Chronic pain acceptance does not equal accepting chronic pain

My awareness of acceptance came with my breast cancer diagnosis: how I accepted the cancer, the therapies, their effects, and my new life-context. Yet it took another three years, a doctorate in counselling psychology and working in a chronic pain clinic to journey into acceptance from the position of a scientist-practitioner. Whilst working with hundreds of people, I received many challenges to my contemporary yet naïve understanding of acceptance. Those critical thinkers, those pain-bearers, were instrumental in introducing a more differentiated concept in my understanding: chronic pain acceptance does not equal accepting chronic pain.

What is acceptance?

Jon Kabat-Zinn (1990) echoed Carl Rogers (1995) by saying that self-acceptance is the pre-condition for healing, growth and change. We are urged to perceive experiences as they are, rather than judging them as good or bad. We are informed that acceptance has a hierarchical structure (Hayes, 1999), with its highest form being 'radical acceptance', defined as an ability to embrace the here-and-now fully with our mind, heart, body and soul (Linehan, 1993, 2015). Acceptance is also presented as a choice and something we should choose to alleviate the impact of chronic illness (Dougher, 1994). In other words acceptance, as presented today, has various implicit properties. It is beneficial, hierarchical, and our choice to make.

Acceptance of chronic pain: the researcher, the clinician, the pain-bearer

…it's 24 hours. 24/7. Everything I do is with pain, everything! Brushing my teeth, having sex, having err, drinking beer, wine! Going to the supermarket, study, everything. There is no way out! There is no way out! (Jenifer)

The International Association for the Study of Pain (2019) estimates that 20 per cent of humans, worldwide, experience such chronic pain. Suffering that persists after physical damage has healed or suffering that exists without apparent physical cause (Butler & Moseley, 2003):
…the tests keep on coming back and…this shows that there's nothing…you haven't got this, and you haven't got that…it becomes frustrating…it made me feel like a hypochondriac…there is a sense of, nobody believes it is actually there…[clinicans] haven't got a diagnosis…[clinicians] don't know how to treat it. (Eunice)

Once the bio-medical model is sunk, pain-bearers are often asked to grab hold onto psychology and to find rescue in pain acceptance.

Within chronic pain services, acceptance-based therapies are popular. The 'acceptance of chronic pain' is now a clinically relevant intervention, seen as empowering to the client – to live better with and beyond their persistent suffering, towards a life directed by values (Hayes et al., 1999), rather than a life controlled by pain. A lot of research is focused on generating evidence, often showing that higher levels of chronic pain acceptance show lower levels of chronic pain related mental and physical disability (McCracken et al., 2005; Wicksell et al., 2008).

In short, once pain-bearers reach the point of acceptance, they seem to live better with their chronic pain.
…well, I don't know about that…(Garen)

Whilst we understand Garen's scepticism, non-acceptance of chronic pain is, today, understood as a barrier to living well with pain (Cederberg et al., 2016) and a barrier to treatment. Hence chronic pain acceptance is offered to the pain-bearer as the required 'bold step toward a valued life' by pain-practitioners (Dahl & Lundgren, 2006, p.108). NHS pain services conceptualise pain-acceptance as the pain-bearer's willingness to let go of pain control and to experience pain in the pursuit of an active and value-driven life-style (McCracken, 1998). However:
…is this what acceptance means for you [the researcher] maybe? That [chronic pain] kind of stops me getting where I want to go. If I just accepted it, where I thought I could never feel any better, to be honest, I think I would want to die because I just wouldn't want to live like this…(Dorothy)

Garen and Dorothy raise the question of whether the 'helpfulness of' acceptance is a meaning given and used by those who treat and research it, rather than by those who are tasked to 'accept' it.

So what – and what now?

Of course, psychology does not seek to be arbitrary, and we pride ourselves on evidence-based working. The aforementioned definition of chronic pain acceptance rests upon a great deal of quantitative research (McCracken, 1999; McCracken & Eccleston, 2005, 2006; Vowles et al., 2008).

Yet, we know that the nomothetic approach faces many challenges, including but not limited to dropout rate. In fact, chronic pain acceptance publications often report attrition rates of between 25 per cent and 50 per cent (Johnston et al., 2010; Veehof et al., 2011; Wetherell et al., 2011; McCracken et al., 2013).

Curious. Might we, the clinical and research community, not yet have captured the perspective on 'acceptance' of those who voted with their feet?

From a counselling psychologist's position, this is problematic as it points towards a lack of inclusiveness of the theory and its therapeutic transforms. From a researcher's position, it might be problematic as we could get stuck only researching a distinct dimension of chronic pain acceptance. From a clinician's position, this can be problematic as we might use a theoretical construct of acceptance which is invalid for the client, albeit well-defined and well-researched. All of the above could nurture dropout rates:

…I did feel when I came…even on the assessment day it felt a bit patronising… there was an element of "that's stupid", we don't have to be spoken down to… (Eunice)

Researchers and clinicians must understand how acceptance is experienced by those who complete acceptance-based interventions and by those who don't.

Talking to those who are not here

In a London NHS-based pain management service, I interviewed ten people who did not conclude their acceptance-based pain management program. The interview data were analysed using van Manen's hermeneutic phenomenological thematic analysis (2016). This methodology captures the ideographic phenomenon, here chronic pain acceptance. It then introduces convergences and divergences of the participants' lived experience. It is mindful of the context in which chronic pain acceptance occurs and transparently shows the researcher's data interpretation. Lastly it enables readers to have their own lived experience of the phenomenon under investigation.

The discoveries were surprising.

Acceptance: you don't have a choice

This research highlighted that the words 'acceptance' and 'accepting' are used interchangeably in pain management. Moran (2018), however, points out that although we can describe our life with nouns, we must be aware that we are living it using verbs. In other words, clinicians must be aware that the psychological processes of change (accepting) are often presented to clients as static entities (acceptance), to clients and patients. Whilst jumbling up word classes might not be problematic in our day-to-day conversations, it makes a big difference in the clinical context. As the study's participants pointed out: it changes the conveyed meaning.

For example, participants did not experience acceptance of chronic pain as a choice. Nor as a hierarchical construct with radical acceptance as its highest and most valuable form. Acceptance was neither beneficent nor beneficial. Participants experienced acceptance as their acknowledgement of pain's existence. Allow me to repeat this: acceptance is the acknowledgement that the pain exists in one's life. Acceptance is a construct divorced from any indication of how the person is relating to, and dealing and living with, chronic pain.

Accepting: many ways of relating

Accepting walks hand in hand with acceptance, and yet is radically different. Acceptance is the acknowledgement of an experience's existence. Accepting is how we are with this experience and was experienced as nurturing and depleting by the participants. To understand whether it is helping or hindering clinicians need to analyse the relationship between the pain-bearer and the chronic pain. Knowing that this relationship is also actively moderated by significant others such as families, friends, working-environment and health-care providers (not analysed here).

Let us analyse the bi-directional relationship between the pain-bearer and the chronic pain. Firstly, through the eyes of the pain, then from the stance of the research participants.

Chronic pain imposes itself onto the pain-bearer's life. It becomes an unpredictable and oppressive entity. It exists independent of the pain-bearer's stance towards it. Pain invades and gradually pushes others out of the person's life:

I used to run for like 40 minutes… I stopped that one…used to go and play football… then I stopped that one… I used to work full time, I stopped that one … I lost a lot of people… so many people… (Anders)

With other words, chronic pain can become the most prevalent and consistent entity in a person's life.

Whilst the pain appears to relate to a person by overtaking their life, the pain-bearers experienced different ways of relating to the persistent pain. To be precise, the analysis showed three ways of accepting the chronic pain: resignating, automatic counteracting and behavioural adapting. The following introduces the characteristics of these ways of accepting.

Accepting chronic pain with resignation. This means that the pain and its impact are experienced as one inseparable, penetrating and life-shattering entity. Life-agency passes over to the pain for fear of being hurt even more. People are resigned to the fact that they should or must bear the pain, and eventually they become…

…very, very tired, I used to get this, like, a giving-up sensation: I don't know what it would feel like, I don't know how to explain it, but I just thought "Oh, I'll give up, oh sod it," you know… (Chuck)

Accepting chronic pain with automatic counteracting. This is where the pain-bearer is on a reactive and automatic quest to find pain-eradication. The pain and its impact are the enemy, which are to be defeated. So that the pain does:
…not get to you! Don't let it beat you! Don't let life beat you…don't end up whining and crying about how you feel… (Garen)

Accepting chronic pain with behavioural adapting. Behavioural adaptation describes our ability to change or transform our actions and behaviours accordingly to a given environment. We can imagine this also as a behavioural process, unique to the individual, where we develop: '…different patterns, different habits…different identity…' (Sacks, 2012, p.xiii). This active responsiveness, this consistent development to adjust to the different demands of the persistent and perhaps ever-changing pain is not targeted toward pain-eradication nor towards succumbing. It is a lived responsive and relational style in which the pain-bearer is intimately familiar with how to sooth the pain's impact. Over time, chronic pain is detached from the effect it has on the person's life. This enables the pain-bearer to take back their life-agency. And to regain (some) control over the pain's impact.

…the pain has been there for over 20 years… you would be silly not to know… what makes it worse…what makes it better… you realise eventually that you can actually do maybe all the things you want to do…like going to the gym… I can manage the swimming better, it doesn't have that impact and…it's a way of trying to make my body stronger…caring for my body and looking after it will reduce the pain too. (Eunice).

What I have learned, and what you might want to think about

I, the scientist-practitioner and cancer survivor, have learned that acceptance and accepting shows an 'essence of human existence… to find ourselves in between freedom from and submission to our world' (Wrathall, 2005, p.32), and that living requires actively and persistently working with this paradox.

We, the clinicians and researchers, might want to think about whether we are pushing a theoretical framework onto those seeking help when using 'accepting chronic pain' and 'chronic pain acceptance' interchangeably – proclaiming both to be intrinsically beneficial. Such behaviour could not only make it harder to find a common, supportive and therapeutic language with pain-bearers but could endorse methods of accepting that are unhelpful, even endangering pain-bearers' wellbeing. After all, clients whose accepting resembles resignation or automatic counteracting could become more depleted. We, both researchers and research users, need to focus on the ideographic understanding of the phenomenon as well.

What starts to transpire is that the character of the pain-relationship appears to play an important role in understanding accepting as a supportive process. I feel driven to further this research with pluralistic investigations, and am inviting researchers across the ontological spectrum and people who suffer persistently with pain to take part in deciphering acceptance and accepting further.

- Dr Ute Liersch is an HCPC accredited Practitioner Psychologist and Founder of TheResilientMind.com
[email protected]

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