“I Wish Everyone Would Understand How Isolating being Chronically Ill Can Be” : A Qualitative Study on Teenagers’ Experiences of Everyday Life with Dysautonomia

Abstract: “Dysautonomia” or a dysfunction of the autonomic nervous system, affects approximately 70 million children and adults worldwide. Despite this, a small fraction of studies focus on the experiences of children and teenagers' living with conditions related to dysautonomia. The aim of this study is thus to explore the experiences and perspective of teenagers living with dysautonomia, by focusing on how they describe their lives in relation to being chronically ill and how they view the relationships among themselves, their doctors and their peers. The study entails a social constructionist and an interpretative phenomenological approach, which focuses on the lived experiences of the teenagers. To collect the data, an email questionnaire1 was conducted with 16 teenagers from different parts of the world. The data was analyzed with the help of a thematic analysis. Seven themes were identified under my areas of interest; a regular day, relationships with peers and relationships with doctors. The results indicated that dysautonomia, similar to other chronic illnesses, was reducing life quality. The results also indicated that most days were spent trying to distract themselves from their illnesses. The participants described feelings related to uncertainty, fear, loneliness and grief. Difficulties remaining socially active and maintaining friendships were described by some of the participants. Relationships with peers were described as both supportive and unsupportive and were often described in terms of healthy and sick peer groups. The doctor-patient relationship was described in terms of good and bad qualities. Although all participants described feeling dismissed, belittled and accused of making their symptoms and illnesses up in their heads, some also described the opposite - the good and respectful listener, who valued the autonomy of the participants.