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This paper explores the ways in which people with lifelong chronic illness engage with learning, and how learning impacts on the ways in which they learn to live with their illness. It considers their engagement with and changing focus of learning at different stages: prior to diagnosis, at about the time of diagnosis, and as their understanding of their condition deepens. It asks how knowledge of their illness affects people's learning, and whether (and in what ways) learning enables them to deal with their condition. Questionnaires were distributed through the Primary Immunodeficiency Association (PiA) website; via immunology nurses; and through personal contact. Although I had a small rate of return on the questionnaires (22 returned in total), several respondents who completed questionnaires gave their contact details so we could explore the issues further, and I interviewed eight people in greater depth.