How 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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