The Struggle for Recognition, Qualitative Research on People with the Q-fever Fatigue Syndrome in the Netherlands
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2018-07-04
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en
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In 2007, the largest outbreak of Q-fever worldwide occurred in the Netherlands. Still, Q-fever is not recognized as a threat to public health, while it is classified as a category B bioterrorism agent. This qualitative Master research examines dominant notions of disease in regard to people suffering from an unrecognized disease, such as Q-fever. This provides a more social perspective on their daily challenges, by bringing into view lived experiences of diseases that are unrecognized. In this way, I provide a central research question, which is: How do people with QFS experience being ill in Dutch society, where their disease is not recognized? My empirical and theoretical findings consist of the struggle for recognition among family, within healthcare and with regard to work. These three themes guide my empirical chapters, where I discuss empirically and theoretically the dominant notions of disease, expectations and responsibilities of the participation society and the lack of social recognition concerning people feeling ill with an unrecognized disease. These offer insights on the experience of my 22 informants with the Q-fever Fatigue Syndrome (QFS). Additionally, two medical advisors bear insights in the experiences of my informants with QFS. QFS is a rather young disease in the Netherlands, but it has such a huge impact on my informants lives that their everyday life has changed drastically since they got infected. Therefore, it is imperative to offer ways to create social recognition for QFS patients among families, within healthcare, and with regard to work. I argue in this thesis that dominant notions of disease in the Dutch public discourse have to be critically examined through the experiences of people. In the Netherlands, there is no discursive room for people who feel chronically ill with an unrecognized disease. Consequently, people with QFS, who feel chronically ill with an unrecognized disease, socially exclude themselves from society and depend on family members to remain a part of society. They slowly fade away from the public discourse and withdraw themselves into solitude.
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Faculteit der Sociale Wetenschappen