Marked by Visibility of Psoriasis in Everyday Life

Abstract

In this study, the authors aimed at a sociological approach to the individual's everyday life with psoriasis and to this end conducted qualitative interviews with 18 persons from a county in northern Sweden. The most difficult aspects of living with psoriasis were being marked by the visibility of psoriasis, especially in the younger ages, and the visibility of joint changes. Therefore, those with both rashes and joint changes felt marked and discredited in a twofold way. Commonly used coping strategies were routinization of both the treatment and the adjustment to the marking process, and acceptance, and these strategies developed with age. Most participants experienced a good quality of life but still could find nothing positive about psoriasis. The authors suggest efforts toward increased awareness among health care professionals of the marking process and future qualitative studies about experiences of psoriasis during adolescence.

Self-Management in Daily Life with Psoriasis: An Integrative Review of Patient Needs for Structured Education

“…In a trans-European study, 48% of the patients reported that their quality of life was affected in relation to physical appearance [48]. For both men and women, the greatest difficulty of living with psoriasis was the sense of being marked by the disease [38, 49]. Such experiences are described as a sense that other people tend to scrutinize and judge them, their character and inner world according to the appearance of their skin [53], or more correctly their own perception of this appearance [38].…”

Priority dilemmas in psoriasis care and visions of a future care in a group of administrators, politicians and professionals in northern Sweden

“…Importantly, the power over the patient's life should rest in her/his own hands. In a previous study of ours the patients have shown their power, not only over their bodies [46], but also over their whole lives, for instance by coping with treatment of psoriasis as well as with the stigmatizing process by turning these coping strategies into routines in their everyday life and providing for a good enough personal quality of life for themselves [14]. Thus we see the patients as important participants in deliberation groups regarding priority setting.…”

“…The project includes previous studies of economic and social consequences of the disease [24,14], determinants of perceived health-related quality of life [12], and in this study, professionals, administrators and politicians' views on priorities in psoriasis care and visions of a future care.…”

“…The severity of psoriasis varies and the disease is usually not life threatening [11]. However, other consequences of the disease which may include suffering are documented, such as impaired health-related quality of life [12], and that persons with psoriasis may be stigmatized [13,14]. Furthermore, a person with moderate to severe psoriasis needs regular treatment entailing high costs and possibly leading to financial difficulties for the individual [15], or to withdrawal from treatment which in turn may lead to the risk of an impaired healthrelated quality of life, especially among women [12].…”

Cartographies of Differences

“…But he is not seeking to underestimate embodiment: "…my particular critique of physiognomy is not about excluding the body from our self-constitution, but about resisting the body's entrapment within physiognomic discourse that tends to define our bodies for us" (Twine, 2002, p.83) Individuals who live with visible facial differences experience higher social visibility. Their difference can affect interactions with other people as well as feelings about the self (Rumsey and Harcourt 2005;Uttjek et al, 2007;Feragen, 2012). But Twine (2002) questions the value of popular faith in direct representational relationships between a visual appearance and generalised meaning.…”