The Stigma Of Living With Neuropathy

Today's post from instituteforchronicpain.org (see link below) is an important one and definitely worth a read. It applies to all chronic pain patients but is especially applicable in our case as neuropathy patients. It talks about the stigma we face from the outside world when it comes to living with chronic pain conditions. Many of the causes of neuropathy carry their own stigmas in society (alcoholic, diabetes, HIV-related neuropathies for instance) so we're already aware when society casts its disapproving eye over our existence. However, living with daily pain seems to test other people's patience more than anything. This article will be recognisable to many people in this situation and is very definitely worth a few minutes of your time. See how to beat the stigma tomorrow!

On the Stigma of Living with Chronic Pain
Author: Murray J. McAllister, PsyD Date of last modification: 4-1-2013

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 feeling that I am criticizing them by stating that chronic pain rehabilitation can help them and making the recommendation to participate in our 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 understanding 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 in 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.

http://www.instituteforchronicpain.org/blog/on-the-stigma-of-chronic-pain/