Living With Constant Suffering: A Different Life Following the Diagnosis of HIV

We used grounded theory in semi-structured interviews with 32 persons living with HIV (PLWH) in Barcelona, Spain, and found that PLWH live with constant suffering, a core category combining four realities: I need help; My life is constantly controlled; I have a new imposed life; and I have an uncertain reality. Participants described being constantly controlled by health policies and medications. They thought their lives were in the hands of others and that a new life, characterized by the constant fear of stigma, had been imposed on them. They felt they were losing freedom and vitality, as many questions remained unanswered, causing uncertainty related to health and public life. Emotional help was obtained mainly from peers and social networks. Our emergent theory shows a disruptive experience, with serious consequences to individual and social development. Health care has to focus on the real needs of PLWH to reduce suffering and uncertainty.