As Aids Day approaches Linda Reed tells Anne Dempsey she is determined young people are made aware.
Tall, slim and tanned, Linda Reed looks the picture of health. Yet an hour into our meeting, she has to call a halt and reschedule as she is exhausted. Aged 44, she has HIV, coinfected with hepatitis C.
"Main side effects are fatigue, joint, muscle pain and sleeping problems. Everything is an effort and it was a big effort to be here today. But things are immeasurably better than they were in 1989 when I was given three years to live, and you lived waiting to die."
June 15, is Irish Aids Day, which this year aims to raise awareness around the sexual health of young people. It's a timely emphasis given that at least one person in Ireland now tests positive every day. Almost one in two of those infected is under 30, with two thirds of all sexually transmitted infections, (STIs) now occurring in this age group.
Among other initiatives, Dublin Aids Alliance calls on the government to put sexual health on the political agenda, while making condoms freely available where young people congregate.
Awareness of risky behaviour was very different in the 1970s when Reed was a teenager in Blackrock, Co Dublin.
"I began experimenting with cannabis when still at school. I said I would not go on to anything else, but progressed to speed and heroin. I said I would only smoke heroin, never inject but I did. I got my Leaving Certificate and had career ambitions to be a vet, but already drugs were my main focus.
"I took part-time jobs and by 19 was using heavily and selling drugs to friends to pay for my own. I did have a rule never to introduce anyone to drugs, selling only to those already using and for their use only."
Her daughter was born was she was 23, and her son two years later. Their father was also a drug user, and when the children were tiny, the couple fled to Germany to avoid police harassment here.
"Life was horrible. You woke up needing a hit, and then you had to go out and find money for the next hit so as to feel, I won't say normal, but functioning.
"If you couldn't get your drug, you had physical withdrawals, vomiting, shaking, incredible pain, but the psychological withdrawal was worse, feeling that you needed the drug, that you could not manage without it. One of my greatest regrets would have been the fact that I neglected my children badly from time to time when they were small."
In June and September 1988 Reed tested clear for HIV. Five months later a third test showed up HIV positive. As she had not been sharing needles in the intervening time, but did have unprotected sex, she believes she contracted the virus through sexual contact.
Over the next two years she became very ill, in bed for most of the day. Then came the arrival of AZT, hailed as the new wonder cure for AIDS. Still valuable canon in the arsenal, it is used today in combination with other retroviral drugs.
"Because I was prescribed AZT on its own, my therapy options are limited. I have resistance to 18 of 20 available drugs, and those I take produce serious side effects. I suffer from dry skin, nausea, damage to nerve endings in hands and feet, and unhealthy redistribution of body fat. I go off medication for periods to feel better, but when my immune system weakens and the viral load - the amount of virus in my body - shoots up I must resume the regime. It's a balancing trick
"Today while the focus in the western world is on reducing the toxic side effects of medication, we must see it in perspective. Nine out 10 with HIV in the developing world have no access to treatment. Here at least we have options."
Returning to Ireland in 1994, she became clean of heroin and has remained so, receiving low-level methadone maintenance from her GP.
She lived apart from her children for some years, while seeing them regularly and when they returned to her as teenagers, they learnt, because they asked, that she was HIV positive.
The knowledge, she says, bound the family unit closer. When her son and daughter left recently to set up their own homes, she was sorry to see them go.
"I felt we needed longer together. People have said over time what chance could they have when we were addicts. My own life learning has taught me that kids need two things from parents - communication and compromise. I gave them access to age-appropriate information, I let them know they could talk to me and was prepared to meet them where they were at. They have done very well and I am proud of them."
Today she keep herself well with Buddhist meditation, reiki treatments and acupuncture, testifying to this development of her emotional and spiritual self in reducing symptoms and side effects. For over a decade she has worked to raise awareness around HIV, founding, through Dublin's Aids Alliance, the city's first HIV women's support group. Part of her work is talking to young people in schools.
"In some ways, nothing has changed. When you ask a group of sixth year girls what their greatest fear is around unprotected sex, nine out of 10 say pregnancy. They still don't think about infection or HIV.
"We need to give young people the language to manage their relationships responsibly. When I was at school, I was outwardly confident, but inside far less secure. Kids ask me how I felt on drugs, and I tell them, drugs stop you feeling. As a teenager, I could walk up to the bar, order a drink, and it didn't matter to me what I was wearing, how I looked, what the boys thought of me, drugs numb you, and stop you feeling.
"So it's not enough to tell kids just to say 'no'. We need much more of an understanding of why they use drugs, why they risk unprotected sex, and we need to give them skills around all these areas.
"Access is another issue. Condoms cost from €10 to €16 per dozen, if a lad has €10 going out for the night and the choice between spending it on cans or condoms, you know which he will choose. In terms of a strategy around young people's health, we don't need to invent the wheel, we need to enforce existing policies rather than paying lip service to them. This means looking at ways of getting the message across that really work, it's the 'how' of it.
"I would be advocating drama, visual imagery, and above all, peer education. Training young people to educate each other works.
"We also need a new national sexual health awareness campaign not just messages on a toilet door and a big hoohah around days like this.
"I'm still an activist because there is still a prejudice around HIV. In the early days, my biggest fear was not of dying, but how I was treated when people knew about me. I never want my children to be ashamed of me when I die. Whatever I have done or may have done, whatever my lifestyle was, I am still someone's daughter, someone's mother. We need to see the person behind the illness."