I wasn't going to let HIV beat me

Tim was diagnosed at the height of the HIV/AIDS pandemic in the mid-eighties. This look-back at the situation then is a stark contrast to how things are now. Tim went to San Francisco to be tested due to concerns around confidentiality in the UK and at the time of diagnosis no treatment was available. Now in 2016 testing is both free and anonymous; multiple options for treatment exist and people living with HIV can enjoy a healthy life.

This story is only one of many that has been shared with us and it does not represent the experiences of all people living with HIV. If you have a different story, we'd like to hear it - please do get in touch.

I was diagnosed in September 1985 in San Francisco

I was 36 then. I first went to the clinic in Edinburgh and the consultant there thought I might have HIV because I had enlarged glands. It is possible he may have actually checked; in those days they were testing without people's permission. Anyway, I'd had unusual flu symptoms and he said, 'You should get tested'. And I thought, ‘I don't think I want people in Edinburgh to find out yet’, because it was quite a stigmatizing experience.

You wouldn't dare mention to anyone you had it. If you had it, people wouldn't shake hands with you, wouldn't drink from your cups, wouldn't use your lavatory seat. And if you collapsed, nobody would touch you. They wouldn't give you mouth to mouth resuscitation. I have a friend who was out walking his dog one day and met a pop star whom he knew to be HIV positive. He refused to let him touch his dog. The world was like that at the time. Which was why I felt I couldn't get tested in Edinburgh, because then everyone would know.

Ronald Raegan decided that everyone should get free anonymous testing so I thought I would take a little holiday to San Francisco. There I would get tested anonymously and for free. It was free at the time in Edinburgh, but it wasn't anonymous. So I went [to San Francisco] and they said ‘yes, you are quite right, you are positive.’

We must have anonymous HIV testing

When I came back I wrote to Norman Fowler, who was the Secretary of State for Health, and I said we must have anonymous HIV testing. I wrote to him anonymously, of course. And two weeks later in Parliament he stood up and he said, 'We need anonymous HIV testing'. I was really pleased with that! Anonymous testing was crucial.

A few months later I got tested in Edinburgh. I just thought, might as well, because it's going to happen. I got tested in February 1986 in Edinburgh. I told the consultant I had already been diagnosed, and I remember him asking me how they told me. He was obviously interested in the way other people were told about the fact that they were positive. How do you tell someone they are going to die? It is so much easier nowadays, you say, 'Don't worry, it's not a terminal disease, we've discovered it early, you're ok, we just need to make sure you get the right treatment'.

There was absolutely no treatment at the time. I told my consultant I didn't want to know my CD4 count. Just, please do not even consider it, because what's the point of knowing.

The first treatment had arrived

In the end my CD4 count went down to 200 and he told me, and at this point AZT had arrived. The first and only treatment at the time. So I went on AZT. As I understand it, it wasn't something that would improve your CD4 count, but it would keep it exactly where it was. On that basis, it worked for me, and it only worked for me because I'd gone on it at 200 which was an acceptable level, and I maintained that. I had to take AZT three times a day and I had some side effects, but I was on it until combination therapy came along.

Go get tested!

I don't understand why people these days don't get tested. It's anonymous, there's treatment available and far less stigma attached to it. When you get incredibly odd flu symptoms, go get tested! This is when you are most infectious. You can infect other people. Be responsible.

My life changed dramatically

I changed. When I was told I was positive, my reaction was "I'm going to fight this!" I have a strong character, and I wasn't going to let this beat me. I decided that I was going to do everything I wanted to do in my life. So I dumped the job, sold the house, started my own business. My consultant said I shouldn’t be doing any of this, but, you know, do what you want to do NOW! And now, 30 years later, this has become a problem - I have now done everything I wanted to do! But this aside, looking back, the diagnosis was a good thing for me, it kicked me into action.