Monthly Archives: February 2021

Chronic illness affects up to a quarter of people in the United Kingdom (The King’s Fund, n.d.) and many of those illnesses are invisible, including such diseases as many cancers, heart disease, HIV, AIDs, diabetes, ME/CFS and fibromyalgia and mental illness (Bassler, 2009; Kundrat & Nussbaum, 2003; Link & Phelan, 2014). One may experience symptoms that significantly alter their daily life and chronic long-term illnesses produce a series of complex psychological issues that further impact living with the disease (Marks et al., 2018). The person may lose their identity or sense of self and future aspirations, they may become subject to stigmatisation either directly or as a result of unconscious bias which in turn can affect every aspect of their lives, including access to healthcare. Improving one’s self efficacy may be a solution to the psychological impacts one faces when diagnosed with a chronic illness but in order for any of these factors to be improved upon, there must be an equal effort via societal structures in healthcare, workplaces and educational facilities, in order to support the individual with their ongoing needs. This in turn can produce better overall health outcomes and better support the individual.

A new diagnosis or experiencing debilitating symptoms of a chronic illness can threaten an individual’s identity (Marks et al., 2018). A person has a number of identities, including their self-identify which refers to who the individual is, their place in the world, their likes, dislikes and the activities they enjoy (He et al., 2019). An individual’s identity is also made up of their future plans and aspirations, their biography and the illness may leave the individual feeling like they no longer have a future or a place in the world.

Social Identity Theory (SIT) states that as part of groups, one’s identity is linked to the groups they are part of and can be linked to their status within their communities, social groups, workplace, friends and family roles (Marks et al., 2018; Tajfel & Turner, 2019). According to SIT, group conformity is important, and the individual may no longer be able to conform to their current groups due to restrictions imposed by the illness. Social connection has a strong impact on longevity, showing the huge threat one faces in this instance (Haslam, 2018).

This loss of one’s self, social groups and family roles can conjure a concoction of emotions such as helplessness, resentment and denial (Pranka, 2018) and the individual has a decision to make in this scenario: attempt to continue or find a way to maintain their current identity along with the illness (Pranka, 2018) or revise their identity, engage in biographical work which will help them to forge a different path for the future (Querol , et al., 2020), and accept the illness as part of their identity which can result in health improvements or be health protective (Ortis et al., 2018).

Conversely, if a change in identity is not accepted by the individual, they may attempt to assert control over their identity and control the parts of themselves that others see, leading them to conceal the illness (Aujoulat et al., 2008). This in turn, may force the individual into social isolation and also may prevent them from accessing the healthcare and social support they need (Quinn et al., 2017). Having strong social bonds is health protective and if the individual is limiting themselves from that social help and support, further psychological issues may ensue, including anxiety and depression (Haslam et al., 2018).

Forming new social identities or joining new groups can encourage post traumatic growth and help the individual to work towards overcoming the psychological impact of the illness trauma (Kelly et al., 2012; Zeligman et al., 2018). However, symptoms may make it difficult to join new groups due to the constraints of their illness (Marks et al., 2018). Additionally, there are risks in exposing their illness and building a new identity around it. Many chronic illnesses are stigmatised and by accepting and forming an identity around the illness, the individual exposes themselves to the risk of discrimination and thus the individual finds themselves in a vicious cycle, torn between the need to gain support but risking their wellbeing and life chances through that exposure (Link & Phelan, 2001).

To be stigmatised, is to be judged by an aspect of one’s self that deviates from what is considered in society, to be normal (Baxter, 2010) and chronic illness becomes stigmatised when there is a belief that because of the illness, the person is less, tainted or less able (Stuber et al., 2008). Discrimination via a stigmatised illness is woven into every crevice of society from the media, healthcare, to employment, educational facilities and social groups (Marks et al. 2018).

Stigmatisation is oppressive and subjugates the individuals experiencing it, resulting in discrimination; guilt and shame when the individual internalises the stigma; reduced healthcare; reduced employment opportunities; social exclusion and can even result in emotional and physical abuse (Kadianaki, 2014; Link & Phelan, 2014; Marks et al., 2018). For example, in healthcare, Friedberg et al., (2008) conducted a study to explore what medical students believed about chronic fatigue syndrome. Whilst the symptoms of the illness are very real and often disabling (Lacerda et al., 2019), terms such as ‘lazy’ and ‘made up’ were used. Some of this knowledge was obtained from the media which has historically stigmatised the illness but also from the very doctors they were learning from as it has been shown that even in healthcare, stigmatisation is likely to occur and this can then impact upon the care that the patient receives (Marks et al., 2018). If the individual feels they may be disbelieved by a GP it could result in the patient feeling unsupported which may result in avoidance of seeking help altogether. (Åsbring & Närvänen, 2002).

In coping, some, underplay the effect of their illness, some deny it altogether. Some however, challenge the stigma, using it as a platform for personal transformation and raising awareness, fighting against the stigmatising labels that are imposed on them (Link & Phelan, 2014; Marks et al., 2018).

There are, however, groups who may be more or less psychologically sensitive to stigma. Those who have been raised to believe the world is fair may be less sensitive than those who do not believe the world is fair, such as those from a low socioeconomic background (Haslam et al., 2018). However, individuals with a high status may be more sensitive to stigma due to the very real fear of losing their status, due to the stigmatisation attached to the illness (Scheepers et al., 2009). Those who are sensitive to stigma may experience a higher perception of discrimination where it may not exist which can cause significant psychological stress (Earnshaw & Quinn, 2012).

The Equality Act (2010) exists to protect those not just with disabilities but also with any ‘impairment’ or alteration to the ability to manage daily activities, physically or mentally, from the stigmas that exist. However, whilst policies do exist, there is no escaping from unconscious bias. Unconscious bias is a strong relative to stigmatisation because even though laws are in place for equality, the very nature of unconscious bias is that it is outside of conscious awareness.

Stenhoff (2015) describes how educating those within the medical industry using the biopsychosocial model of illness may help medical practitioners to be more understanding of stigmatised chronic illnesses. These positive attitudes may create less stigma and create better physical and mental health outcomes (Nyblade et al., 2019). There is a potential solution in helping a patient to cope with the stigmas that exist. Helping a patient to improve their self-efficacy may help to reduce their fears and disclose the stigmatised illness, (Mittal et al., 2012) achieving peer and social support, asking for the flexibility and adaptations they need in order to work or be educated because with high self-efficacy, the person will have the belief that they can overcome these challenging obstacles and obtain the support they need.

Self-efficacy (SE) is the belief that one has, in the ability to achieve what they set out to achieve and the confidence in knowing they can overcome a range of life challenges (Bandura, 1977). In chronic illness an individual is presented with a range of challenges, including: having to adapt lifestyle factors such as work, home life including roles, and changing or adopting new health behaviours in order to effectively manage the illness (Wilski et al., 2020). When faced with a diagnosis or symptoms of a chronic illness, an individual with high SE will have the belief that the action they take will be positive and will see it not as a threat to one’s life but as an opportunity for growth (Zeligman et al., 2018). An example of someone with high SE, is someone who becomes self-employed in order to be provided with the flexibility a standard workplace cannot provide (Beatty, 2012), the individual has found a solution to overcome the obstacle.

SE can be measured and it can be improved upon (Schwarzer & Warner, 2013). The general self-efficacy scale is used to measure SE which is positive because if an individual presents with low SE, improving SE has been linked with a range of health improvements such as improved illness perception, depression and anxiety, decreased pain and fatigue and improved quality of life (Schwarzer & Warner 2013).

SE is improved via four domains and in chronic illness these relate to: mastery of tasks related to management and/or improvement of the illness (Bonsaksen, Solveig & Lerdal, 2015), witnessing others with similar illnesses who have successfully achievement of health improvement via management of the illness (Bonsaksen, Lerdal, & Fagermoen, 2012), verbal persuasion from healthcare professionals who are able to successfully counsel the individual to adopt the required management and self-care (Aujolat et al., 2008) and reduction of stress and management of positive emotions related to the illness (Bandura 2010). The effects of low SE may result in maladaptive coping behaviours. (Korpershoek et al., 2011).

However, whilst there are clear benefits to improving SE and SE transformation is possible, there are external factors when it comes to improving SE. An SE improvement program will amount to little if social systems are not in place to support the individual. In one example, Beatty (2012) found that whilst up to one-fifth of employees have a chronic illness, just half of those had disclosed their illness. The problem is that whilst policies exist to protect those with chronic illness, many of those policies do not reflect the specific needs and the flexibility required by those with chronic illnesses. If could be said that the individuals who do not disclose the illness, have low SE but if supportive systems are not in place, it can hinder efforts to create self-efficacy in the first place.

There are a multitude of psychological factors that impact upon an individual who is faced with chronic illness. Self-efficacy is one therapeutic asset that can assist with buffering the impact of the identity and stigmatisation issues discussed but it can also have a negative psychological impact if it is low. Stigmatisation exists throughout society and whilst it can have a profoundly negative impact on an individual, it can also be area for personal growth if the individual is able to stand up to it. When faced with chronic illness and the life changes it entails, one can lose their sense of identity, personal and social but one way this can be resolved is by accepting the illness and forming new identities. The overarching issue is that society has a large part to play in improvements relating to these issues, starting with educating those in healthcare and workplaces about the needs of those in the chronic illness population, uncovering and diminishing unconscious bias and re-writing policies to account for the needs of those with chronic illness. This in turn will improve the life chances for those with chronic illness and bring about more social acceptance overall.

References

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