A Forgotten Generation

How are we to appreciate and comprehend what it has been like to live with HIV and AIDS-related illness over the past three decades or more? When the AIDS pandemic began in the early 1980s, scientific knowledge and medical treatment had a limiting effect on quality of life and life expectancy for people living with HIV and AIDS-related illness. During this era the very idea of AIDS signified fear, panic, stigma, prejudice, acute chronic illness and the real threat of imminent death both within and outside of a UK context. As the global expansion of HIV scientific knowledge continues to develop, we observe a dramatic change in how the medical community defines HIV as a disease. The term AIDS has been largely discarded in the West and we resist the 'death sentence' scenario; instead we approach HIV as a chronic illness condition. With effective HIV combination therapies now available to those who can afford and access them, the successful management of HIV is perceived as within our reach. This story-of-stories brings together twenty eight long-term survivors all of whom were diagnosed between 1981 and 1994 prior to the advancement of HIV medicine; in some cases even before medical health checks for HIV, such as the CD4 count and viral load test were available. It is a passionate story-of-stories allowing the reader to become intimate with each story-teller who shared their personal experiences of living long-term with HIV and AIDS within a UK context: this is their gift We unearth how our story-tellers negotiated and managed everyday life living with this unpredictable illness condition based on in-depth interviews conducted during 2002. These poignant personal stories historically reflect upon long-term experiences of women and men living alongside HIV and AIDS-related illness; they show us how real people made sense of their lives and continued to 'live out' everyday life in the UK. It is a thorough and passionate portrayal of personal experiences revealed by the spirited women and men who took time out of their own lives to offer a valuable contribution to further public understanding of this stigmatised disease. By offering insights into different personal experiences of those who have lived long-term with an HIV-positive diagnosis, readers can appreciate and recognise the many ways of being HIV-positive. Chapter one explores how concepts such as health, illness and identity can be defined and how shared meanings differ between people who use these concepts on a daily basis. It also furnishes the reader with a brief history of HIV and AIDS to set the backdrop for how we should understand the potential dilemmas of living with a HIV-positive diagnosis during earlier more ignorant times. Chapter two reveals how story-tellers learned of their HIV-positive diagnosis. Chapter three examines the early years of living with HIV and explains how our story-tellers managed uncertainty. Chapter four discloses how sickness and health was negotiated and experienced before HIV medicine became more effective. In chapter five our story-tellers speak of how intimate and sexual relationships are experienced in the context of HIV. Chapters six and seven critically expose how long-term survivors experienced and negotiated complex and highly toxic combination therapies for the treatment of HIV in conjunction with relationships with the medical profession in earlier times. Chapter eight uncovers how networks of social support were negotiated and experienced over time. Following this, we reveal in chapter nine the positive and negative elements of living long-term with HIV or AIDS diagnoses. The final chapter delves into my own experiences as the researcher for the initial HIV study. The book offers an extensive glossary of medical terms at the back to assist readers in medical terms and words associated with HIV and AIDS.