigma-of-living-with-chronic-pain https://instituteforchronicpain.org/blog/item/108-11on-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 publication: April 1, 2013

Date of last modification: April 1, 2013

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) Stigma Mon, 01 Apr 2013 01:01:15 +0000
Social Stigma https://instituteforchronicpain.org/understanding-chronic-pain/complications/social-stigma https://instituteforchronicpain.org/understanding-chronic-pain/complications/social-stigma

What is stigma?

Stigma is the social disapproval of a characteristic of a person and, typically, the characteristic is not changeable or not easily changeable. The disapproval is a critical judgment that an individual is not normal and has less worth than those in the norm. A natural response to stigma is shame and shame-based defensive anger.

Personal characteristics that are common objects of stigma are the following:

  • Racial or ethnic identities
  • Religious affiliations or identities
  • Homosexuality
  • Physical disabilities
  • Obesity
  • Mental illness
  • Substance dependence
  • Having HIV or AIDS
  • Being a victim of sexual assault or abuse
  • Chronic pain

Most of these characteristics are not changeable and some of them are not readily changeable. When they are the object of stigma, the person is judged as abnormal and not as good as those in the norm. They are found at fault, despite being unable to change or, at least, easily change.

Stigma adversely affects the lives of those who are the object of it. It can elicit shame and, over time, low self-esteem. It can also elicit defensive anger and resentment. A noteworthy aspect of stigma is that it doesn’t have to actually occur in a particular situation for it to have an adverse effect. People who have been previously stigmatized can come to anticipate it and come to feel it even when it’s not present. As a result, they can develop a certain level of fear or anxiety about it in their personal interactions with others or they can develop a tendency to quickly become defensive or irritable in their interactions with others. Over time, they can come to identify with the stigma, becoming socially isolated or feeling as if they really are different from the norm. The result is a poor self-concept and low self-esteem.

Stigma of chronic pain

Chronic pain patients can be an object of stigma. It’s important to recognize, though, that it’s not the pain itself, which is stigmatized, but what’s perceived as poor coping with pain. After all, when people cope well with pain, they tend to be esteemed. They are seen as strong. It’s not so for people who remain distressed and disabled by pain. They face the social disapproval of stigma.

A common scenario is something like the following. At the onset of pain, most patients receive well wishes and assistance. Their friends and loved ones express understanding and support of their emotional distress and impairments. The friends and loved ones might also offer help with getting to appointments, picking up the kids, and the like. Over time, though, this understanding and support dissipates. Maybe, they become frustrated by what they perceive as a lack of progress in your recovery. Maybe, they disagree with the therapies and procedures you are obtaining. Maybe, they have chronic pain too and they seem to have been able to remain at work and remain active in their life’s other pursuits. In any of these ways, friends and loved ones come to start disapproving of how the chronic pain patient is handling the pain and its management. They see the patient as stuck and want him or her to move on with life. Therein lies the stigmatizing social disapproval.

While there may be a number of sources of stigma as it relates to chronic pain patients, two common ones are a) comparisons to those who cope better with pain, and b) impatience with the patient that he or she is not coping better. Let’s look at these sources more closely.

An often overlooked fact in chronic pain management is the fact that people cope differently with chronic pain. Much of the time, the focus of healthcare providers and their patients is on the level of pain that the patient experiences and trying to reduce it. In this focus, it is easy to assume that there is a direct inverse relationship between pain levels and degrees of coping. Specifically, the assumption is that, as pain levels increase, coping becomes more difficult and vice versa. Is this assumption fully warranted? It is apt to be true that high pain levels will be more difficult to cope with. Think, for example, the pain of torture: even the best copers in the world will ultimately reach a point at which they cannot cope when being tortured. But is it warranted to assume that the reverse is true? Does experiencing difficulty with coping invariably mean that pain levels are high? Might it not be the case that some people's threshold is higher (or lower) than others and so different people come to struggle to cope at different levels of pain? We can recognize that even with high pain levels people have different subjective responses in their attempts to deal with it. Some ways of responding are going to be more effective than others, which is to say, some people will cope better than others, even with high levels of pain.

It is this fact that leads to the problem of stigma. Some people cope better than others with pain – even high levels of pain. Patients with chronic pain are recurrently held to a standard that they should be coping well with their pain. It’s as if to say that because some people cope well with chronic pain all people with chronic pain should cope well. The fact is, though, that some people experience difficulties in coping with chronic pain.

For many, coping well with chronic pain is not easily learned or achieved. Society commonly does not afford patients with chronic pain much patience in the process of learning. For some period of time after onset of pain, as we described, friends and loved ones give patients a break. After awhile, though, they come to expect that patients should have learned how to cope well. Indeed, people come to expect such patients to just know how to do it. Thereby, they come to hold patients to a standard of coping well and they can have little patience for the fact that patients have trouble learning how to do it.

Patients with chronic pain can buy into this standard too. They assume that they should be coping well. When someone judges them for not coping well, it stings because they assume that they should be coping well, but know they aren’t, and the person’s judgment simply brings the discrepancy to light. As such, they feel the shame of stigma. They are stuck: they are failing in what they are supposed to do (i.e. cope well with pain), but don’t know how. On top of it all, someone notices and says something, making it public, as it were. The result is the feeling of shame. Some patients, when feeling such shame, can also become quite defensively angry. A good defense, in this sense, is a good offense.

Consequences of stigma

The stigma of chronic pain can keep patients from getting effective care. To understand how, it’s necessary to return to the point about the difference between pain itself and how people respond to it, or cope with it.

The experience of chronic pain might be divided into two parts: the pain itself and how the patient reacts to it. This reaction involves cognitive, emotional, and behavioral components. It’s what we call coping.

For example, suppose a person with chronic low back pain has a pain flare and the person reacts to the flare in the following manner. He thinks that the pain flare is due to a worsening of the underlying degenerative disc disease in his spine. It reminds him of what he believes about degenerative disc disease – that it is inevitable that it’s going to get worse. He subsequently starts thinking that he better not do anything today for fear of making the degenerative disc disease worse. At times, he finds himself thinking of the future and seeing himself in a wheelchair some day. This manner of thinking about the pain flare corresponds with a certain set of emotional reactions, namely, fear and anxiety. Becoming overwhelmed by the pain and the anxiety about the future, he decides to rest today, remain in bed or on the couch, and keep himself from engaging in the activities that he had previously planned to do. At some point, such as the next day, the pain flare subsides. His thoughts turn to all the things he didn’t get to and how he is behind in everything he had planned to do. He is angry about having to suffer with chronic pain, but at the same time he feels a bit helpless. He thinks of himself as having no control. This next day he spends getting down on himself for everything he was supposed to have done, but didn’t do, because of the pain. As a consequence, he feels pretty hopeless and depressed.

The example shows how coping with pain is a set of reactions to pain that involve cognitive, emotional, and behavioral responses.

Now, here’s the sticking point: Is this person coping poorly or well with chronic pain? The answer might depend upon your frame of reference.

Objectively, from the outside, one might make a reasonable argument that he is not coping well. He was laid up for the day, anxious, and now he’s down on himself for the things he didn’t do yesterday and is slightly depressed about it all.

Undoubtedly, though, at least some chronic pain patients, whose perspective is more from the inside, would argue that he is coping well or, at least, as well as one can under the circumstances. They might assert that at least he got up the next day and tried again to resume his normal activities, as he might have laid in bed all day again out of depression, even if the pain flare had subsided. They might assert that, at least, he didn’t buy a bottle of booze and cope with the pain by getting drunk – or abuse his pain medications and sleep for 24 hours, or worse, yet, kill himself. Compared to any of these reactions, he is coping pretty well.

From this patient perspective, the prior point that he is not coping well might feel stigmatizing. Indeed, the statement that he might be able to cope with the pain better seems to imply that he should have coped with pain better, but didn’t. As such, it implies failure. Moreover, it seems to imply a public acknowledgement of his failure and so therefore shame is the normal reaction.

From the outside perspective, though, the statement that he might be able to cope better with pain is simply a statement of fact – not a moral judgment or accusation. It might even be meant to elicit hope.

Chronic pain rehabilitation providers are often in this position. They evaluate a patient with chronic pain and offer to help the patient cope better with their pain. The provider thinks it would be welcome news for the patient. The intention of the healthcare provider is to say to the patient: you have chronic pain, and even if you can’t ultimately fix the pain, you can always get better at coping with it, get better and better at keeping it from disrupting your life so much; we have a chronic pain rehabilitation program that specializes in helping patients like you cope better – isn’t that a good thing? You should participate in it.

From the outside, the provider sees the treatment option as a good thing, something that would inspire hope, and something that the patient would welcome.

From the inside, though, the patient hears the provider as saying that the patient should learn how to cope better with pain, which implies that the patient isn’t coping well, but should be, and so is failing in this regard. It’s heard as a stigmatizing, open acknowledgement of such failure. The patient subsequently reacts with shame and anger, rejecting the recommendation to participate in the chronic pain rehabilitation program.

The stigma of chronic pain thus keeps patients from obtaining effective treatment.

Chronic pain is known to be difficult to treat. On the one hand, it is chronic. As such, it is not curable. Therapies and procedures designed to reduce pain are, at best, only mildly effective. That is to say, therapies and procedures reduce pain only to some mild extent. They might be worth doing, but they just aren’t real effective. On the other hand, there is no end to how well a patient might get better at coping with pain. Everyday, in chronic pain rehabilitation programs, patients get so good at coping with chronic pain that they return to work, get back engaged in their life, and can do so without the use of opioid pain medications. But stigma can put a halt to such progress. It can make a recommendation to participate in a chronic pain rehabilitation program into what sounds like a moral accusation of failure – that the patient isn’t coping well enough. The patient reacts with shame and anger and subsequently rejecting the recommendation.

Both the provider and the patient leave the appointment frustrated. The provider is frustrated and confused because she thought she was suggesting something good – that the recommendation would inspire hope and optimism for getting better. The patient is frustrated and confused too. How dare the provider be so callous and judgmental? Who’s she to accuse me of not coping well enough? She doesn’t understand what it’s like to have chronic pain.

The stigma of chronic pain creates a divide between providers and patients and adds to the difficulty in achieving effective chronic pain rehabilitation.

Overcoming the stigma of chronic pain

As with any adversity in life, some people with chronic pain cope with pain better than others. It’s not a moral accusation of fault for those who don’t cope so well. It’s simply a statement of fact. It’s just not true that all people deal with natural disasters, cancer, or the loss of a loved one in the same exact manner. Some people deal with such problems better than others. It’s the same with chronic pain.

There might be any number of reasons for it. Maybe it’s because some people have more problems to deal with than others. The sheer accumulation of problems make it hard to deal with any one of them (such as chronic pain) effectively. Maybe some people have had too many problems in the past and so come to the onset of their chronic pain already overwhelmed. Maybe some people’s role models in life didn’t cope well with their own problems and so some patients never learned healthy or effective coping skills to begin with. Maybe some people are simply more naturally adept at coping than others, while others find themselves having to work harder at it – just as there are naturally gifted musicians, athletes, and artists, while others simply have to work harder at attaining proficiency at these skills. The number of explanations might go on and on.

The point here is that the differences in how people cope with chronic pain are not the result of a fault of the person. It’s not because of moral failure. Rather, there are understandable and reasonable explanations as to why some people cope better than others.

Our reactions to these differences is not, and should not be, one of moral accusations of failure for those who don’t cope well. Rather, it typically is, and should be, one of understanding and empathy and a willingness to help teach.

To overcome stigma, providers and patients must challenge themselves to interact with one another without stigma. That is to say, they must challenge themselves to trust one another.

Providers must be patient, understanding, and genuine in their empathy for the difficulties that people can have. In effect, providers need to be trustworthy in their willingness to coach patients on how to cope better. They need to provide reassurance that they do not judge and their behavior has to demonstrate that they are genuine in their non-judgmental stance.

Patients must challenge themselves to be open to feedback. Talk about ways to cope better can be just that – ways to cope better, which are good things. They are not always accusations of ‘why haven’t you already done these things?’ While it’s true that some people, including some providers, are impatient and judgmental of patients who struggle to cope, it’s not true that all people or all providers are judgmental and impatient. Many providers do understand what it is like. They also know how to cope better with pain. They have valuable skills to teach. They are trustworthy. Patients can challenge themselves to trust and learn from the experts. Patients might also challenge their own conceptions that they should have already known how to cope well with pain. Many patients hold themselves to unattainably high standards and feel like a failure even if no one else actually judges them as such. For such patients, they need to challenge themselves to be okay with being in a student role. It is okay to learn from the chronic pain rehabilitation program experts.

Overcoming stigma is not easy, but it is possible. It takes providers and patients working together in a challenging combination of understanding, empathy, and non-judgmental care.

Date of publication: October 26, 2015

Date of last modification: October 26, 2015

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joemcallister4@gmail.com (Murray J. McAllister, PsyD) What is Chronic Pain Fri, 27 Apr 2012 13:12:50 +0000