The Diabetes World: The Development of Sense of Self and Identity in Adults with Early-Onser Type 1 Diabetes
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Authors
Bernstein, Jessica
Issue Date
2004
Type
Dissertation
Language
en
Keywords
Alternative Title
Abstract
The present study examined the impact of early onset Type 1 diabetes on the development of the self and identity in 10 men and 10 women age 20 or older who were diagnosed at age five or younger. This study aimed to provide insight into the intrinsic effects of a chronic illness, as distinct from the adaptive process that occurs when a person is diagnosed later in life. The study employed a qualitative approach of descriptive research in which systematic descriptions of the data were provided. This study found that participants generally felt fortunate to have developed. diabetes at a younger age, as they did not have to cope with the process of adjustment. Respondents mostly reported that the diabetes had become integrated into their sense of self. Some, however, personified the condition as an external force when they perceived the diabetes as threatening to their well-being . A number of character traits were thought to have developed in response to living with diabetes, such as: being cautious; disciplined , regimented , or vigilant; skilled in planning and organization; feeling greater appreciation of health and being more health conscious; being proud of surviving so long; developing inner strength; and feeling greater appreciation for life. Most respondents chose not to openly disclose their condition during childhood, but became more open with age, as they experienced personal and social acceptance. All of the participants expressed having felt some degree of difference when interacting with people who did not have the condition . When stigmatized , participants became shy or introverted, felt a need to prove their normalcy, or avoided attention. Some respondents felt that their differences made them special. Participants perceived a general lack of understanding among people not living with the condition . As a result, some felt angry, frustrated, guilty, or dis-empowered . Those with less intrusive symptoms and treatment regimens were less affected. Many developed skepticism and lost respect for medical professionals after years of contact as they came to reject the notion that physicians are infallible. As a result, respondents insisted on collaborative decision making regarding treatment. Knowing others during childhood who were also living with diabetes allowed participants to feel a sense of belonging, kinship, and to normalize their experience as they came to recognize their place in a larger diabetes world.