Resiliency and Success in Adults With Moebius Syndrome

Abstract

The recognition and reinforcement of strengths and resiliences in younger patients may help maximize their professional and personal success as adults.

A qualitative study of the experiences of people who identify themselves as having adjusted positively to a visible difference

“…Determination has previously been related to better adjustment to chronic illness (e.g. Lo and MacLean, 2001) and, in the disfigurement literature, Meyerson (2001) identified it as a way of bolstering resilience.…”

“…Thompson and Broom (2009) also refer to specific types of humour used in relation to coping with a visible difference, namely sarcasm, understatement and self-deprecation. Other disfigurement research has identified humour as a source of resilience and strength (Meyerson, 2001). More generally, 'coping humour' has been described as the use of humour to manage a situation that threatens one's usual pattern of living (Martin, 1996) and it is thought to help diffuse emotions in adverse circumstances.…”

“…Katz et al, 2001;Sodergren and Hyland, 2000;Sodergren et al, 2004), there is currently little research focusing on positive outcomes and experiences associated with a visible difference. That which has been conducted has shown that humour, a good sense of self, family support and faith all contributed to resilience and success among individuals with Moebius syndrome (a congenital condition characterized by lack of facial movement) (Meyerson, 2001), while inner strength and a valued social circle have been identified in those with a craniofacial difference (Eiserman, 2001). These studies, and others (e.g.…”

Social interaction experiences of adults with Moebius Syndrome: A focus group

“…As such, we recommend that people with MoS take on the responsibility to educate others people who might play important roles in their lives. Educating others gives the person with MoS control over the situation, allows them to manage others' impressions, raise awareness, and can make both parties feel more comfortable (Egan et al, 2011;Meyerson, 2001). …”

“…Through focus groups and interviews with resilient individuals with visible difference, Egan et al (2011) found themes of importance of appearance, personal growth, relationships with others, and coping. Similarly Meyerson (2001) examined resiliency and success in adults with MoS and identified factors leading to resiliency and success: humor, determination to surpass others' lowered expectations of them, sense of self, special skills, family support, networking, and faith.…”