On a daily basis, she has back and right leg pain, she tells me, but on some days, she can have pain all over. She has undergone two lumbar spine surgeries, which she expresses were successful even though her pain continued and in fact worsened over time. She explains the discrepancy by stating that the “degenerative disease in my spine continues to get worse.” She has undergone various series of epidural steroid injections, which, when she first starting getting them, were helpful in that they produced about a week’s long reduction in pain, but she states now, “They don’t work anymore.” She reports having had a neuroablation procedure that unfortunately “made things a bit worse.”
My patient tells me that her low back pain began during the second pregnancy of her three children. At first, it came and went, but over time it came to stay. She began to seek healthcare for it eight years ago with her primary care provider. At the time, her primary care physician a short-acting opioid three times daily and recommended that she walk for about twenty to thirty minutes, four times a week. She indicated that her primary also reassured her that her pain would dissipate as it had in the past. After her third refill request, her primary care provider re-evaluated her and ordered an MRI scan with subsequent referral to a spine surgeon. Her first lumbar surgery, an L5-S1 fusion, reduced the pain initially, but after having returned to full-time work for a few months the pain worsened. With an increased dose of opioids, she attempted to return to work yet again, but ultimately she had to stop working. Her burgeoning career ended. Since having given up attempts to return to work, she underwent another fusion. She repeats to me today that it was successful, but it’s not clear to me how it’s been successful. She has remained distressed and disabled by pain and it continues to require the use of opioid medication that’s been increasing in dose over time. I decide against asking further about the topic and move on with the evaluation.
Understandably, the loss of her career has been a persistent source of grief and loss for her. To make things worse, with some individuals of her extended family, this loss of work has been a source of stigma too. She professes a number of times she loved her job. She implies, with an endearing sense of humility, that she was good at what she did. Between the lines, it seems clear that her self-esteem seemed grounded in her highly adept multi-tasking abilities to raise three children, be a loving and helpful spouse, and work a 40+ hour professional position in a career for which she had gone to college. By all accounts, she was really good at all of it and she was rising through the ranks of her organization. Until, her pain became too much.
But then, she became caught between either maintaining the career she loved with increasing back pain or reducing her back pain and acquiring a persistent grief and stigma over giving up her beloved career.
Again, I don’t challenge her reported history and the dilemma she experiences. I have no reason to do so, as her experience is so understandably common. In the interview, I repetitively try to empathize with her and show her that I understand and do not judge.
Nonetheless, throughout the interview, in what seems like anticipation of potential criticism from me, she recurrently stresses to me that she has tried everything in order to remain or return to work – multiple surgeries, numerous interventional procedures, multiple physical therapies, occupational therapy, and increasing levels of opioids. She persistently expresses to me how much she loved her work. She says a number of times that she would return to work in a heartbeat if she could find something that would reduce her pain.
The only thing that she identifies as at all helpful is her “pain medicine,” by which she means opioids. She acknowledges that the opioids haven’t helped her return to work, but stresses that it’s because her pain is just too great. She volunteers often in the interview that they “take the edge off” and that they “allow me to function enough to get my kids off to school and keep the house running.”
Like the fact that she’s not working, my patient seems vulnerable about her use of opioids. She acknowledges that she’s becoming quite tolerant – she’s now on moderately high doses of both long-acting and short-acting opioids for pain. Nonetheless, she recurrently stresses how bad her pain would be without them. She also asserts a number of times that she’d give them up in a minute if there was something that would get rid of her pain, but as her treatment history demonstrates, she’s tried many procedures and therapies and nothing has worked. So, she’s caught in yet another dilemma: she has to take something that she doesn’t want to take.
My patient offers these repetitive assertions without any prompts or inquiries from me. Throughout the evaluation, I never challenge her reported inability to work or the necessity of her use of opioids. Rather, I maintain a friendly, neutral, and non-judgmental demeanor.
We near the end of the evaluation and it is customary at this time to discuss a proposed treatment recommendation as well as other potential treatment options from which she can compare and contrast the proposed recommendation. Other than my experience of having performed this kind of evaluation countless times before, I have no indication that the ensuing discussion will be anything but collaborative. For indeed, because of her repetitive expressions of distress about both her job loss and the necessity of having to take of opioids, I might have every reason to believe that she’ll welcome my recommendation to transfer her care to our clinic, as we specialize in the things that she finds most distressing: her persistent intolerable pain, her resultant disability from work, and the fact that at this time she needs opioid pain medications to manage her pain. What we can offer her, in other words, is the opportunity to have a team of supportive, non-judgmental experts help her to gradually acquire the abilities to self-manage pain without opioids and return to work in some meaningful capacity – both of which are things that no other pain clinic that she’s previously seen has offered her. So, given her repetitive assertions that she’s tried everything and so must remain on opioids, I can offer her hope that we have a therapy that she hasn’t yet tried, which allows her the opportunity to learn how to manage pain without opioids.
Given my past experiences, however, I approach the recommendation in a gentle manner. I feedback to her my understanding of the dilemmas she has faced and empathize again with how anyone would find such problems difficult. I want her to know that I understand – that I get it. I then talk about her treatment history – the different types of surgical, interventional and opioid management that she has had. I want to demonstrate that I’ve been listening and know the many different procedures and therapies she has had. I review that none of them were unreasonable, and in fact that they all have had their time and place. I then change the focus of the conversation to the fact that there has always been another type of pain clinic, called chronic pain rehabilitation, which pursues care differently, just as a surgeon is different from an interventional pain physician, we are yet again different from either, though we treat the same conditions. I review that in our healthcare system often times patients tend to get referred to our type of pain clinic after the other types of treatment have been tried and failed, which seems the case for her.
I review with her that, while we don’t typically cure people of their pain, we have an interdisciplinary team of providers who essentially serve as her coaches and we slowly and gradually teach folks just like her how to self-manage pain so successfully that they no longer require opioid medications to manage their chronic pain. I stress that it takes time and effort, but with the right kind of coaching, it’s possible to learn to self-manage pain without opioids. We also help people find some type of meaningful, structured activity to pursue, such as work, school or volunteering, which helps folks just like her get back on a track in life that they feel good about again. I review that she may or may not be able to return to her previous position, but through a combination of creatively coming up with options we might be able to identify some type of meaningful work that she could strive to obtain.
I also share with her that we have been maintaining outcomes on our program for years and that what we find is that our patients have a more than 80% reduction in opioid use even a year after they completed the program. I also tell her that 50% of our patients return to work, volunteering, or job retraining/school. I add at the end of my gentle and hopeful message that on average our patients report 10% less pain then when they started, even after they’ve achieved these other gains. In other words, on average, our patients have 10% less pain even though they are no longer on opioids and have significantly increased their daily activities, by returning to work or school.
From my chair in the consulting room, this message can be heard as a beacon of hope – that she does not have to settle for the life she has; in other words, with hard work, coaching, and learning, she can get better. She will, of course, continue to have pain, but she will likely have less pain, be off her opioids and engaged in some type of regular, meaningful activity that allows her to feel proud of herself again. It’s a hopeful message that details a way to get better while grounded in the realism that she truly has a chronic – lifelong—pain condition.
As I near the end of this feedback and recommendation, I can tell, however, that from her chair, my message is not a beacon of hope at all. It began when her legs started to fidget. Then, tears began to well up in her eyes. By the time I finished, she had become intensely vulnerable and subsequently very angry.
I could tell that the good things our clinic has to offer had become bad things.
Now, the patient that I describe in this encounter is not an actual person. I made her up. She’s not, though, no one. She could be most any one of my patients. She could be a man in his thirties or a man in his fifties or a woman in her sixties. He might have recurrent migraine. She might have had persistent neck pain.
The point here is not the details of the individual’s presenting problem, or their gender, or whether the individual has children in school or not. The point is how an individual hears and tolerates feedback about themselves and the recommendations they receive. It’s also about one’s capacity for hope – that hope often lies in the eye of the beholder.
Because we are a clinic that specializes in people with persistent pain who are disabled by pain and/or reliant on opioids, we tend to see a lot of patients who fit these descriptions. Sometimes, we see patients who welcome the help we can provide. Nonetheless, we often see patients who become threatened by the help we provide.
It all tends to boil down to two things: one, the degree of shame, or vulnerability, that patients have for finding themselves in the position that they are in, whether it be reliant on opioids or unable to work or both; and two, the degree to which they can openly acknowledge this shame in some constructive manner.
When people have high degrees of shame and significant difficulty acknowledging it, they tend to experience stigma when others broach the sensitive topic even when no stigma was ever intended. As a result, they tend to shun open discussion of their role in their health, and instead engage in discussions of how there's nothing more to do but what they are doing. This impassable stance thus comes to justify the sense of vulnerability, or shame, they feel for engaging in the use of opioids or disability or both. I didn't choose this; I have to do this.
From this perspective, my patient might make any number of counter-arguments:
- My surgeon told me that there’s nothing more that can be done.
- My doctor told me that I’d probably have to be on these medications for the rest of my life.
- I have a degenerating disc disease. It’s just going to keep getting worse. You‘re not going to cure that!
- If pain rehabilitation programs are as successful as you say they are, why wouldn’t my doctor have referred me earlier?
- Look, I’ve done everything humanly possible to get back to work. If it’s as easy as you say it is, then you aren’t seeing people like me.
- I have the highest pain tolerance of anyone I know and my pain would be intolerable without pain medicines.
- I don’t know who you’re seeing in your program, but I’ve got real pain!
- Every doctor I’ve ever seen has reassured me that it’s okay to be taking pain medicines (i.e., opioids) and to be on disability, why are you questioning it now? You talk to me all calm and gentle like, but you’re actually the meanest doctor I think I’ve ever seen!
- You think I want to be this way? I can’t believe I’m sitting here listening to this.
- Are you in pain? I know you’re not, because if you were you wouldn’t be saying the things you’re saying.
- You don’t have my pain! You have no idea how bad it is. How dare you say that I can learn to cope with it. If you had my pain, you’d know I'm coping better than anyone possibly can under the circumstances!
Such responses and more are common reactions to a recommendation to participate in a chronic pain rehabilitation program where patients learn how to self-manage pain and return to work. The recommendation, of course, is meant as a good thing, a beacon of hope, that with hard work, openness and motivation, they can learn to achieve these goals. Implied in these responses to the recommendation, however, is the rejection of the notion that patients can do anything about their pain. The above reactions imply that patients have done all that can be done; they’ve learned all that they can learn. They've done everything humanly possible and so are beset with having to be on opioids and/or disability. The reactions are all versions of these implications -- dare not question the conclusion that remaining on opioids and/or disability is the only possible things left, because I didn't choose this -- I have to do this.
It is, however, these very conclusions that come into question with a recommendation to participate in a chronic pain rehabilitation program. The recommendation is indeed an affirmation of the pssibility of change for the better -- that, with effort, they can come to cope better with pain -- so good, in fact, that one wil be able to self-manage pain without opioids and return to some meaningful, structured activity, such as work. One might think that this message is a good thing – there is still more to be done and so therefore there is still hope!
Why shun, then, this possibility of hope? Why shun the possibility of having a greater sense of control – even a potential control that one doesn’t yet have?
Shame and pain
It is shame. It's the sense of shame that comes when people recognize that they have a role in their health and in the conditions in which they find themselves. This shame is threatening. In some ways, it's safer to view oneself as powerless. Acknowledgement of power – even the power to get better – cuts both ways.
Is it a good thing or bad thing? It depends on the perspective. Good things can easily become bad things.
In early psychoanalytic thinking, Freud (1943) called it resistance and considered it one of the hallmarks of a mental health, as opposed to a physical health, condition. Cancer patients, for instance, don’t tend to resist the recommendations of their oncologist, but will rather readily do most anything to beat their cancer. Later Kleinians (cf. Ogden, 1990) focused on patients’ sense of vulnerability and the shame that underlies it. They recognized that any one of us, with whatever health condition we have, can move fluidly in and out of perspectives that we take when interacting with others. Sometimes, we interact in strong and mature ways and so accept feedback as constructive, while other times we become vulnerable and so hear the very same feedback as shaming. As a result of the latter, we can become defensively angry or offended. In such scenarios, we tend to resist the feedback, come to see the person who is providing it as being judgmental or incompetent or mean. In more contemporary times, Miller & Rollnick (2013), for example, call it ambivalence. Ambivalence captures the fluidity of perspectives that we can all take: we all might recognize the experience of wanting to start an exercise routine and not wanting to at the same time or getting feedback from a healthcare provider about the need to lose weight as a realistic observation or as a criticizing judgment to which one responds with resistance to lose weight. These common perspectives can be taken with most any health condition. It’s one of the reasons that we might advocate to no longer split up health conditions between mental and physical health, but rather recognize that all health conditions are biopsychosocial in nature.
Nonetheless, we don’t have to use complicated conceptualizations to describe what occurred between my patient and myself when giving her feedback and a recommendation. We might just call it the experience of when good things become bad things.
Freud, S. (1943). A general introduction to psycho-analysis. Garden City, New York: Garden City Publishing.
Miller, S. & Rollnick, W. R. (2013). Motivational interviewing: Helping people change, 3rd edition. New York, New York: Guilfard Press.
Ogden, T. H. (1990). Matrix of the mind: Object relations and the psychoanalytic dialogue. Oxford, UK: Jason Aronson.
Date of publication: August 28, 2017
Date of last modification: April 7, 2018
About the author: Dr. Murray J. McAllister is the editor at the Institute for Chronic Pain (ICP). The ICP is an educational and public policy think tank. Our mission is to lead the field in making pain management more empirically supported and to make that empirically-supported pain management more publicly acessible. Additionally, the ICP provides scientifically accurate information on chronic pain that is approachable to patients and their families.