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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. In exploring connections between bodily experience, emotion, learning and cognition, and asking whether these connections differ according to gender, age and other differences, this paper argues that individual experience can never be understood outside of social, cultural and collective experiences. The relationship between lifelong learning and lifelong illness is complex and multi‐faceted, but clearly learning has been an important element in the respondents' ability to cope with lifelong illness. In the words of one respondent, ‘I spent so many years feeling vulnerable and at the mercy of an illness that I didn't understand, I have found learning about it to be very empowering. It gives me a way of taking control over something which previously controlled me completely'. There are several issues that could be further developed. I did not, for example, ask what definitions of disability respondents were using when they replied to my question ‘do you consider yourself disabled?', nor did I gain sufficient information to explore gendered or classed experiences in the way people gained information about their condition, including the sharing of experiences with each other. There are also differing engagements with learning regarding age, geography and so forth which could be further developed. In addition, the responses to the questionnaires represent current thinking about past memories and actions, and do not represent a longitudinal study. Nevertheless, the findings in this paper could have implications for the role of learning in the management of lifelong illness.