Learning to live with a long-term health condition is life changing. It involves managing both the condition and all the change and uncertainty that goes with it, while also trying to live a full and valued life. In this post I explore how those twin tasks each have elements of acceptance and change.

Adjustment to a long-term condition

Learning to live with a long-term health condition (LTC) is a process of adjustment to what is likely to be an unwelcome and distressing experience. Adjustment involves both how we make sense of what’s happening, and what we do to cope. It has been defined in terms of two types of tasks: illness tasks and general tasks. Illness tasks include i) dealing with symptoms, treatment, and potential disability, and ii) maintaining relationships with health care staff. General tasks focus on i) preserving a reasonable emotional balance, self-image, and sense of competence, ii) sustaining social relationships, and iii) preparing for an uncertain future (Moos & Schaefer, 1984).

Rona Moss-Morris’s (2013) unified theory of adjustment describes it as a process that involves interactions between personal background factors (such as our personality, values, and age), illness specific factors (such as the nature of the symptoms and the prognosis) and background social environmental factors (such as our level of social support, availability of health care, and relationship status). These background factors affect how critical events (such as getting a diagnosis) and ongoing stresses associated with the illness (such as uncertainty about the course and outcome of a condition) can, not surprisingly, disrupt a patient’s emotional equilibrium and quality of life.

Successful physical, psychological, and social adjustment leads to a return to emotional equilibrium and a good quality of life, while adjustment difficulties lead to a continued loss of equilibrium. Adjustment to a long-term condition is not just a matter for the “patient”; it also affects loved ones. Berg and Upchurch (2007) write that,

“The diagnosis of a serious chronic illness begins a period of significant distress and adjustment for both patients and their spouses. Couples must begin to make difficult treatment decisions, redistribute household responsibilities, and adjust to the threat of a potentially life-threatening and long-term illness” (p 920).

Learning to manage a long-term condition

When a person receives psychological help to learn to manage a long-term condition, treatment often uses self-management interventions based on cognitive behavioural therapy (CBT). Karelka et al. (2019) state that modern, CBT-based self-management interventions can be effective in helping manage both the symptoms and psychological demands of illness. However, they have some limitations, not least that the effects can sometimes be small and short-term, and interventions are not necessarily guided by modern theories about adaptation to chronic health conditions. Karelka et al. suggest that Acceptance and Commitment Therapy (ACT) is a promising add-on psychological approach. They state that ACT is well suited to incorporating into psychological interventions what is known as the Common Sense Model of Self-Regulation (CSM: Leventhal et al., 2016.

The CSM describes the onset of a long-term condition in terms of perceived threat: to health, wellbeing, quality of life, even one’s life itself. The CSM focuses on how patients create mental representations of i) the illness, ii) their coping procedures, and iii) their treatment options. What we think about what it means to have the illness, what changes we will need to make to cope with it (if any), and how we feel about what treatment will involve, guides our short- and long-term action plans. Throughout this process of adjustment to a new reality, patients are having to learn how to manage both their symptoms and distressing negative emotions while taking stock of feedback on how effective their strategies are in managing the threat to health.

Living a valued life

If CBT traditionally focuses on learning to challenge and change unhelpful beliefs, assumptions, and health behaviours, ACT focuses on accepting all experience, mindful awareness of emotionally charged thinking (called cognitive defusion), and willingness to engage in activities that promote a valued life. Because there are often limits to what can be achieved by self-management, an approach focused on acceptance can be helpful. Because some aspects of a condition can be managed more or less effectively, a focus on change is also important. In an ideal world these two approaches would be complementary.

Whittemore and Dixon (2008) explored in their research how people with a chronic illness integrate their experience of ill health with their life. They point out that people with long-term conditions are expected to learn and practise self-management strategies to prevent complications and maintain functioning. However, people also need to balance self-management with living a meaningful life that does not simply focus on their condition. The authors concluded that there is a complex coexistence between “living an illness” and “living a life”.

As Moss-Morris’s unified model makes clear, this complex coexistence has to consider interacting factors related to i) the condition, ii) the person and their life stage, and iii) the social and cultural context. For example, the management of a long-term condition unfolds over time with different tasks appropriate to each phase. Understanding a condition and its management includes identifying symptoms and interpreting their meaning using testing and diagnosis, often leading to medical treatments and interventions, and usually ongoing medical and self-monitoring.

Berg and Upchurch (2007) point out that aspects of the condition that affect its management include the degree of control one has over symptoms, the onset and course of the condition (how it begins and the path it takes), daily management tasks, and its impact on a relationship. For example, some conditions can be well managed (e.g. Type 2 diabetes). Some have symptoms that show a gradual onset (e.g. rheumatoid arthritis) while others have an acute onset (e.g. myocardial infarction). Some health conditions inevitably deteriorate (e.g. Parkinson’s), while others are fairly constant (e.g. hypertension) and still others might relapse after going into remission (e.g. some cancers). Some will have clear symptoms related to the underlying pathology (e.g. asthma), while others involve multiple physiological systems and are much more variable or difficult to pin down (e.g. chronic fatigue). Some require high daily management (e.g. COPD), some cause cognitive impairments (e.g. Alzheimer’s), and some have a high impact on relationship and sexual functioning (e.g. prostate and breast cancer).

The impact and meaning of symptoms will also vary depending on a person’s life stage and responsibilities. Whether we are single, or in a relationship, are in work or not, have dependent children or are caring for older parents, live in secure housing and are financially independent or are struggling with the cost of living, will all affect what it means to become ill at this point in our life. Depending on a person’s life circumstances, they might have better or worse access to health care; for example, a person with private medical insurance in the UK is likely to receive treatment more promptly than someone who has to rely on an often-overstretched NHS. This complicated array of interacting factors adds to the challenge of developing new ways of thinking about oneself and one’s condition as well as making needed changes to health behaviour and ways of living.

The acceptance and change model of managing a long-term condition while living a valued life

The contextual model I describe below (Figure 1) is what is known as heuristic, that is, it is a short-hand way of representing some of the challenges a person with a long-term condition is likely to face. It also suggests the different types of strategies needed to meet those challenges, whether of acceptance or change. Consistent with existing models of adjustment, the model shows interacting factors. There are three main elements: i) a 2×2 matrix of acceptance versus change and managing a condition versus living a valued life, ii) the person of the “patient”, and iii) the lifeworld or sociocultural and relationship context of the person and their condition.

The horizontal (or x-axis) of the matrix describes attitudes of openness to acceptance and willingness to change. These attitudes relate to those elements of one’s life and of the condition that are either in one’s control or not in one’s control. Where aspects of life or a condition are not in one’s control, they require openness to acceptance of that reality. Where aspects of the condition and of life are in one’s control, they require a willingness to act and usually to make changes. The vertical (or y-axis) focuses on the behavioural distinctions of managing a condition (“living an illness”) versus living a valued life. This leaves us with four quadrants.

The 2×2 matrix

In the bottom left quadrant are those aspects of a condition that are likely to respond to self-management strategies. These include the symptoms of the illness that can be monitored and mitigated by positive healthcare behaviours. Active coping behaviour offers the possibility of exercising at least a degree of control over the course and outcome of the condition. This could be both time consuming and require considerable flexibility from the patient and other people in their life to adapt to the changing demands of a condition.

The bottom right quadrant acknowledges that not all symptoms, nor the course and outcome of the condition, will respond to self-management strategies. Rather than pursuing futile or even harmful attempts to change them, it might be more helpful to accept this reality. However, adjustment can be challenging as one starts to come to terms with the impact of symptoms on one’s physical functioning and self-image. For example, learning to live with chronic pain involves reshaping one’s expectations of the degree of control one has over the severity and duration of pain. Acceptance of a lack of control over aspects of one’s illness experience will need to draw on skills such as mindfulness and self-compassion. These skills can be learned and practised but will themselves require patience and diligence.

The top right quadrant describes an attitude of acceptance towards the changes that the condition will create in one’s life, social and personal functioning, roles, and relationships. These changes affect not just the person with the condition but also those closest to them. Grieving what has changed or been lost in one’s life when one has a long-term condition is also a necessary part of adjustment. This might include specific losses, such as the loss of one’s work role including its meaning and significance for one’s identity, or the loss of an imagined future, that is, the vision of what we imagined life was going to be like. Other people in the patient’s life will also face losses, not least the threat to the life and health of a person they love, and this too can be very challenging.

However, it is still possible to find meaning in life and to continue to live it as well as one can. This means pursuing meaningful and manageable goals within the scope of what is possible, in line with one’s values and desires. The top left quadrant therefore describes an attitude of willingness to embrace what life has to offer. That means focusing on continuing to do valued activities, even if in a new way, and to try new things, or new ways of doing old things. Whether it is in terms of work, non-medical self-care, home management, socialising, personal interests, family, or one’s intimate partner relationship, adjustment also means learning to focus on and find meaning and pleasure in ways of living that are personally significant.

For example, it can be difficult to learn to adjust to the impact of a long-term condition on sexual intimacy, an aspect of living with a long-term condition that some people find difficult to speak about to health care workers (and vice versa). However, McInnes (2003) points out that “for patients with chronic illness and their partners, a satisfying sex life is one way of feeling “normal” when so much else about their lives has changed” (p. 263). Both the symptoms of the condition (e.g. pain and reduced mobility) and its treatment (e.g. the effects of surgery or medication) can affect body image and the ability to engage in formerly pleasurable sexual activities. It might be tempting to give up on intimacy, but it also might be possible to reinvent what a sexually satisfying encounter could look like under these new circumstances. Perhaps one might even start to redefine what intimacy means and can involve. A willingness to communicate openly and honestly about the meaning and pleasure of intimacy, or any other area of personal or relationship functioning, is crucial to adaptation. However, that is not a panacea for the genuine sense of loss and distress that chronic health conditions can elicit, which is why acceptance and change need to sit alongside each other as equally important parts of adjustment.

The person and their lifeworld

The element in the centre of the model refers to the person’s physical and psychological state that constitutes their vulnerability and resilience. This includes one’s mental health, and the unique importance we all place on valued activities, roles, and relationships. As we have seen, illness representations, that is, the way we think about the condition, its treatment, and their implications, affect how we cope. Those beliefs are intimately linked to the person we are and our history of illness and of care and will affect how well resourced we feel to deal with our current situation. The better we can live a meaningful life despite a long-term condition, the more resourced we are likely to feel. The more resourced we feel, the more likely we are to choose ways of coping that help us come to terms with and manage the practical and emotional impact of chronic illness, and to persist with our coping strategies.

Not only is each person an individual, but we also each live in a unique social and relational context. Our “lifeworld” includes the stresses and supports, and the threats and opportunities presented by both the condition and the social and interpersonal resources we have to deal with it. Stresses and supports also relate to our life stage, our expectations of ourselves, and our responsibilities to others, as well as the stability and security of our living arrangements and financial resources. Threats might include the way that a lack of resources has an impact on accessing the care we need, while opportunities might include the way that the condition somewhat paradoxically can help us take stock of what is most important to us.

A personal audit

In conclusion, this model might be helpful to structure an audit of the tasks of adjustment and the resources one has to meet it. The following questions might be helpful:

1. What aspects of my condition will respond to self-management strategies and how can I best implement those strategies?
2. What aspects of my condition are unlikely to respond to self-management strategies, and how best can I cultivate a compassionate, mindful, accepting stance?
3. What valued aspects of my life might no longer be possible (at least for now), and how can I best manage the process of letting go of both pleasurable and meaningful activities?
4. What valued aspects of my life can be preserved, enhanced, or reinvented, and how will I best manage that?
5. What strengths and capabilities do I have, and how can I best make use of them?
6. What weaknesses or vulnerabilities might compromise my adjustment, and how can I best compensate for them?
7. Who or what are the most helpful resources in my life and how can I best make use of them?
8. What threats, deficits, and stresses are present in my life, and how can I best work with them?

This post is in no way meant to replace the input of suitably qualified and experienced health professionals to help manage the challenging task of adjusting to a long-term condition. However, I hope that this way of breaking down the tasks of adjustment in terms of acceptance and change has been of some value.

With thanks to Dr Hayley Keeble and to Tom Farman for their comments on an earlier draft.

References

Berg, C. A., & Upchurch, R. (2007). A developmental-contextual model of couples coping with chronic illness across the adult life span. Psychological Bulletin, 133(6), 920-954.

Karekla, M., Karademas, E. C., & Gloster, A. T. (2019). The common sense model of self-regulation and acceptance and commitment therapy: Integrating strategies to guide interventions for chronic illness. Health Psychology Review, 13(4), 490-503.

Leventhal, H., Phillips, L. A., & Burns, E. (2016). The Common-Sense Model of Self-Regulation (CSM): a dynamic framework for understanding illness self-management. Journal of Behavioral Medicine, 39(6), 935–946. https://doi.org/10.1007/s10865-016-9782-2

McInnes, R. A. (2003). Chronic illness and sexuality. Medical Journal of Australia, 179(5), 263-266.

Moos, R. H., & Schaefer, J. A. (1984). The crisis of physical illness: An overview and conceptual approach. In R. H. Moos (Ed.), Coping with physical illness 2: New perspectives (pp. 3–25). Plenum Medical.

Moss‐Morris, R. (2013). Adjusting to chronic illness: Time for a unified theory [Editorial]. British Journal of Health Psychology, 18(4), 681–686. https://doi.org/10.1111/bjhp.12072

Whittemore, R., & Dixon, J. (2008). Chronic illness: the process of integration. Journal of Clinical Nursing, 17(7b), 177-187.

Andrew Grimmer

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