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The damage of psychological explanations of illness


Photo by Seyi Ariyo on Unsplash


This blog article topic is in part sparked by an enlightening discussion I had on Instagram in response to my dissemination of a systematic review my colleagues and I published (see previous blog). The review explored the role of psychological factors in pain in endometriosis. Although a lot of the evidence of an association was correlational, and I did acknowledge this clearly, the language I used to describe the link at times intimated a direction. For example, “the more anxious and depressed participants felt, the more they reported feeling their physical… functioning was impacted”. This phraseology would suggest that emotional distress is the driving factor, when in fact, what is more likely is that pain is the driving factor for emotional distress. This was pointed out to me.


Through the discussions I had with various women who had endometriosis, I realised that I had fallen into the trap I am adamantly against falling into: psychopathologising women’s physical health conditions. And it was as simple as the subtly of the phrasing I chose to use. This surprised me, to be honest. I spend much of my time talking directly with women who are adversely affected by chronic conditions, advocating on their behalf of them. I have spent huge amounts of time creating materials and training for healthcare professionals so as not to do what I ended up doing. The reason I am sharing this (other than for transparency) is because I think it is important. Consciously, cognitively, I am so far away from the narrative that women’s pain is all in their heads (see previous blog posts and publications of mine) and yet, I chose to use this phraseology. It made me think there are two key things at play here: 1.) Insidious unconscious bias, infiltrated from a lifetime of societal messaging about hysterical weak women and the deligitimacy of (largely) invisible chronic illness. For this, I feel disappointed with myself. 2.) The slippery slide from biopsychosocial to psychopathologising. Let me elaborate on the second in a bit more depth.


My view of health (all health, including being completely healthy, to having a terminal health condition and everything in between) is that it is best considered holistically from a biopsychosocial approach. What that means is, as well as gaining an understanding of the physiologic processes at play (e.g. tissue damage, structural abnormalities, changes in cellular behaviour etc.) we also need to take into account the social context within which the health condition is being experienced. Taking social context into account encompasses a broad range of things to acknowledge; from someone in a third-world country who has a potentially manageable disease such as HIV/Aids but has no access to the biologics needed for this, through to a woman who experiences excruciating pelvic pain and is seen as a hysterical over-exaggerator by the physicians she consults. In both scenarios, social context is fundamental to the health condition in very different ways. Principally in these examples, social context determines treatment access.


Social context also has an impact on health due to its interrelationship with psychological experiences. To explore this further I consulted studies that have looked at this in depth. There were so many papers, so I think I will do a bit of a series on this. There is a broad consensus that negative experiences of communication about health from physicians resulted in negative health outcomes via direct and indirect pathways [1]. For the purpose of this blog, I focussed in on one particular study which was a narrative review of the impact of disbelief in chronic pain[2]. This was a collation of all of the qualitative studies that had been conducted exploring this question. Startlingly, only 6 studies had been conducted across all the various pain conditions. This alone perhaps demonstrates the lack of acknowledgement of such an important issue.


Three key themes emerged from this data:

  • The experience of stigma and disbelief

  • Isolation as a consequence of stigma and disbelief

  • Emotional distress as a consequence of stigma and disbelief


The experience of stigma and disbelief

The authors make the simple and poignant point that to experience pain and not have that pain believed is to experience stigmatization. The distinction was made between “felt stigma” and “enacted stigma”. Felt stigma describes where individuals have a sense of being disbelieved without having overt experiences of disbelief being expressed. We can liken this process to that of “aversive racism” [3]. This is where individuals experience subtle discrimination that is contextually sensitive so that others hearing about an exchange may not perceive it to be discriminatory. It occurs due to the fact that individuals inflicting the stigma consciously endorse ideas of equality and regard themselves as without prejudice. However, at the same time they “possess unconscious negative feelings and beliefs” that lead to subtle signs of discrimination or stigmatising. Certainly, research demonstrates unconscious bias amongst healthcare professionals towards women experiencing pain, such that they regard them as weak or hypochondriacal.


In addition to felt stigma, people with an invisible illness can also experience “enacted stigma”, which is overt, observable stigmatising actions. Examples from the review include one participant having medication thrown at her by a nurse and being told that she was “costing the NHS far too much money”. Other people are told their symptoms are their fault due to weight, not managing their stress (more on this later) and trying to elicit secondary gains such as state benefit.


This can lead to people having their personal identity challenged. This was one of the subthemes of the review. It discussed how multiple stigmatising encounters can lead to individuals having their personal identity challenged. This comes with the experience of shame and humiliation; “their shame is the shame of being wrong about the nature of reality”. Rejection and isolation result from this. People may be rejected by others, or find others withdrawing from them, or, in an attempt to avoid rejection and stigma, people may elect to withdraw themselves. When people experience pain that is invisible to others, it can be harder for those others to emotionally connect with the individual experiencing pain. Furthermore, when people do not possess a diagnosis, they can feel that they need to shut off part of their experience from others, predicting that it may come with confusion, judgement and an increased sense of isolation

as people fail to get their heads around the situation. Indeed, another subtheme in the review was centred around the tricky balance people face of adequately explaining their experience and being accused as complaining too much or being weak for not better tolerating their experience. The balance means that often people experiencing pain and chronic illnesses feel guarded in how much they talk about their health.


The Stigma of Psychologic Explanations

An important subtheme in this research that would do psychologists, allied health professionals and physicians well to note, is how psychological explanations of an individual’s physical illness is often experienced as stigmatising. The review notes that the Cartesian mind-body divide within medicine and a primarily biomedical model of healthcare contribute to this. That is to say that medicine generally considers that all illness or disease that is “credible” or “legitimate” must have an observable organic cause. Without physical pathology, the default can be for the assertion that “if the cause is not in the body, it must be in the mind.”


Of course, the reality is far from this. Decades of research demonstrating the importance of a biopsychosocial approach to health in the fields of psychoneuroimmunology and neuropsychology (and of course health psychology) evidence that the two are intertwined. The seminal study of Keicolt-Glaser et al [4] showed how a group of chronically stressed carers receiving a punch biopsy wound when compared to a group of non-stressed participants took on average 9 days longer to heal. This led to an explosion of research into this area looking at precise pathophysiological mechanisms between psychological stress and altered immune system functioning.


However, in a dualistic model of medicine (and indeed wider society), it stands to reason that psychological explanations for pain and illness can become over-generalised, misconstrued and with that, highly stigmatising. Adding to this is the fact that many patients report having their symptoms discredited and ignored when healthcare professionals consider the illness to be of psychologic origin. Again, in previous blog articles and posts on Instagram, I have described the misogyny within healthcare structures that see women as weak, hysterical and hypochondriacal. I have also heard worrying anecdotal accounts of women being refused medical treatments such as antibiotics, diagnostic procedures (such as laparoscopies and scans) and pain medication, due to healthcare providers considering the women presenting with ailments to be anxious or depressed. Again, looking at previous reports such as The Cumberlege Report, we have seen women refused treatment and ultimately dying or suffering severe procedures and disability due to not being believed.


Emotional distress as a consequence, not cause

The third theme of the review was the exploration of the distress caused by disbelief. Cruelly this distress can see individuals in a Catch22, as others perceiving the distress to cause symptoms can interpret understandable and proportionate distress arising from pain and disbelief as “proof” of a psychologic aetiology. “See, I told you she was depressed”. It puts patients in a powerless situation. They are unable to demonstrate the reality of their chronic pain and even less so, the more distress they experience in the face of stigma and disbelief.


Understandably, this can also cause substantial frustration and anger. This was highlighted in a quote of a young woman in one of the included studies “The worst thing about not having a diagnosis is that a lot of people treat you like a drug addict. I hate those people! People like that do not know what it means to be in pain” [2]


This quote demonstrates the “us versus them” position that can develop as patients fall victim to a stigmatising healthcare system. This can result in opposition as individuals feel forced to adopt a fighting stance. This is important to note in healthcare consultations as doctors can experience this and readily mislabel it as “personality disorder”. Unfortunately, I have also anecdotally witnessed this.


Take away actions for healthcare professionals

This is a brief consideration of a very in-depth review and complex topic area. Here are some key practical takeaways from this information tailored for healthcare professionals:

  • Believe your patients’ account of their physical symptoms, regardless of the diagnostic markers. Support them to find answers.

  • Remember that health is not either psychological or physiological. It is ultimately an interaction no matter what the health condition. So if you think psychological support could be beneficial, don’t present this as the only option and…

  • Adequately explain the reason for suggesting psychological support if you feel it would be useful. This involves reassuring patients that you are not suggesting this at the expense of further exploration of physiological symptom management or diagnostic explorations. It may also be a validating way of acknowledging that having symptoms is emotionally burdensome and sometimes getting support to navigate that can be helpful. Psychoeducation about the physiological impacts of psychological experiences are also fundamental. If you do not have knowledge about this, seek it out. My Instagram is a good place to start.

  • Give patients a choice. Psychological options for support should not be forced on patients. It should not feel punitive. It should not be a means of accessing further treatment options (all of which I have heard accounts of). This all leads to further stigmatisation and ultimately would not provide appropriate psychotherapeutic conditions.

  • Don’t interpret distress or anger as automatically indicative of a psychological origin of symptoms. Understand that the relationship is very likely the other way round.

  • Reflect on your own response to patients and explore whether they have triggered any automatic assumptions within you. This does not make you a bad person. It makes you a human. Explore these assumptions further. Consider seeking unconscious bias training or conferring with other multidisciplinary colleagues.


I want to close this blog by again thanking all those of you that engaged in a thoroughly important dialogue with me over on my Instagram. You can catch this discussion here.


References

[1] Zill, J. M., Christalle, E., Müller, E., Härter, M., Dirmaier, J., & Scholl, I. (2014). Measurement of physician-patient communication—a systematic review. PLoS one, 9(12), e112637. [2] Newton, B. J., Southall, J. L., Raphael, J. H., Ashford, R. L., & LeMarchand, K. (2013). A narrative review of the impact of disbelief in chronic pain. Pain Management Nursing, 14(3), 161-171. [3] Dovidio, J. F., Penner, L. A., Albrecht, T. L., Norton, W. E., Gaertner, S. L., & Shelton, J. N. (2008). Disparities and distrust: the implications of psychological processes for understanding racial disparities in health and health care. Social science & medicine, 67(3), 478-486. [4] Kiecolt-Glaser, J. K., Marucha, P. T., Mercado, A. M., Malarkey, W. B., & Glaser, R. (1995). Slowing of wound healing by psychological stress. The Lancet, 346(8984), 1194-1196.

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