Late in, 1984, when I was tested, HIV had only just been identified as the cause of AIDS.

There was no formal counselling before or after testing, no organised emotional or social support in the community and certainly no prospect of treatment. The doctor who gave me the positive test result told me, kindly, that I seemed the sort of person who would be able to cope.

Initial reactions

I was very frightened. I was convinced I was going to die painfully and soon. I felt very alone. I knew no one else in the same situation. Public fear of AIDS and stigmatisation of “AIDS carriers” were at their height. Confiding in people, even friends, risked hostility and rejection, but I knew equally that friendships would not survive the level of deceit needed to conceal something so devasting. I thought I would never know sexual intimacy or love again. At that time, safer sex was not common behaviour; asking for it could raise the suspicion in a potential partner's mind that you “had AIDS” and no one, I thought, could possibly want to be intimate with or have a relationship with someone who had the “AIDS virus”.

I expected, through illness, to lose my income, my security, my independence, my dignity and my self-esteem. I came to realise how much the things that give a life meaning and purpose — aspirations, dreams, motivation, hope, endurance, fulfilment — depend on the unconscious assumption of a future. Coping with HIV meant firstly coming to terms with the loss of that assumed future and secondly trying to give life some meaning and purpose in its absence. This comes with hindsight. At the time I couldn't cope at all and spent much of the first few weeks after diagnosis drunk or tranquillised.

Peer support, counselling and referral

At the end of 1984 the Terrence Higgins Trust established its first support group for people diagnosed with HIV.

The potential psychological and social impact of a positive HIV antibody test result are now well understood, as is the importance of counselling and referral to agencies that can support people emotionally and practically as they come to terms with the diagnosis and its implications for their lives. For many people, peer support continues to be a key part of that process.

Coping with uncertainty

It took some time for it to sink in that the positive result wasn't necessarily a sentence of imminent death, but no one could tell me how long I had to live. In many ways an AIDS diagnosis would have been easier; it would have given me something concrete to deal with. Being HIV antibody positive was a kind of limbo where you knew the axe would fall, but never when.

How people cope with this kind of uncertainty probably reflects how they cope with uncertainty in other areas of their lives; some avoid thinking about the future if it threatens contentment in the present, some throw themselves ag g ressively into trying to shorten the odds in their favour, some fatalistically assume the worst and prepare themselves for it.

My way of coping was to throw myself into community work developing services for people with HIV and prevention campaigns and establishing Body Positive. This was the first self-help group in the UK, and perhaps the world, for people with HIV. If I couldn't fight the HIV inside me, I could at least fight the HIV outside me.

One would very occasionally hear someone with HIV say that the diagnosis was the best thing that had ever happened to them. More than any other event or crisis, it forced them to think about what was important and re-arrange their lives accordingly. Certainly, the years after my own diagnosis were lived with an intensity and with a sense of fulfilment in my work that would probably not have been achievable without HIV to concentrate the mind.

Retirement

In the early 1990s my CD4 count, which had been declining very slowly over time, suddenly seemed to plummet and I developed some minor illnesses. In fact, the CD4 count never fell below the lower limit of what would be considered a normal range, but I convinced myself that the suddenly rapid decline meant that the deterioration to AIDS had begun. I retired from work, cashed in my pension and bought a nice place by the sea in which to pass my remaining few years. I had achieved what I needed — to feel that I had done something useful with my life — and I was completely ready for death.

After leaving work, my CD4 count stopped declining and I remained well. In retrospect, the retirement was probably necessary as I was almost certainly approaching “burn-out”, but it felt at the time as though HIV had fooled me into a premature withdrawal from life.

During 1997 my viral load started to double every three months and I began combination therapy. Since then my CD4 count has dropped below 500 only once, when I became resistant to one of the drugs. Since changing the combination, my viral load has been undetectable.

Living with HIV in the era of combination therapy It is sometimes assumed that combination therapy has transformed the lives of people with HIV. Well, yes and no.

This brings dilemmas of its own. For example, many healthy people in mid-life seeing an advertisement for a pension plan might wish they could put more money aside for their old age. But an HIV antibody positive person has to ask him/herself “do I spend money and enjoy life now because there may not be an old age to save for, and risk impoverishment if there is; or do I save for old age and risk lying on a hospital bed in a year or two's time regretting not spending my money and living life to the full while I was well?”.

I can only imagine how much more acute and agonising dilemmas of this kind — involving trade-offs between present and future — must be in families where a parent and possibly also a child has HIV.

There are other trade-offs, some more difficult than others. Never, for example, during all the years before combination therapy did I have to adapt my life to a medication regimen. It took some time to learn full adherence to the regimen, initially, I would simply forget very occasionally to take a dose when due. But, more fundamentally, adherence involves restricting freedoms that most of us take for granted — to eat what you want when you want, for example. It was difficult to adjust to my freedom being compromised by the treatment rather than the disease itself, although viewed in the light of the benefits of the treatment, these compromises were insignificant.

Although public education has removed much of the fear and prejudice surrounding HIV and AIDS, there are communities where HIV remains highly stigmatised and where people with HIV are discriminated against. Discrimination, real or perceived, restricts the choices one is able to make in life; it limits life's potential — a cruel irony when medicine has found ways to prolong life with HIV.

Nor does combination therapy remove anxieties about falling in love and sexual intimacy.

The HIV “veteran”

I was aware before combination therapy arrived that I had remained well for an unusually long time since diagnosis. Now it seems that combination therapy may keep me alive and possibly well for many years more. During the millennium celebrations it occurred to me that, if adulthood begins at 18 years, I have lived with HIV for over half my adult life.

I read recently that there is sometimes a striking similarity in how long-term survivors of HIV and war veterans describe their feelings about life. Both have had to confront their own mortality in a way that has led them to question, and sometimes reject, many of the assumptions which most people rely on to get through life. Large numbers of their peers and people they loved have died. As time goes on there there are fewer and fewer people with whom they have a shared life experience. War might have made life more intense for a while, but with the perspective of long hindsight there is some bitterness about the damage it has done to their lives. They have a strange sense of not knowing quite where they belong. This describes me pretty well.

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