Making sense of symptoms
Healthcare Counselling and Psychotherapy Journal, January 2023

I am a clinical psychologist and I have worked in neurological settings in the NHS for many years. I started in the community, in a dementia service for older adults and carers. I then went to the neuropsychology department at the National Hospital for Neurology and Neurosurgery, as the lead psychologist for the neuro-oncology service and then as head of the mood pathway for patients with multiple sclerosis.

I have recently trained as a practitioner of cognitive analytic therapy (CAT) – and I strongly believe that it can help patients with the complex adjustment to the neurological conditions of multiple sclerosis and low-grade brain tumour, conditions that present significant loss and uncertainty. In my view, an understanding and formulation within a CAT framework can enable patients to find ways of coping with the challenge of making sense of their diagnosis and symptoms.

The CAT model has been implemented in my work at the hospital in a pragmatic way. Some patients receive weekly, individual CAT sessions for 16 weeks; others might have briefer CAT sessions, or CAT concepts and tools are used during six-monthly review sessions.

The purpose of the CAT intervention is to help empower the patient to find a way to live with the uncertainty of their condition, in a collaborative, non-medicalised framework. In my experience, it can help patients to ‘come to terms’ with a diagnosis and/or resulting symptoms, enabling them to live as fully as they can, despite the limitations of their illness.

Low-grade brain tumour is not defined as cancer. The condition can therefore be dismissed or minimised. But a low-grade brain tumour will often progress to cancer, so a patient might eventually need surgery, medication, radiotherapy and chemotherapy, which can result in significant disability and shortened lifespan.

Multiple sclerosis is a condition first described by Charcot as one where ‘...grief vexation and adverse changes in social circumstance were related to the onset’.¹ The disease has a chronic and uncertain course, with intermittent symptoms and accumulation of disability.² Both conditions typically result in changes to work, family life and relationships, with increased dependence on others and the expectation that symptoms will get worse at some point.

What is cognitive analytic therapy?

CAT is a time-limited, structured, integrative model of psychotherapy, developed by Dr Anthony Ryle,^3,4 in response to the needs of his NHS patients. It is relational and collaborative, acknowledging that the relationship between therapist and patient is a crucial factor in therapy.

CAT integrates cognitive psychology, psychoanalytic concepts and the work of Vygotsky⁵ and Bakhtin⁶ on the social formation of mind and dialogism. It also uses the concept of ‘reciprocal roles’ and ‘role procedures’, which originates from object relations theory and the idea that our early relationships with caregivers become the template for later relationships in life. These early relational patterns, once adaptive and functional, can, over time, become maladaptive, problematic and unconscious. CAT therefore focuses on helping people recognise relational patterns that might prevent them from achieving their goals in life.

Traps, dilemmas and snags

CAT practitioners talk of three types of target problem procedures – traps, dilemmas and snags. Traps are described as ‘...patterns of thinking and behaviour that inadvertently keep a person stuck in a vicious circle’;⁷ dilemmas are thought of as false dichotomous choices between polarised alternatives. Lastly, snags represent goals that are abandoned or sabotaged for fear of how we assume others will respond. Traps, dilemmas and snags are usually mapped out with a patient in the session in a sequential diagrammatic reformulation (see Figures 1 and 2). Recognition and revision of these role procedures can lead to change.

The other tools used in CAT are the psychotherapy file, reformulation letters and goodbye letters. The psychotherapy file is a questionnaire completed by the patient to help identify their target problem procedures. A reformulation letter is written by the therapist, following an initial assessment period in the therapy. It is read to the patient and outlines an understanding of the patient’s story and role procedures. The reformulation letter can help in building rapport and focusing on goals and aims for the rest of the therapy sessions. 

Both therapist and patient write their own goodbye letters, which are read out at the end of therapy. The goodbye letters help to review the therapy and reflect on the ending. The process of acknowledging endings can be fraught in the context of conditions such as brain tumour, where sudden change can signal the possibility of death. Ryle^3,4 explains how the goodbye letter keeps the therapist and therapy active in the patient’s mind, through follow-up and beyond. Hamill⁸ hypothesises that goodbye letters help patients cope with termination.

Reactions to symptoms and illness are often related to early formative experiences.⁹ Pitchealy¹⁰ talks of the ‘re-emergence of patterns’ and ‘reactivation of memories’. A diagnosis can therefore reignite experiences of abuse and trauma, as well as interrupt ‘...established patterns of coping that have helped the person manage so far in their lives’.¹¹ Thoughts, feelings and behaviours, such as fear, withdrawal or avoidance, retriggered from early experience, can also impact on relationships with family, friends and health professionals. Studies in both multiple sclerosis and brain tumour have shown that increased distress can worsen the experience of symptoms and reduce quality of life.^12,13

CAT has been used successfully with chronic pain,¹⁴ diabetes management,¹⁵ brain injury¹⁶ and cancer. Prigitano¹⁷ highlighted the potential of psychotherapy within neurological settings and the need to attend to the ‘...patient’s style of interpersonal action’, in the context of their engagement with medical treatment. In my view, this strengthens the argument that CAT intervention and a relational formulation in conceptualising the impact of multiple sclerosis and brain tumour could be beneficial to patients.

Patients presenting or diagnosed with a brain tumour and multiple sclerosis are often referred for psychological support and, despite medical reviews and intervention, this particular group of patients is often described as experiencing low mood and anxiety. The nature of their diagnosis and symptoms means they struggle to find a way to live with their illness and face overwhelming distress.

Patients understand their illness and can rationalise how symptoms, such as seizures or neurological fatigue, can be managed. However, it is often the patient’s early relational patterns, triggered as a result of the illness, that cause additional distress and leave them feeling out of control. The experience of chronic illness and the greater vulnerability and dependency on others can suddenly confront the patient with issues that have been underneath the surface of their busy, independent, adult lives. I would like to illustrate the use of CAT in this context, with reference to the following case examples.

Jennifer

Jennifer was a patient with a low-grade brain tumour. She was referred following surgery, due to anxiety and avoidance as a result of seizure symptoms. Jennifer came to therapy feeling stressed and anxious. She wanted to be positive but had become more isolated from friends and colleagues, choosing to stay away from ‘negative things’. The intensity of her emotions and the pressure to cope were evident. Jennifer would say: ‘I should be happy’ and ‘I should be dealing with this’. It was challenging for her to name her feelings and connect with her vulnerability. However, she was open to working within the CAT model to find ways to better manage her distress.

Jennifer had witnessed physical abuse in childhood. She talked of ‘walking on eggshells’ and having to ‘put up a front’, as the abuse she witnessed at home was kept hidden from her community. Through mapping together, we identified a reciprocal role of neglecting/pressurising to neglected/pressurised, meaning she did not have space to make sense of her emotions and ‘had to be strong’. We explored how, as a child, she felt it necessary to hide her feelings and her vulnerability, in order to keep herself safe. In recovery from major brain surgery, the role presented problems, as she did not give herself permission to feel sad or upset, instead withdrawing and isolating herself when she found it harder to cope. She would often panic and ring the nurse repeatedly for reassurance, as she was hypervigilant to any symptoms and did not have the resources to self soothe (see Figure 1).

In sessions, the reciprocal role of neglecting/pressurising to neglected/pressurised could be played out in the intensity of her emotions. Outside of sessions, it led to either fighting or cutting off. The constant conflict caused her to feel isolated and exhausted. However, through formulation in the CAT model, she began to stay with these emotions in sessions.

Mapping out her role procedures enabled Jennifer to understand these patterns, so she was less self-critical and could bear the distress of uncertainty and lack of control, thereby enabling her to get support from others. She gained confidence in her ability to feel what she needed to feel, as she continued to live with the unpredictability of a tumour that might re-occur and progress at some point in the future. She questioned: ‘What’s the point in reacting, overthinking and falling out with people?’

In Jennifer’s goodbye letter, she acknowledged that she was still getting to know herself and felt scared at times. But she also noted that others around her had noticed a positive change and been better able to support her. As she built trust in sessions, she took on board the idea of ‘digesting’ her emotions, rather than seeking a fix. She was also able to consider two-way relationships and the impact of her behaviour on others, instead of seeing everything as ‘black or white’.

Figure 1

Michelle

Michelle was recently diagnosed with relapsing, remitting multiple sclerosis. She arrived at the sessions saying she felt broken and inadequate, unsure how to cope with the symptoms and diagnosis, in the context of significant losses in childhood and difficulties in her relationships. She was enthusiastic about the CAT model and did some reading prior to our first session, eager to make the best use of therapy and find ways to adjust and cope with the uncertainty of her illness.

Through the psychotherapy file and the map (Figure 2), we identified a reciprocal role of judging to judged. It appeared that, in an effort not to be judged or abandoned, she did her best to please others, seeking validation. When she felt judged, she responded by striving ‘to do’, which had been increasingly hard to sustain with her symptoms. She further strived to ‘be the best’, in response to the inadequacy she experienced as a result of her illness. She often felt overwhelmed and that she had failed. In these moments, childhood fears of abandonment were activated, leading to what she termed ‘a downward spiral’. Michelle would then enter a numb state or fight to seek validation, escalating conflict. Both led to rejection, judgment and abandonment.

The collaborative nature of the CAT model of therapy ensured that issues of power and gender were overtly addressed. The reformulation letter also reinforced the importance of feeling heard and having a voice, which she did not have as a child. The map was a useful reminder in sessions of how she would strive to please me; her striving could be identified in the moment, named and understood without judgment, thereby enabling feelings of sadness and anger to emerge.

Michelle was creative, using artistic representations of her numb state and ‘the dragon’ that was awoken when she fought to seek validation. The process of naming and personifying these states helped her gain awareness of the impact of her behaviour and emotions on others. It also enabled her to connect more with her illness, which she had previously cut off from, for fear of becoming overwhelmed.

By connecting with her emotions in sessions, Michelle was better able to grieve. She could empathise with close relatives, when previously she would have ‘fought’ with her family. Michelle became more confident in her ability to cope, asking for support and affection in a way that didn’t push others away. She also no longer strived to be ‘the good patient’; instead, she recognised that she was able to express difficult emotions to others, without necessarily being abandoned. She was also able to find out more about her illness, so that any symptoms would not immediately trigger the ‘downward spiral’. CAT enabled her to have a voice and connect more with her identity, some of which she incorporated into her diagnosis of multiple sclerosis.

Figure 2

In my opinion, CAT can help a patient to make sense of themself and their illness. The experience of chronic illness confronted Michelle and Jennifer with relational challenges that were evident prior to their illness. For Jennifer, the distress due to the uncertainty of the brain tumour was exacerbated by the relational dilemma experienced in childhood of ‘…either I bottle up my feelings and cut off, or I explode’.

Michelle’s tendency to strive in response to feelings of inadequacy led to the snag of ‘…taking on too much and becoming overwhelmed’, negatively impacting her symptoms and emotions.

The experience of being helped is one which, to varying degrees, can feel controlling, judging or criticising, depending on early experience. For Michelle, the trap of trying to please and ‘be the good patient’ was evident in sessions, often at the expense of connecting with her own, difficult emotions. Within the CAT model, this could be named and addressed through tools such as the psychotherapy file and the map.

Response of patients

So how do patients react to their experience being discussed in a CAT model Vygotsky⁵ provides a framework and tools with which to work within the patient’s ‘zone of proximal development’ (ZPD), particularly in the context of different levels of disability, medical treatments and acute symptoms, as well as cognitive difficulties that can affect engagement. Attending to the patient’s ZPD, which involves judging how to pace and develop goals for therapy, bearing in mind the patient’s own capacity to help themself and their need for support from the therapist, is crucial with patients who come to therapy in an acute medical setting, sometimes in the context of a cognitive assessment, who might think of their distress as part of their condition.

Both Jennifer and Michelle were receptive to CAT, particularly the idea of relational patterns arising out of early experience, which can exacerbate psychological distress when confronted with disability, shortened lifespan and increased dependency. Jennifer mentioned ‘…going back to my young self and the way I deal with things’, as something she identified as helpful in the therapy.

In a follow-up session, Michelle talked of the importance of the goodbye letter, as it helped her to stay connected with her experience of therapy. Writing her own goodbye letter also enabled her to have a voice, thereby providing a framework to express her needs.

A CAT framework can allow patients to reflect and cope with the changeability and unpredictability of their illness. But conditions such as brain tumour and multiple sclerosis can also impact the patient’s engagement in therapy. A multiple sclerosis patient who experiences a symptom relapse might be unable to attend sessions. A brain tumour patient whose condition progresses might suddenly find themself coping with surgery, treatment and potentially terminal cancer. A patient might attend a different hospital, follow a different treatment pathway or even need hospice care, so the possibility of unexpected endings is always present. 

Limitations and challenges

Patients with brain tumour and multiple sclerosis are vulnerable, so we must carefully explore whether change would be helpful. Prigitano¹⁸ rightfully advises caution, as psychotherapy might not always be indicated with patients in neurological settings. Also, symptom deterioration, such as cognitive decline or behavioural and personality change, might mean that a patient is no longer able to manage the demands of individual therapy. Practical support and care are then the best ways to contain distress and minimise risk.

It is my belief that the tools of CAT have much to offer, particularly in complex care, as a patient’s condition could worsen without therapeutic intervention. For example, depression can lead to withdrawal and disengagement from medical treatment to prevent seizures or manage neurological fatigue, so affecting the patient’s quality of life.

The use of CAT in complex adjustment with patients with brain tumour and multiple sclerosis requires flexibility. Calvert¹⁶ talks of the difficulty of incorporating all elements of the CAT model and suggests instead that the therapist adapt to fit the needs of the patient. But an ability to reflect on the self and the process of relating to others can enable many patients to express their emotions in a way that allows them to get support and feel heard. Previously, they might have withdrawn, cut off or felt judged and criticised.

I have been struck by the remarkable resilience of patients in the face of such adversity. The challenges of the tumour or the multiple sclerosis, although very much part of their lives, do not dominate, and they can find at least some comfort and relief. The mapping of reciprocal role procedures and exploration of their origins can unlock a sense of stuckness and ensure that the ‘limitations’ of the illness are not further compounded by traps, snags and dilemmas.