I am ‘medically unexplained’. I have chronic pain and doctors have been unable to provide a pathological explanation for why it hurts and spasms, even though they can see inside my back by way of ‘sexy’ imaging (my husband’s term). Because there is no evidence of a bulging disc or some other physical cause, I am given a ‘diagnosis’ of ‘medically unexplained symptoms’ (MUS, or sometimes MUES). And I am not alone. Many people have very painful long-term health conditions (LTHCs), such as fibromyalgia, chronic fatigue and irritable bowel syndrome, which also all go into the MUS cookpot, along with medically unexplained chronic pain.
MUS featured in the DSM-IV-TR,1 as a ‘somatoform disorder’, so I (technically) had a psychiatric diagnosis for my chronic pain. Whoop, whoop! In DSM-52 somatoform disorders have become ‘somatic symptom disorders’, defined as ‘characterized by somatic symptoms that are either very distressing or result in significant disruption of functioning, as well as excessive and disproportionate thoughts, feelings and behaviors regarding those symptoms’.2 For the record, as a person-centred counsellor, I consider such labels and diagnoses to be red herrings.
All pain is real, and pain is whatever the patient says it is – to borrow a mantra from my former nursing profession. In 1965 the gate control theory of pain,3 for the first time, acknowledged the importance of physiological, social, behavioural and psychological influences and demonstrated the role of emotions in pain amplification and meaning. Memory and neural networks in the brain have also been shown to maintain pain,4 and we now know that the limbic system in the brain, when exposed to stress and pain experiences, sensitises the nervous system to be pre-disposed towards pain.5
Pain is ‘an unpleasant sensory or emotional experience associated with actual or potential tissue damage or described in terms of such damage’,6 which suggests that tissue damage is neither necessary nor sufficient for pain to exist. Acute pain is useful; it alerts us to potential or actual tissue damage so we can stop whatever it is we are doing, limit further damage and begin recovery. Usually pain abates with healing (where healing is possible, of course). However, for some people pain persists beyond tissue healing; in nursing terminology, pain is deemed to have become chronic when it persists for three months or more.
Chronic pain has no useful qualities; it causes considerable emotional distress and impairs social and occupational functioning. Its cause is largely irrelevant – in my own experience as a nurse (specialising in pain management) and as a counsellor, people with chronic pain, with or without a pathological diagnosis, share similar physiology, thoughts, feelings and behaviours. (What a diagnosis might mean to the individual is outside the scope of this article.)
Although the medical professions and the public may be more sympathetic these days towards the concept of a mind/body connection, the Descartian split persists, largely unchallenged, in the medical model of healthcare. But human beings are not compartmentalised like this. Illness, disease and injury are not solely physical, behavioural, emotional or psychological. Like eddies, they may appear to be distinct from the rest of the stream but they are indissolubly part of the whole. In health (and non-health), we are the sum of all our parts.
Chronic pain and recovery
Using both my former nursing head and my current counsellor head, I have reflected on how I have changed since I became ‘medically unexplained’, and why. I wanted to better understand why I ‘recovered’ (another label) when others have not and, indeed, may become more disabled.
Note, ‘recovery’ does not necessarily denote freedom from pain; for me it describes the ability to live life fully with pain (not despite it).
How we see ourselves is as much about our body (posture, movements, habits etc) as it is about our perceptions of our psychological traits, characteristics etc. If our body is no longer able to do what it used/we expect it to be able to do, then these losses lead to grief (we grieve for who we once were/what we were able to do) and affect our sense of self. Of the 14 million people with chronic pain in England, one in four (3.5 million) say that it regularly and frequently stops them doing usual activities (family, social and professional).7
I was unable to peel vegetables, use a toaster or change gear when driving; I was irritable, tearful and unable to hug my son; I couldn’t work. Overnight my identity as a wife, mother and nurse was ripped away, leaving nothing except the pain. Chronic pain removes choices around what we want to do/be; it makes it hard to plan ahead, because of the unpredictability of ‘good days’ and ‘bad days’. Chronic pain directly assaults your concept of who you are,8 removing or limiting self-determination and autonomy by putting a stranglehold on what you are able to do in life.
Higgins’ self-discrepancy theory (SDT)9 suggests that the self is constructed from three self-aspects: the actual-self, the ideal-self and the ought-self. Discrepancies between the three self-aspects may motivate you to seek to ‘close the gap’. Individuals with frequent, repeated or continued experiences of pain find their identity becomes enmeshed with the pain, leading to negative thinking, depression and anxiety.9 Pain has also been shown to very quickly penetrate a person’s sense of self.10 This was certainly my experience: my world and self-concept was all about pain, and I developed depression, anxiety and panic attacks.
Since self-concept cannot be separated from the body, change in one’s self-concept, with or without chronic pain, has somatic, psychological, environmental, political, economic, genetic, cultural, spiritual and social implications. Recovery is facilitated by accepting a new concept of the self with chronic pain. Charmaz11 describes how living with impairment turns into acceptance, reuniting the body and self. I certainly experienced a sense of disconnection from my back, and would speak about it as it were a separate entity (‘My back won’t let me do…’). Today I feel that reintegration or reunion; my back is once more part of me.
A model of change
Based on my personal experience and observations in my professional work, I believe that the self-concept changes with the onset of chronic pain (and LTHCs) and continues to do so throughout the chronic pain/LTHC journey, and the person’s life. Recovery, as I have defined it above, depends on whether the person accepts or rejects their changed self. I’ll explain the process here, using two fictional, composite clients drawn from my own experiences and those of others with whom I’ve worked.
Saffron’s pre-pain self was strong, capable, independent, school assistant, wife, mother, sexually experimental and sexually active. Then she was involved in a car accident and diagnosed with ‘spinal problems’. Saffron’s early pain self-concept was damaged/broken, pain, school assistant, wife, mother, sexually limited. She attempted to carry on as she had before the accident (despite the pain) but was eventually unable to continue working (due to pain).
Saffron actively sought a surgical cure for her pain; she had many operations, without success, and her use of pain medication (including opiates) rapidly increased. Her husband left his job to become her carer, as she had difficulty walking and struggled to manage their three children. Saffron’s depression worsened and she experienced increasingly intrusive, catastrophising thoughts. Her self-concept changed to include disabled (she is a Blue Badge holder and uses a mobility scooter), useless, helpless, burden, (largely) sexually inactive, wife, mother, broken, unfixable. She was awaiting further spinal surgery when she finally agreed to her husband’s suggestion that she ‘talk to someone’.
Louise’s pre-pain self-concept included teacher, strong, independent, wife, mother, capable, sexually active, dancer. In the previous year, Louise and her husband had experienced marital difficulties and had moved house. She woke one day with back pain, which was later diagnosed as ‘medically unexplained’. She tried to carry on at home and at work, but quickly found it impossible, because of the pain (or anticipated pain). She gave up trying to do the household chores and left her job. Then her husband moved out. Her early pain self-concept was useless, burden, hopeless, helpless, lonely, and alone, with catastrophising thoughts and the belief that the pain would never change or go away. Despite medication, Pilates, physiotherapy and acupuncture (for the pain), Louise was unable to drive, use a knife and fork or even hug her child. Her self-concept was broken, useless, helpless, burden, dependent, non-productive, lonely, alone, never teach or work again, drowning in pain. She began to take antidepressants.
Her mobility became increasingly restricted, and Louise could see she was heading towards a wheelchair. She decided she didn’t want to go there. She began working with her pain, taking small steps towards performing household activities, and as she did so she noticed how her thoughts and emotions influenced her experience of the intensity of the pain, and vice versa. She began to use this awareness of the mind/body connection to guide what she did.
Her self-concept changed gradually; it now incorporated determined, trying, strong, trying to find balance, productive in small ways, hopeful. She found ways to address her loneliness. Through self-directed pacing of activities and graded exposure to exercise, she was able to move more, without an increase in pain. With her GP’s support, she began to withdraw from her pain medication and antidepressants. (With chronic pain, medication is of limited use in reducing/ameliorating the perception of pain.12) Her self-concept now included independent, strong, with pain and OK, wife, mother, and friend.
How I work with chronic pain
I divide the chronic pain and LTHC journey into three phases (see Figure 1). In the first phase we move from pre-pain/injury to injury/pain, and non-acceptance of the pain. We are looking for a cure for the pain and the pain controls us and our choices. It is a vicious cycle of fear, depression, anxiety, avoidance of activity that might cause pain, catastrophising and a revolving door of health professionals and/or alternative/complementary health practitioners in our attempts to ameliorate pain. Our self-concept is enmeshed in pain,9, 10 and, like Saffron, we can become ‘stuck’ in this cycle, which may lead to disability, due to fear-avoidance of activity and social isolation.
Louise too was ‘stuck’ in phase one, but she didn’t want to be this version of herself. To move into taking control of her pain, she began a process of accepting her pain and accepting a self-concept of living in/with pain (phase two). My experience suggests there is some oscillation between these two phases of non-acceptance and growing acceptance, which can continue for some time. It is possible too to get ‘stuck’ in this oscillation phase. If the journey continues, the oscillation becomes less pronounced and finally stops, leading to a sense of integrated mind-body wellbeing (phase three). We realise that a cure for the pain is unlikely and we start to work with the pain. We may drop back into phase two if we experience a pain flare-up or a change in our LTHC, but this is generally only temporary. Thus the self-concept changes through the experience of chronic pain or LTHC, but the changed self-concept may also be the catalyst and motivator for recovery and regained wellbeing.
Pain perception resides in the brain, so it follows that the brain is where treatment should be targeted. Cognitive behavioural therapy (CBT) has had only variable success in treating chronic pain, with high drop-out and relapse rates.13 Indeed, Craig suggests CBT does not sufficiently recognise the role of emotions in chronic pain.13 There is very little research into the effectiveness of the person-centred approach (PCA) with chronic pain, and a growing body of evidence for the helpfulness of mindfulness-based approaches.14
I believe we can harness the same neuroplasticity that entrenches maladaptive coping in response to pain (such as avoidance of movement) to improve our physical functioning and reduce pain (through graded exposure to exercise, for example). My own recovery began from a conscious decision to reject my pain-self (disabled) and embrace a pain-self (active), and (re)construct my behaviours, thoughts and the environment to bridge that gap between the undesired and desired self-concepts.9 I became more aware of my mind/body connection, and began to work with these insights, learning and testing out activities to see what I could do. With no knowledge of mindfulness or CBT, I intuitively (and compassionately) developed my own DIY versions, on my own, which I think was instrumental in my recovery.
I now offer my own model of pain management counselling, which blends the person-centred approach with mindfulness, self-compassion, neuroscience and CBT, and my nursing and personal knowledge of pain management. Since chronic pain is biopsychosocial, its management needs to include all those aspects. This was the approach I used with myself (intuitively and unknowingly), and that I now offer my clients. My biggest challenge with clients (and healthcare colleagues) is to educate them in and get them to accept the mind/body connection and the need to let go of ‘fixing’ through interventions.
So with Saffron, who is stuck in phase one, I might explore issues around (in no particular order):
- self (old me, current me and desired me)
- the meaning of pain (pain as punishment?)
- movement (talking around, and doing)
- pacing activities and setting baselines, and why and how
- primary suffering (the pain) and secondary suffering (the stuff we pile on top of the pain, such as thoughts, negative self-talk etc)
- sex (eg what are the most comfortable positions)
- education in the mind/body connection, chronic pain mechanisms as different to acute pain, the ‘virtual body’ and homunculus, pain/condition flare-ups and how to manage them, acceptance and resistance to pain/condition.
The list is not exhaustive. It is vital that Saffron is able to hear and feel that the counsellor believes her pain is real, because it is real. Ultimately the aim of my work is to help Saffron to accept her pain and gain insight and self-awareness about herself and her pain. Acceptance of the mind/body connection and its influence on pain is essential and empowering, as Saffron is then able to appreciate that she can directly influence her pain experiences. Experientially, she will be challenged by movement and activity (it was a source of terror for me). Education around boom and bust cycles, pacing and slowly building activity levels is essential. We are giving Saffron the tools to manage her own daily rhythm.
Through using her body and her growing self-awareness, she will come to understand that all pain is influenced by thoughts and feelings and behaviours, and will develop an acceptance of the pain, softening her resistance to it. (New) movements may increase her pain (she will be using muscles that haven’t been used for a while); this is expected with anyone taking up new activities (even if, in Saffron’s case, it is the washing up, rather than lifting weights in a gym). Mindful awareness may be helpful in this process. Throughout, it is essential that we never forget that it can be terrifying (and lonely) to be challenging yourself in all these ways – physically, emotionally, cognitively and behaviourally.
From the evidence I have gained through reflection and my own counselling practice, I believe that the self-concept, rather than the actualising tendency, is the prime motivator of change – both with chronic pain and counselling more generally. What informs my counselling work is, in Rogers’ words, my belief in ‘individuals [having] within themselves vast resources for self-understanding and for altering self-concept, basic attitudes, and self-directed behaviour’.15
For the counsellor, I believe that a sound knowledge of pain physiology (chronic and acute), and pain management theory and practice is essential. However, even without this knowledge, the counsellor can still help the client to explore their self-concept and losses and facilitate acceptance of their chronic pain, alongside introducing behavioural changes.
I believe that psychological approaches should be introduced much earlier in chronic pain management (rather than as a last resort when medical/surgical interventions fail). This would lessen the likelihood of pain chronicity and encourage the psychological flexibility necessary for the person to cope with and adapt to change. This model, based around the changing self-concept, may prompt other healthcare practitioners to suggest their clients with chronic pain and long-term health conditions seek psychological treatment earlier in the course of their journey.
Kim Patel is a person-centred and integrative general counsellor in private practice specialising in pain management. She is an accredited Breathworks Mindfulness teacher and is currently studying a doctorate at Chester University.
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