Abstract
D.Litt. et Phil.
This study explored the impact of psoriasis on the self-concept (a multifaceted, hierarchical construct of self with both cognitive and emotional components) (Hattie & Marsh, 1996), of men and women who live with this cutaneous disease. Psoriasis is a common (frequently occurring), chronic inflammatory dermatological disease that can severely affect the sufferer's quality of life. While the underlying cause is unknown, the immediate cause of psoriasis is the rate of growth and differentiation of the outer layer of the skin. In a process known as hyper-proliferation (renewal of skin every four days as opposed to every 28 days), psoriasis is anatomically disfiguring. Symptoms include: the thickening of psoriatic plaques, the sloughing of silvery scales, severe itching of the affected areas and a thickening and yellowing of the fingernails. The severity of psoriasis varies from small scattered patches to total skin coverage (Young, 2005).
Chronic skin diseases, such as psoriasis, can affect one's self-concept at the level of the physical, emotional, social and spiritual dimensions of self (Kew, Nevin & Cruickshank, 2002). According to Gupta and Gupta (1995), sufferers of psoriasis experience external shame (fear of negative evaluations and stigmatisation) as well as internal body shame (negative self-evaluations and self-focussed feelings). According to Stake, Huff and Zand (1995), a disturbance in one dimension of self (e.g. the physical self-concept), invariably effects other self-dimensions (e.g. the private, social self-dimensions).
A study by Gupta and Gupta (1995) revealed that psoriasis was a major contributing factor to the onset of psychopathology such as depression, anxiety, unfocussed anger and obsessional behaviours. A study by Choi and Koo (as cited in Young, 2005), found that the impact of psoriasis on the psychological and emotional dimensions of self-concept to be comparable to that experienced by sufferers of more chronic diseases such as cancer, heart disease and clinical depression.
General healthcare providers who treat the medical components of psoriasis may be surprised to learn that the emotional and social burdens of psoriasis are often greater than the physical toll of psoriasis on patients. Further, psoriasis is observed to be persistent, unpredictable and stressful over longer periods of time than more serious illnesses (Young, 2005). Although many people with disfiguring skin disorders cope remarkably well psychologically and socially, many do not and may require professional help in describing their bodily being in relation to the world and to come to terms with the positive and negative aspects of self (Van Deurzen-Smith, 1997).
Significantly, studies in psychoneuroendocrineimmunology have shown the interconnectedness of emotions and mental attitude to physical health and which underscores the importance of treating the whole person and not just the symptoms (Linsteadt, 2002). Consistently, studies have shown the importance of self-concept to psychological health (Francis, 2002; Hattie & Marsh, 1996; Newell, 2000; Young, 2005) and body satisfaction as being pivotal in one's overall concept of self (Tiggemann & Williamson, 2000). Problematic however is that the literature indicates a dearth of dermatological studies detailing the meaning-making experiences of individuals who have undergone changes to their physical appearance as a result of this and the impact of cutaneous disease on the self-concept (Hill, 2004; Papadopoulos, Bor & Legg, 1999; Thompson & Kent, 2001).
Our experiences and how we make sense of what we experience is primarily dependent upon the kinds of bodies we have and also on the ways we interact with the various environments we inhabit. It is through our embodied interactions that we inhabit a world, and it is through our bodies that we are able to understand and act within this world with varying degrees of success (Johnson, 1999). The importance of skin for an individual's psychosocial equilibrium can easily be appreciated. First, the skin represents the outward packaging of our being. Second, the cutaneous surface is what society initially perceives and with dermatological disease being the basis for social stigma. Arguably, having a healthy, unblemished skin can enhance one's self-esteem, self-identity and not infrequently, one's social standing (Koo & Yeung, 2002).
Studies investigating the impact of disfiguring cutaneous disease on the self-concept appear to be lacking in the literature. In 2004, at a meeting of the Editorial Board for the Journal of Dermatology Nursing, the need for studies presenting the patient's experience of cutaneous disease was discussed. It was thought that qualitative exploration of the patient's experience of cutaneous disease would provide medical and mental healthcare professionals with valuable insights and important information to help improve dermatology patient care (Hill, 2004).
Dermatology and self-concept phenomena tend to be investigated interdependently of each other. Furthermore, the majority of research in this area focuses on quantitative research design. Consequently, much of the depth of information regarding the experiential world of sufferers of cutaneous disease is invariably lost (Hill, 2004; Thompson & Kent, 2001).
In light of that stated above, this study explored the meaning-making experience of men and women who suffer from psoriasis and the impact of this on the various dimensions of the self-concept. Due to the sparsity of South African studies investigating qualitatively, the experiences of persons suffering from a common, chronic dermatological condition, this study followed an existential phenomenological approach in describing the impact of psoriasis on the self-concept as told from the perspective of the men and women who live with this.
Existential phenomenology seeks to explicate the essence, structure and form of both human experiences and behaviour as revealed through essentially descriptive techniques that includes disciplined reflection (Sokolowski, 2000). Given the apparent lack of awareness and knowledge of psychological processes, meaning-making and coping strategies utilised by psoriasis sufferers in their experience of this, this methodology was thought most appropriate (Hill, 2004; Newell, 2000; Papadopoulos, et al., 1999; Thompson & Kent, 2001).
In terms of the areas of participation, three male and four female sufferers of psoriasis participated in the study. For all participants, psoriasis was in the active phase and covered most parts of their body. Data was collected using a questionnaire set consisting of semi-structured questions and the research question, which was open-ended. The method of data analysis was based on an integration of the works by various phenomenologists and involved six phases, namely: bracketing, intuitive grasp, eidetic reduction, textural and structural descriptions, composite textural and structural descriptions, and the final synthesis. The participants confirmed that the statements generated were accurately reflected.
The results evidenced several prominent themes shared by the group, namely: (a) that the severity of the physical manifestations and the painful symptoms of psoriasis can result in negative self-concept evaluations; (b) a lack of empathy and a failure to provide knowledge on psoriasis and a priori caution of the side-effects of psoriatic medications by the medical doctors consulted was experienced by the participants as disempowering and adversely affected their emotional well-being; (c) the doctor/patient relationship was observed as pivotal in influencing the participants general concept of self; (d) the participants acceded that medical aids need to place psoriasis on the list of chronic medical conditions; (e) social stigma adversely affects self-concept evaluations; (f) public education on psoriasis is required; (g) drawing on various methods of coping was deemed crucial to the enhancement of the self-concept in the participants journey towards psychological health; (h) positive meaning-making from the psoriatic/self-concept experience enhanced quality of life issues; and finally, (i) trait self-esteem and healthy self-concept development may be important determinant factors in the psychological recovery of patients suffering from psoriasis.
More specifically, in terms of self-evaluation, the participants experienced psoriasis as an assault on the physical self that was painful, embarrassing and humiliating. In redefining psoriasis in this way, the participants redefined their body image (mental construct of the body), and with the pervasiveness of negative self-evaluations an offshoot of continuous negative cognitive and emotional schemas of the body.
Regarding the doctor/patient relationship, the results of the study show a need for medical doctors to expand their focus of treating the symptoms of psoriasis to incorporate a more holistic treatment approach that places emphasis on psychological, social and nutritional processes. The willingness of medical professionals to network with psychologists and other healthcare professionals and also being prepared to integrate the concept of holism into their treatment programmes was thought one method of attaining a holistic approach to the treatment and management of dermatology patients. Significantly, the doctor/patient relationship was also experienced as being an important factor in the patients drive to want to heal (healing is not here equated with cure but rather being able to approach living with psoriasis more positively).
The participants in this study experienced doctors to be largely unsympathetic and not well versed in the physiology of psoriasis. Additionally, the degree of psychological trauma experienced by the participants in their suffering with psoriasis seemed to go unnoticed by the treating doctors. To this end, helplessness and feelings of disempowerment were heightened. In terms of treatment implications, the participants claimed that their treating doctors failed to inform them of the severity of the side-effects, the dangers of various treatments, and the possible inefficacy of many treatments utilised. The participants experience of this resulted in the following: a) diminished trust in the doctor/patient relationship and the medical profession generally; b) heightened body shame and repulsion of self (as opposed to feeling repulsed by the psoriasis alone); c) intense anger and with some participants describing emotional anarchy; and finally, d) in feeling left out of the treatment decision-making process, participants felt as though they had lost control over their own body.
In terms of medical aid support, the participants pointed out that psoriasis is not on the government approved list of chronic conditions and as such, given their experiences, acceded that this is something that needed to be challenged.
Regarding social stigma, the participants’ experience of this appeared to result in re-enforcing a sense of their feeling socially shunned and physically alienated from their familiar body. Furthermore, it would appear that social stigma might play a participatory role in increasing the severity of the psoriatic condition due to the stress evoked in the experience of feeling socially stigmatised and also the heightening of psychological difficulties experienced as participants moved from pride to shame. All participants felt public education and awareness of the onset, cause and course of psoriasis was required.
Methods of coping utilised by the participants included: the seeking out of empathetic medical practitioners, psychotherapy, hypnotherapy, assertiveness skills training, implementing spirituality in their lives, and drawing upon the support of family and friends. Finally, in the midst of much adversity, the participants found an inner strength from which to reclaim their sense of self and which they attribute to having had a positive demeanour prior to suffering from psoriasis. In the deconstruction (fracturing) of self, the participants seemed to have felt compelled into a process of change that could be characterised as a reconstruction of self - an evolving of the old and new dimensions of self that would evolve further into a stronger and more resilient sense of self that characterises the participants today.
The participants to this study embarked upon a journey of self-empowerment and which was a defining factor in their making meaning from their suffering. Not alluded to in the literature is that, for the participants, psoriasis became a tool that they utilised to reclaim their lives and to re-build the self anew.
The results of this study reveal many important areas for future research with persons suffering from psoriasis and dermatological conditions generally, such as: i) the focussing on levels of trait self-esteem in effecting how positive change in one's self-concept may or may not occur; ii) the exploration of disfiguring skin conditions as an impetus for self-concept enhancement and creating meaning in one’s life; iii) exploring the efficacy of combining psychotherapy with medical treatments in the management of dermatology patients; iv) exploring the role of the doctor/patient relationship in the patient’s drive towards psychological health and treatment compliance; and finally, v) exploring the impact of dermatological disease on the family of the sufferer, especially given the significance of the familial system in the sufferers coping.
Importantly, the results of this study suggest that having a healthy self-concept prior to the development of illness or disease is pivotal in accounting for why some people recover remarkably well psychologically and others do not. The findings of this study are valuable and will have important implications for all within the healing profession in helping to effect positive change in their future endeavours with persons who suffer from dermatological disease.