In this article, we focus on adults with primary immunodeficiency disease (PID) and their experiences with gastrointestinal (GI) distress with the aim of exploring how they experience living with their condition and the actions they take to relieve GI distress. Twelve adults with PID and GI distress participated in semi-structured, in-depth interviews. The interviews were analyzed following the steps of thematic analysis (TA). The study revealed the complexity of the psychosocial aspects of living with PID and GI distress. Participants experienced GI distress to be highly challenging in daily life and felt they had to cope with the condition alone, without adequate help from the health care service. Participants used a wide and diverse range of coping strategies, and the search for normalcy was evident. Health care professionals should be more proactive in supporting individuals with PID in their struggle to find solutions to problems arising from GI distress.
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