Introduction: We're well but were not happy

A survey that came out shortly before this chapter was written shed a revealing insight into the needs of people with HIV in Europe.

The European HIV Quality of Life Review (European Men’s Health Forum) interviewed 534 people with HIV (24% of them women) from six European countries, plus African immigrants in those countries, about their health and HIV treatment, their satisfaction with their medical services, and their levels of satisfaction with work, relationships and general well-being.

With some simplification (merging ‘very dissatisfied’ with ‘dissatisfied’ and ‘very satisfied’ with ‘satisfied’), the results look like this:

People were considerably more satisfied than not with their HIV treatment, their physical well-being, and their experience of health services. But only a minority were truly satisfied with their social life, their work and career, and their emotional well- being.

In other words HIV treatment and their physical health had a net positive effect on their overall quality of life. But their mental health, and their ability to fit in with normal life outside being a patient had a net negative effect.

Because surveys ask different questions it is difficult to say what the responses of another group of people or of patients with a different chronic condition would have been.

However it is at least superficially surprising that a group of people who suffer from one of the most feared and intractable illnesses in the world should, of all areas of life that may cause unhappiness, be least bothered about their health.

Or is it? In the developed world, through an extraordinary scientific effort, AIDS has been turned from a lethal affliction into a chronic manageable condition. This has involved people with HIV having hundreds of millions of pounds and years of health workers’ and scientists’ time being spent on them.

When the tide of deaths recedes, people with HIV may feel stranded and left to cope alone:

• They may be left to deal with personal issues like depression or addictions that contributed to their becoming HIV positive in the first place (see ‘mental health and sexual health’ and ‘long term mental health issues’)
• If they are newly diagnosed, they may feel shame for ‘not having known better’ (see ‘adjustment disorders: reactions to diagnosis’)
• They find themselves living with a stigmatised and isolating condition and may be afraid to disclose what feels like the most significant fact in their lives to anyone
• They may miss a sense of being special, as ‘plague victims’ and objects of the compassion of celebrities (see the Lazarus effect: reactions to recovery’)
• They may find themselves having to restart a career prematurely terminated by AIDS
• If they are long-term survivors, they may have lost partners and/or an entire supportive generation of friends to AIDS
• They are faced with having to negotiate a sex and love life in the face not only of possible rejection but of internalised shame about their condition and concern with body image (see ‘social issues: isolation and stigma’)
• Body changes may be imagined, but may be a real consequence of HIV treatment, and some treatments themselves cause psychological side effects

But before we can explore these issues, we have to answer two fundamental questions first.

• What exactly is ‘mental illness’?
• Is it true that people with HIV suffer higher rates of it?