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
- Physical disabilities
- 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