Telling people

The lunchtime after finding out I had HIV, I called a colleague who was also a close friend. I had planned just to make sure I could see her in the evening when I got back to town. But she could hear something terrible in my voice and asked whether something was wrong. I admitted there was, but still didn’t want to tell her the shocking news on the phone. It had to be carefully done and I had hardly absorbed the reality. But it blurted out, and this first person I had chosen to tell I knew was strong in a crisis. Nevertheless, I found myself reassuring her that I was coping while seeking assurance that we would meet that night and talk it through.

A few weeks after finding out that I had HIV I told my aunt, the family member to whom I felt the closest.

Why tell anyone? Because I thought I was going to die young (this was back in 1990, before effective HIV treatment was available).  How could I not tell the people who really loved me? However upsetting it was going to be, for us both, how much worse for them to have to be told when it becomes obvious that things were dire. If your meaningful relationships are based on truth, how then can you allow in a mammoth lie? I imagined them reckoning what the real value of our love was if I had protected them from the truth until the last possible moment, however well meaning my intentions. Why had I not given them the opportunity to love me and care for me through my ordeal? Love is not just for the good times.

Also, quite selfishly, I needed to tell some people. I needed their care. I needed them to know so that they could prepare for helping me through the worst. I needed people I could trust to talk through all the issues and implications. I wasn’t strong enough to do this on my own.

After careful thought, my aunt’s brilliant response was to clear my quite substantial debts as something to reduce stress. This allowed me to give up being a lawyer and find less stressful work. I wasn’t going to give up on life until I had to, but I was going to make it less strenuous. Reducing stress was a treatment without risk.

A few months later, for the same twin reasons of need for honesty and support, I decided to tell my parents. They were retired, less worldly than my aunt, and there was the fear of what the shock would do to them. But they would have wanted to know and have the opportunity to do what they could to help. I travelled down to see them for a weekend with that friend I’d first told. At least I had all the available information at my fingertips and I could explain it to them as calmly as possible, but I also needed that friend with me. She was able to spend her own time talking with my folks. For them to hear the information again calmly from a third person would help them. It would help me. Having to take some control of immediate emotions a little in front of a relatively unknown person would help the stiff upper lip. There were still lots of tears of course. It’s a big thing to hear that your only child has probably only very few years to live; but they coped. Their main concern was how they could help.

The next person I told was my then lover. Again, you cannot have a successful relationship built upon a lie, but I also wanted him to be able to make the choices about a future together with full knowledge of the issues. As it happened, he left me after only a few months but not because of the HIV; he hadn’t sorted out his own sexuality.

I have not told many people, and I have never had a bad reaction. Only very close friends and family know. I think they are the only people who should, or need to know. One exception was an ex-colleague and neighbour who was going through a very stressful time because of an unwanted divorce. She was desperately unhappy and grieving her loss. Perversely perhaps, I chose to tell her of my burden, which at the time still meant an early death, so as to try to put her ordeal into some context. It worked. I’ve never told an employer and thus have had to lie on some forms. There is still so much ignorance out there about the virus. Similarly I’ve avoided any further health or life insurance so as to avoid making a false declaration.

Two weeks after we started going out, I told my current partner. I took him for a walk in the park and sitting on a bench in the sunshine told him the truth. He cried, not just for me but also for him; because he said he wished we had met earlier so that we could have had longer together. Lucky me, he is still my partner after over twelve years and our Civil Partnership is at the end of this month. We live a full life.

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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.