Updated: Mar 3, 2022
By Nefeli Lambrou and Amber Daw
This blog post is part of the LUNA Science Communication Series, a series where research relevant to Disabled folks is broken down for Disabled folks. Nefeli shares research carried out for her psychology dissertation on chronic pain and camouflaging, and Amber reflects on how this research fits in with her lived experience.
You can also listen here: https://open.spotify.com/episode/4E0Fg58rn3EiVdsMFuPs59?si=dfd3eff7eca94287
While pain itself, when acute and brief, can protect us from potential bodily harm, chronic pain persists despite apparent healing of the initial injury and no longer serves any evolutionary or protective purpose. Chronic pain stops being a symptom, and becomes an illness itself. Plentiful academic and clinical research surrounds chronic pain due to its debilitating impact on economic, social, and emotional facets of daily life, as it has been linked to mobility restrictions, opioid dependency, anxiety and depression and poor perceived health. Paradoxically, there appears to be a possibility for ontological similarity between the behavioural strategies used by autistic people to ‘mask’ their autistic traits and those experiencing chronic pain. Camouflaging refers to specific behavioural patterns and strategies employed by some autistic individuals to suppress or disguise autistic features, deemed to be socially ‘undesirable’. Camouflaging has been widely reported by the autistic community, with growing evidence suggesting that it operates as a response mechanism to society’s pressure to conform into a neurotypical world.
These ontological similarities lay within the bounds of social stigma, disbelief, and frustrations within both communities. Funnily enough, autism ‘awareness’ campaigns propagate societal stigma by describing autism as being a ‘kidnapper of children’ and ‘a living nightmare for families’. This stigma drives autistic individuals to perfect their camouflaging strategies to such a level where they may face comments like ‘oh but you don’t look autistic’, which essentially sets up a vicious cycle of stigma and disbelief where the autistic person may constantly feel a pressure of either doing ‘too much’ or ‘too little’ leading to mental exhaustion and frustration. Similarly, due to the invisible nature of pain, people living with chronic pain also deal with continuous disbelief by medical professionals and familial circles alike. Paired with effortful and long-drawn attempts to find a cure for their condition, this leads to a double-edged sword situation where the frustrations caused by external factors (internalising the anger) may generate more physical pain, and in turn externalising that anger can lead to breakdown of relationships and maladaptive health habits. On the bright side, the concept of pain acceptance refers to the psychological process of letting go of the struggle with the pain and learning to live life despite it. Research has identified two crucial components which facilitate pain acceptance, namely Pain Willingness (attitude change) and Activity Engagement (behavioural change).
Considering the parallels drawn between autism and chronic pain, my supervisor Dr Chiara Horlin and I, thought it would be valuable to quantitatively study social camouflaging as a phenomenon within the chronic pain community. We also set out to identify how such a phenomenon operates within the context of disability caused by pain, and whether it promotes pain acceptance attitudes or not. We hypothesised that H1) chronic pain respondents with higher pain disability rates report higher rates of camouflaging behaviour, H2) higher pain disability would predict either higher or lower pain acceptance and H3) pain acceptance mediates the relationship between pain disability and camouflaging.
The study followed a cross-sectional, within-subjects design with data collection being based on online voluntary adult participants who have experienced chronic pain (consistent or recurring pain exceeding the three-month mark). Participants completed online questionnaires assessing three variables: pain disability, pain acceptance and camouflaging rates. Pain Disability and Pain Acceptance were assessed using previously validated self-reporting scales, namely the Pain Disability Index (PDI) and the Chronic Pain Acceptance Questionnaire – Revised (CPAQ-R). However, for measuring camouflaging scores, the twenty-item self-reporting Camouflaging Chronic Pain Questionnaire (CCP-Q) was developed for the purposes of the present study, scored on a 7-point Likert scale. It was adapted from Künne and Horlin (in preparation), who investigated social camouflaging in autistic and non-autistic populations. The newly adapted measure exhibited good psychometric properties (Cronbach’s alpha = .85). Statistical analyses revealed that in accordance with H1, higher pain disability scores predict higher camouflaging scores, while no relationship was identified between pain disability and pain acceptance (H2) contrasting previous research. Mediation analyses showed that pain acceptance did not mediate the relationship between pain disability and camouflaging (H3). Further, post-hoc regression analyses revealed that both pain disability and pain acceptance are significant predictors of camouflaging strategies.
The results of the current study are partly consistent with existing research with long-standing and important theoretical concepts identified through qualitative research such as stigma, disbelief and frustrations which are thought to perpetuate the negative effects of chronic pain on daily life and psychological wellbeing. Our results show preliminary evidence of individuals with chronic pain using camouflaging strategies, transcending the autism domain. However, we did not find pain acceptance to mediate the relationship between pain disability and camouflaging, but rather operating as a predictor of camouflaging. This may suggest that perhaps camouflaging in chronic pain can be viewed under a more positive light than the negative scope it has taken within autism research. Experimental and anecdotal evidence of experiences described by chronic pain individuals paint a picture of an unaccommodating and sometimes hostile society towards people with physical or mental needs that diverge from the ‘norm’. By extension, it would make sense that chronic pain patients may engage in an effortful strive to conceal pain behaviour to sustain an appearance of ‘normality’ and further, preserving their own sense of efficacy and social competence. Theoretically then, this effort to conceal pain behaviours (grunting, limping, facial expressions), would be solely rooted in negative feelings. Unforeseeably so, our results show that pain acceptance -an inherently positive concept, predicts higher use of camouflaging behaviours. So, what may be the case then?
Well reflecting on our findings, results may indicate an important, yet unexpected positive function of camouflaging within chronic pain populations: adaptability. Havil Carel argued that pain can create a scheme within which the patient can develop a “highly personal and creative dimension of adaptability”. Pain research converges to the idea that people with chronic pain are more attuned to pain-related stimuli and have difficulty disengaging from them. It appears the more attentional resources are given to pain, the patient enters a state of constant hypervigilance and anxiety. Based on our results and the literature, we propose that although camouflaging may be motivated by concepts commonly viewed as negative (stigma, delegitimisation, frustrations), it can be edifying in a person’s life though facilitating activity engagement, a crucial component of pain acceptance. Further, we speculate the role of attentional shifts away from pain-related information through camouflaging as a potential mechanism.
If our results are true, two main clinical implications may apply in both clinical assessments and potential treatments offered. Firstly, the clinician’s perspective of the true lived experience of pain of a patient should shift towards discerning the actual from the camouflaged pain behaviours, thus allowing for more accurate assessment of the patient. Secondly, if the clinician may suggest more specific psychotherapies targeting mindfulness, attentional shifting, and reframing to allow better control of their camouflaging techniques and harnessing the full edifying potential they may offer.
Amber’s reflection …
As someone who has experienced chronic pain in some form or another for the past six years, reading Nefeli’s piece it felt as though some puzzle pieces were slotting into place in my brain. I had never considered the camouflaging of chronic pain as being in a similar category as masking is within the autism community. That distinction is something that really resonated with me. This then developed as the piece continued, giving camouflaging in chronic pain patients a multifaceted role. Sometimes, it acts as a way by which one simply tries to fit in with societal norms and portray efficacy in a society that all too often deems you as inferior. In other situations it can be used to show a degree of pain acceptance, living alongside the pain. In attempting to camouflage pain individuals are allowing themselves to engage in activities despite pain, which can be beneficial for both mental health and levels of pain acceptance.
In the wider context of living with chronic pain, much of what Nefeli addresses is reflected in my experiences of both treatment for my chronic pain and my own camouflaging behaviours. Within treatment for chronic pain, perhaps better referred to as management, much of my experiences are underpinned by the idea that you can engage in activities even when your pain is being troublesome, it has a focus on adaptability and having a willingness to try a non conventional approach to a task to make it work for you. With regard to my own camouflaging behaviours there are definitely parallels between the reasons outlined by Nefeli and my own thoughts. Something I would add is that for individuals with chronic pain we never hit a zero on the pain scale, therefore if we waited for this to occur we would never get anything done. Something that cannot be the case when we are individuals with lives to lead and things to achieve.
About the authors:
Hi!! I’m Nefeli and I have just graduated from the University of Glasgow with a First-Class Honours BSc degree in Psychology with Neuroscience Specialism. I am doing an MSc in Health Psychology in September at King’s College London. My passion is to help people with physical illnesses manage them as efficiently as possible, from a psychological wellbeing standpoint. My undergraduate thesis focused on chronic pain, which is something that lies very close to my heart due to personal experience. I strive to continue my research into my Master’s and hopefully identify useful concepts or create tools to help clinicians aid patients in better managing chronic illnesses.
Hi, I’m Amber. My pronouns are she/her and I am halfway through my second year of an Education Studies degree. I am also a part of LUNA’s media team and really enjoyed providing a reflection on this piece as a person who has chronic pain. Away from studies and all things LUNA I am a massive bookworm and tea enthusiast who loves nothing more than being by the sea.