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.

3 Healthy Ways to Overcome Stigma

If you have chronic pain, you also have to deal with social stigma. Stigma is the disapproval of others for how you are coping with pain. Friends, loved ones, employers, and even healthcare providers can judge you in any number of ways. They might disapprove when you rest or nap, or if you don’t work, or if you take narcotic pain medications. Such critical judgments from others are stigma.

Of course, it doesn’t happen all the time. Nonetheless, it likely happens enough of the time for you to be aware of it or at least its possibility when interacting with others.

Stigma puts people on the defensive. No one likes to be judged. It can lead to shame and anger. In the last post, we reviewed two ways people with chronic pain find themselves defending against stigma. They were:

  • emphasizing the medical aspects of chronic pain and, as such, emphasizing that you have no control over it
  • insisting that you are coping as well as possible given the condition that you have

While understandable, these ways of responding to stigma ultimately back fire in the end.

Let’s look at some ways to overcome stigma that are healthy and effective. Unfortunately, there are no step-by-step instructions for how to do it. It’s actually hard to describe how people do it. The ability to do it, though, involves at least three factors: coming to terms with the moral luck of your chronic pain; developing ego strength; and understanding that no matter how well you are coping with chronic pain, you can always get better at it.

All three of these factors, however, fall under the category of ‘easier said than done.’

The good news is that it is possible. It is possible to deal with social stigma in healthy and effective ways. Most people have to learn how to do it. It can be hard to learn. It takes a lot of practice. And, like most things that take practice, it takes time. Typically, people learn healthy ways to respond to stigma in one of two different types of therapy: in a chronic pain rehabilitation program or in psychotherapy with a health psychologist.

Let’s take each of these three factors and discuss them one at a time.

Coming to terms with the moral luck of your condition

A common response to stigma among those with chronic pain is to deny responsibility for the pain. Say, for example, that your spouse criticizes you for resting too much and not doing enough around the house. A natural reaction is to remind your spouse that you have a medical condition and there’s nothing you can do about it. You didn’t choose it. It happened to you. It’s out of your control. You are simply doing, you might assert, what everyone else does when having a medical condition: you stay at home and rest.

Your argument is that your spouse shouldn’t judge you because you didn’t choose it and it is out of your control. In effect, you are reminding your spouse of an assumption of moral reasoning that we all hold: we cannot be held responsible for something we didn’t choose or have control over. So, what you are basically arguing is that you can’t be held responsible (i.e., judged) for your pain because you didn’t choose it and you are essentially powerless to change the fact that you have it – i.e. you can’t be responsible for something you don’t have control over.

As we saw in the last post, this position has some problematic consequences. If you have no responsibility, it’s because you have no control over the situation and if you have no control, then you are powerless to do anything about it. You stop the disapproval of your spouse (or anyone else) at the cost of maintaining a viewpoint that you have no control and are therefore powerless to pain. It’s a bad way to understand your situation because it leaves you convinced that you are helpless.

It’s a dilemma: how can you overcome being stigmatized without asserting that you are powerless to your pain and therefore not responsible for its management?

It’s an important question because people who cope with chronic pain well see themselves as responsible for managing their pain, and their overall health, for that matter. They take ownership of their health and self-manage their pain. That is to say, they engage in healthy lifestyle changes and ways of coping that make their chronic pain tolerable enough so that they can move on with the rest of their life, engaging in productive and meaningful activities. That’s what good coping looks like.

It’s the chronic pain version of what we all know we should do when attempting to lead a healthy life – assume responsibility for our health and make healthy lifestyle choices, including healthy ways of coping with whatever life throws at us.

While it’s easier said than done, we all know it. We all know that we should assume responsibility for our health and well-being.

But how do you do it when being stigmatized? How do you overcome stigma while at the same time maintaining responsibility for your health and well-being?

Ancient and modern moral philosophers have studied this dilemma and they can offer some insights that I think are helpful for those with chronic pain. The insights involve the notion of moral luck. It’s the notion that much of what happens to us is beyond our choosing, but nonetheless we are still responsible for dealing with it as we go on with life. For instance, we do not choose the family we are born into and we do not choose much of our childhoods, but nonetheless these events have significant influence on us, an influence that reaches far into adulthood. Indeed, our childhood shapes us in countless ways and its influence extends throughout our lives. Were you born into a poor family or a wealthy one? Were your family relationships healthy or dysfunctional? Did you have one parent in your life or two? Did your parents divorce? Were they ever married? Were there any deaths in your family or did everyone remain healthy? So much of childhood is beyond our choosing and in effect is a matter of luck. It’s a matter of luck whether good things happen to us or bad things happen to us. In many ways, these unchosen events shape how we turn out as adults. Despite our lack of choice in all these childhood influences, we are nonetheless responsible for what we go on to do in adulthood. We are all subject to moral luck.

So, how does all this relate to chronic pain and dealing with stigma? You can use the notion of moral luck to understand your condition. It is true that you didn’t choose to have chronic pain, but nonetheless you are still responsible for how you are going to manage it, now that you have it. This way of understanding your condition is helpful in dealing with stigma. You are not to blame for your chronic pain. The stigma is not true! But, nonetheless, you are still responsible for how you manage your pain. And thank goodness too! For if you are not responsible for it, who would be? You don’t want to see yourself as having no control over your pain and health. For one thing, it is not factually accurate. For another thing, if it were true, it would leave you powerless, which in turn leaves you helpless and ultimately hopeless! So, accept the fact that you can self-manage your chronic pain. You just have to learn how. By understanding your condition with the use of the notion of moral luck, you can know that you are not to blame for your chronic pain, but you also know that you can learn to have some modest, yet meaningful, control over your pain.

The notion of moral luck allows you to side-step the social stigma of chronic pain. At the same time, it makes way for learning how to successfully self-manage pain.

Developing ego strength

When you acknowledge that you are responsible for managing your pain, you open yourself up to the possibility of judgment from others. In this post and the last, we discussed how common it is for people to become defensive when judged or stigmatized. Understandably, they become sensitive and angry. In their anger, they deny their ability to control the pain and therefore deny their responsibility for its management. At other times, they defensively assert that they are coping as well as humanly possible, which is another way to respond to stigmatizing statements that they aren’t coping well enough. These reactions are common.

What if, in either of these situations, you maintained your cool when someone questioned how you are coping with pain? What would that look like? Let’s imagine two different scenarios and review what it would be like if you interacted with the other person while remaining grounded.

In the first scenario, suppose someone critically judges you by accusing you of not coping well enough with your pain. You control your sensitivity and defensive anger, and in response assertively state that you do not appreciate the criticism. You ask the person to stop making such judgments. You do not lose it. You don’t cry or let your anger get out of control. Rather, you maintain your cool. Maybe, you acknowledge that everyone can always get better at dealing with problems, like chronic pain, and it may be true that you could learn to cope better, but the judgmental criticism is not helpful. In doing so, you simply state your peace and walk away.

In the second scenario, a healthcare provider begins to talk to you about participating in a chronic pain rehabilitation program. In describing the program, she states that it would help you to learn how to cope better with your chronic pain. Your immediate reaction is to become a little sensitive and think that she is judging you for not coping well enough. For after all, you’ve had a lot of people stigmatize you over the years and your immediate reaction is that your healthcare provider is doing it too. Before you say anything, though, you contain your immediate reaction and think to yourself, ‘No, she’s not judging me… She just trying to be helpful.’ You then ask about her recommendation and you talk about it without feeling offended. In the course of the conversation, you acknowledge that it would be helpful to learn some new ways to cope with pain and to get better at it. By doing so, you get a little vulnerable with your healthcare provider, but, at the same time, you remain strong, as it were, in your vulnerability. You know that it is okay to get help and you remind yourself before rejecting her recommendation that getting help is why you are seeing your healthcare provider in the first place. You remind yourself that everyone needs help, sometimes, and that it’s a mark of strength to acknowledge that you need help and could benefit from learning how to cope better with pain.

In both these scenarios, you demonstrate that you possess ego strength. Ego strength is a term that captures what in everyday language we might call ‘character strength’ or ‘maturity.’ It’s the ability to acknowledge that you don’t know everything and that you can benefit from learning from others. In short, it’s the ability to be in the student role. You can tolerate getting feedback about yourself without becoming ashamed or defensively angry. You take it in and learn from it.

People demonstrate ego strength when they acknowledge that they were wrong about something when apologizing. Workers demonstrate ego strength when they tolerate feedback from their supervisor when discussing how they could do their job better or during their annual reviews. Patients demonstrate ego strength when they acknowledge that they could do better while talking with their healthcare providers about making healthy lifestyle choices.

Now, of course, such discussions are a two-way street. The other person, whether a friend or work supervisor or a healthcare provider, can be more or less respectful and tactful when talking with you about ways to improve what you do. When the other person is good at communicating such information, it is easier to hear. But, you also have a role in such conversations. It’s the role of tolerating such discussions, and acknowledging that you don’t know everything there is to know about the topic, and can learn and improve.

Developing ego strength is also a way of overcoming stigma. When you know that you have room to grow and change, and are truly okay with it, it doesn’t bother you as much when others point it out. When they do it respectfully, your confidence in yourself allows you to be vulnerable and acknowledge that they are right – that you can stand to benefit from working on getting better at coping with pain. When they don’t do it respectfully, your confidence in yourself allows you to tell them that the way they’re talking to you is not helpful – even if it might be accurate in some way. Ego strength allows you to have the confidence that overcomes stigma.

Traditionally, psychotherapy is the place where people develop ego strength. You do so in a trusting relationship with a healthcare provider who helps you to accept feedback about yourself, learn from it, and grow. When it comes to chronic pain patients, such psychotherapy is done with a health psychologist. Developing ego strength also occurs in chronic pain rehabilitation programs, because they have traditionally been a psychology-driven therapy.

You can always get better at coping

In the course of developing ego strength, it becomes clear that the ability to cope with problems, like chronic pain, occurs along a spectrum. There is no endpoint in the ability to cope. No matter how well you are coping, you can always get better at it. This way of understanding coping allows you to overcome stigma.

We have seen how it is easy to respond to stigmatizing accusations that you are not coping well enough by asserting that you are coping as well as possible given the nature of your condition. Now, of course, the stigmatizing accusation is judgmental, disrespectful, and hurtful. So, it is understandable that you respond in some way. But, is this type of response factually accurate?

Patients commonly tell me that they have an incredibly high pain tolerance or that they don’t want to hear about ways to cope better with pain because they are coping as well humanly possible. These kinds of statements cut off the possibility of stigma, but they also cut off all discussion of the possibility of learning how to cope better too. And are they really factually accurate? Have such persons really reached an endpoint in their ability to tolerate and cope with pain? While their reactions to stigma are understandable, I think it is more factually accurate to see that, no matter how well people tolerate and cope with pain, they can always get better at it. There is always room for improvement.

Moreover, there is no shame in acknowledging in acknowledging where you are at on the coping spectrum. We are all in same boat, as it were. Wherever we are on the spectrum of coping, we can all get better at coping with adversity!

As such, it is most helpful to understand the ability to cope as something that occurs along a spectrum of coping, where there is no ideal endpoint. Wherever you are on the spectrum of coping, you can always get better at it.

The ability to cope with problems is like any skill. People don’t reach an endpoint in their ability to play a musical instrument or play a sport. A musician or athlete can always improve, no matter how good they get. The same is true with the ability to cope with adversity. The more you learn and the more you practice, the better you get at it.

So, what do you do when people disrespectfully accuse you of not coping well enough? Well, let’s review. With the help of your healthcare providers, you have worked through the moral luck of your situation. Over time, you have become confident that you are not to blame for your chronic pain, but you have also accepted ownership of your health and well-being. As such, you have been working with your healthcare providers in learning how to self-manage chronic pain. You have developed the strength to be in the student role with your healthcare providers. You have accepted their feedback and insights about you, and have learned from them, and have grown. You now have the confidence to know that it’s okay to be still learning. You know that you have come to cope better and better, but in reality there is always more to learn. You are now hopeful in ways that you haven’t been in a long, long time: you know that your future is one of continuously getting better and better at self-managing pain, as long as you keep learning and practicing. So, with all this hard work behind you, and with your new-found strength and confidence, you tell the people who disrespectfully judged you something like the following: you say that, while it may be true that we can all get better at coping, it is not right to judge and that they should stop being so judgmental. You then walk away without shame or anger, but with the confidence that you are on the right track.

Author: Murray J. McAllister, PsyD

Date of last modification: April 15, 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