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A forgotten generation: Long-term survivors' experiences of HIV and AIDS

A forgotten generation: Long-term survivors' experiences of HIV and AIDS [Kindle Edition]

Judith Mary Sagar
3.0 out of 5 stars  See all reviews (2 customer reviews)

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Product Description

Product Description

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.

Product details

  • Format: Kindle Edition
  • File Size: 1180 KB
  • Print Length: 447 pages
  • Publisher: Judith Mary Sagar (26 Jan 2014)
  • Sold by: Amazon Media EU S.à r.l.
  • Language: English
  • Text-to-Speech: Enabled
  • X-Ray:
  • Average Customer Review: 3.0 out of 5 stars  See all reviews (2 customer reviews)
  • Amazon Bestsellers Rank: #475,905 Paid in Kindle Store (See Top 100 Paid in Kindle Store)
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Most Helpful Customer Reviews
1 of 1 people found the following review helpful
5.0 out of 5 stars Inspiring 28 Jan 2014
An extremely thought provoking read, sensitively capturing the lives of those living with HIV from their perspectives during an uncertain time. The author has carefully woven together these stories, which otherwise may have been lost.
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1 of 5 people found the following review helpful
1.0 out of 5 stars Don't. Just don't. 17 Dec 2013
Format:Kindle Edition|Verified Purchase
It’s way past time that a history of HIV were compiled from the memories of those who know it best: the long term survivors. Unfortunately this book is not it.

Because of an attempt to de-clutter the bookshelves and the difficulty I have in holding large books comfortably I made the switch to Kindle at the beginning of this year and am re-discovering the joy of reading again: so many words, so little weight! I mention this because “A Forgotten Generation” isn’t, like many Kindle books supplied with page numbers, or an x-ray view of the text, although it does have text to speech capabilities.

The bulk of the book is based on interviews that took place in 2002, so despite the author’s attempts to place a more modern gloss on her text, she fails. In 2002 we’d seen the failure of the first generation of drugs, the beginnings of success with second generation drugs (but not their subsequent failure) and the third, current, wave of drugs were just becoming available.

Even ten years ago we were still taking drugs that we knew were damaging to our bodies, but were keeping us alive. ddI, for example is only mentioned as a horsepill that needed to be crushed and mixed with apple juice to make a vomit-inducing drink. Protease inhibitors are new territory and drugs like truvada, the back-bone of many combinations is still a couple of years in the future.

Our attitudes, whether to our carers, our medication or our illness was also very different in 2002. It speaks volumes that each chapter ends with a series of questions to the reader about how they react to the material in that chapter. Each question is asked as though the person being questioned is HIV negative. We, the people living with HIV, are objects of study.
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Most Helpful Customer Reviews on (beta) 5.0 out of 5 stars  1 review
5.0 out of 5 stars A Forgotton generation 23 Jan 2014
By debbie jolly - Published on
This book is a classic . It should be read by all, and those in the HIV field, health professionals and practioners, and students. It details the stories of survivors and their journeys with the medical profession, family and friends and looks at each journey of the 'story tellers' from a sociological views. It certainly made me think differently.
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