`I thought I was going to die, but I was happy. For the first time ever I was free'

When Mark was diagnosed with HIV, he resolved to enjoy himself. Before long, like many sufferers, he was in serious debt. By Lulu Le Vay
Click to follow
The Independent Culture
MARK WAS 24 when he was diagnosed HIV positive in 1991. A bright Oxford University student who graduated with a First in Classics, he found himself in a well-paid PR job (which he loathed) in the City of London in the late Eighties. One Friday night in April, Mark went bed, exhausted, with a painfully sore throat. The next day he woke up with a temperature of 104. "It just wouldn't go away. At first I thought it was a bad case of flu. I had a niggling feeling in the back of my mind what it could be, but I ignored it."

Two weeks went by and there had been no improvement. While Mark was resting at home with his mother in Yorkshire, the local GP diagnosed pneumatic infection and pleurisy - classic symptoms of HIV. "I went for a test and I knew what the results would be. The only thing that went through my mind was, `Thank God I will never have to go back to that bloody job.' My sickness entitlement was generous, and I was on full pay for three months."

It was a beautiful summer that year, and Mark was determined to take full advantage of it. His health stabilised, and his company was offering huge redundancy payoffs. And that's when the spending started. "It was the only summer I had ever had off. I was scared, of course, I thought I was going to die... but I wasn't in denial. I was ridiculously happy, which I attributed to the fact that I didn't have to worry about work. For the first time in my life I was free. Everything I did was for genuine enjoyment; I got up at 10am, had a leisurely breakfast, went to the gym, met friends for lunch, went out for dinner - which progressed to weekend breaks in Europe and New York. I was haemorrhaging money."

After four months, Mark's sick-pay halved, and his newly-acquired indulgences meant he was spending a great deal more than he had coming in. His overdraft facility and his credit cards reached their limits. A letter from his bank asked him to "moderate" his spending - "which of course I had no intention of doing" - and the trips abroad, staying at five-star hotels continued. Then his redundancy cheque of pounds 14,000 turned up, which he used to pay off his debts, leaving him several thousand pounds to play with.

"I was being woefully irresponsible. It was when I returned from a trip to Madrid that I became conscious of things changing. I started displaying minor symptoms of HIV infection; tiny ulcers on my hands, rashes on my chest, and my mental health was suffering. I felt angry. I felt I hadn't done with my life what I had wanted to do. I had done the spending, but then the funds ran out. It was like a brief period of freedom, then BAM! I became clinically depressed; I suffered from anxiety and poor sleep. Spending money had been my anti-depressant."

By winter 1992, Mark was out of cash and his debts were around pounds 8,000. He was claiming sickness benefits of pounds 44 per week, and as well as receiving demands from the bank, he was finding it painfully hard to adjust to "normal" life. Then he contracted TB.

"I was extremely ill, and I wasn't prepared to take any shit from my bank, so I stopped making the token payments I had promised. I asked my doctor to draft a letter explaining my illness. Everything scary was put in there: `Aids', `six months to live'... I copied it and sent it out to the bank and credit card companies." The bank responded with a hand-written letter which read: "Dear Mark, I was so sorry to receive your letter. I have spoken to my manager and we have decided not to pursue your debt. Please don't hesitate to get in contact if you so wish. Yours, Angela." A week later the credit card companies followed suit.

"At the time Aids was considered a fatal illness and they were concerned with their PR," says Mark. "Having my debt cleared like that was a fluke, nothing like that would happen today. In 1995 I was put on combination therapy, and the results for me were very very good. It helped me get back into earning a salary and made me realise I did have some kind of future."

Maria was 22 when she was diagnosed in 1985. She was living in Barcelona with her husband, a heroin dealer, and they were both addicts. When their relationship collapsed, she was left without financial support, and no skills. Maria kicked her habit, and drew on her ex-husband's contacts to embark on a career trafficking cocaine. "First I travelled to Africa, then Thailand, Brazil and Canada. I was bringing ten kilos of cocaine into Europe on every trip, I would receive $10,000 per kilo, and I never stopped to think about the dangers - to me or other people. I was being selfish, I can see that now, but at the time I really thought I was going to die."

She travelled, staying in expensive hotels and living well - until she got caught at Sao Paulo airport in 1993. Maria was sentenced to four years in a Brazilian jail. When she developed a severe chest infection, she was transferred to the prison hospital, where women with HIV/Aids were sent to die. "I fell ill with TB, pneumonia, meningitis, I lost the sight in one eye. People were dying around me. It felt weird hearing the noise the trolley made when it came to collect the bodies. I hadn't planned to die this way."

With the help of Maria's campaigning, combination therapies were finally introduced at the prison in 1996. Her health improved, and she was released in 1997. She is now 37, lives in West London with her new partner, who is also infected with HIV, and despite bouts of illness, she has adjusted back into "everyday" life.

"Since 1994, British Aids death rates have fallen 73 per cent," says Dr Barry Evans of the UK Public Health Laboratory Service. "Combination therapy is not a cure or an easy answer, but the massive reduction in deaths has been great news."

There are growing numbers of people facing huge debts. "There has been a definite increase in the numbers of people seeking advice about money problems from the Terrence Higgins Trust over the past two years," says Cathy Kane, THT's welfare advice manager. "HIV is still a very serious illness which leaves many people too ill to work, and benefits are becoming increasingly hard for even sick people to obtain."

Survivors have to find a way forward. Maria now works for the prison where she was an inmate, translating reports of treatments for HIV and Aids. Mark has a new job. "People freak out about deadlines and are not enjoying their lives. It's as if I've been given a glimpse of what really matters."