'I was in a women's refuge and knew my baby could potentially have HIV' - mother who contracted virus from her boyfriend
Liz Martin (49), originally from Dublin’s Liberties, contracted the HIV virus from her boyfriend, who she’d been seeing since she was a teenager. She discovered he was taking heroin in the early 80s, soon after becoming pregnant with their first child.
“There was a lot of misunderstanding about it back then,” she tells me. “Rock Hudson had it. Freddy Mercury. Not people like us. Since he never had any sign of the illness, he ignored it. And so did I.”
Diagnosed in 1991, when she had moved to a woman’s refuge in Galway, Liz says the hardest issue she faced was having her children tested. “I couldn’t face it. The thought that I could have transmitted it to them.
“The first three children came back negative. But I needed to get my head into the place where I could deal with the potential positive diagnosis for the baby, so I had to wait a while to have that strength. The test came back negative, but the wait seemed like a lifetime.”
Those of us who grew up in the 1980s remember fear-mongering ads, with poisonous insects and collapsing tombstones, that may have bred stigma against HIV but also bred some sort of awareness.
Millenials have had no such education. A survey of the general population, undertaken by HIV Ireland this year, uncovered some worrying findings. Twenty percent of 18-to-24-year olds incorrectly thought HIV could be passed through the sharing of a public toilet seat, 24pc believed HIV could be transmitted by kissing, while 11pc incorrectly thought it could be transmitted through coughing or sneezing.
Only 19pc of respondents reported correctly that the risk of someone who is taking effective HIV treatment passing it on through sex is extremely low, while 10pc of people stated that they wouldn’t feel comfortable working with a colleague who was HIV positive.
Such stigma is bred from fear, which in turn tends to come from lack of information.
“I didn’t know HIV existed when I was diagnosed,” Robbie Lawlor (26), from Clondalkin, a HIV advocate and a former Mr Gay Ireland, tells me, “and I had a science degree. I had seen the words, ‘HIV’ and ‘AIDS’, but I didn’t know the difference.”
Robbie was born in 1991; Antiretroviral Therapy (ART) came on the scene in 1996. Once effective medications came into place, the national sense of urgency surrounding the treatment of HIV appeared to decrease.
“The only sex education I received related to how women got their periods,” recalls Robbie.
The 2010 Irish Contraception and Crisis Pregnancy Study found that while 60pc of adults surveyed had received some form of sex education, it was all around the mechanics of heterosexual sex. Only half of 26-35-year-olds had received any information on safe sex, while less than a third had been taught anything about homosexuality.
“Instead of bemoaning the perceived complacency of these young people,” asserts Elena Vaughan, a doctoral candidate in the Discipline of Health Promotion at NUI Galway, “maybe we should ask why, after 12 to 15 years of formal education, do they know so little about a disease they are disproportionately affected by.”
Conversely, children may need to start having similar conversations with their recently widowed or separated parents who, returning to a dating scene for the first time since they were teenagers, may be just as clueless to the risks they are exposed to. Ten percent of all new HIV transmission last year were among the over 50s.
“For women my age, who might be getting back out there and wouldn’t be having babies, condoms might not be something they think about, “ says Deirdre D’arcy* (55, not her real name*), who was diagnosed in Manchester 15 years ago.
“You just start falling into the way you were dating when you were 17. Back then, the fear was all about getting pregnant. But now you can’t get pregnant, so you might think, ‘Let’s just go for it’. The threat of HIV just isn’t present for them.”
Following a split with the father of her two children, Deirdre was getting herself ‘back out there’ when she decided, just to be safe, she’d get an STI test.
“The HIV part was just an afterthought. When they asked me if I wanted it included I thought ‘You might as well’.”
While the rest of the tests were negative, the HIV test was not.
“All I could think about was your man on EastEnders, who died from it. I thought: that same thing is going to happen to me.”
Isolated, with no family in England, she told one friend, who promptly blabbed, while the partner she was with at the time, ran for the hills.
“I deliberately went out with guys I couldn’t have a future with. I thought I had spoilt the hopes of a nice relationship for myself. So I just went out with people I wouldn’t have to divulge my diagnosis to and used condoms.”
When Deirdre returned to Ireland, she went to the Sexual Health Centre in Cork, where she started receiving counselling. While she says she hasn’t had any negative reactions from her friends and family here, counselling has helped her with her self-stigmatisation.
“I had my first grandchild last year and I got totally worked up in my own head that my daughter-in-law didn’t want me to be in my grandson’s life because of a risk I knew I didn’t pose. But the counsellor helped me see what I already knew and things are great there now”.
According to HIV Ireland, anticipated stigma is more frequent than experienced stigma, and can have a significant negative impact on an individual’s sense of safety and wellbeing. The stress that stigma can cause may explain why, in the past year, almost one in five people living with HIV have felt suicidal. More than a third also reported as having suffered from low self-esteem, anger, felt guilt or shame, and blamed themselves for their HIV status.
“When I talk to people about HIV, they often recoil,” says Dr Aisling Loy of the Himerus Health Clinic. “The truth is, were I to tell them they had diabetes, it would be worse. You have to inject yourself several times a day. Your life expectancy is shorter. Get diagnosed early enough with HIV, it’s one tablet, taken daily, with very little side effects and normal life expectancy.”
According to the doctor, for some people, getting diagnosed with HIV can have a type of positive impact on their health.
“They suffer a posttraumatic growth,” says Dr Loy. “A lot of people change their lifestyle, become a lot more conscious of their fitness and diet and have meetings with their consultants every couple of months, so they know they are STI free.”
Yet, 54pc of people with HIV who responded to the HIV Ireland survey said they were single.
“When the ironic thing is that you’re the safest person to have a relationship with,” says Dr Loy. “It’s really nice, a year or two later, for them to realise this and come in to see me with their new partner.”
According to the World Health Organization, 30pc of those who have HIV don’t yet know it.
“It’s the head in the sand phenomenon,” says Dr Loy. “They would rather not know due to the stigma. There’s always something else to be doing, and people put it off. You don’t want bad news before a wedding, etc. But a late diagnosis doesn’t do your health any good”
“The earlier you are diagnosed, the less chance the virus has of damaging your immune system, or depleting it,” says Dr Loy.
“Going on treatment makes your viral load undetectable and gives you an immune system comparable to a healthy person. Prescribed drugs will keep it at that level. However, the later that you are diagnosed, the harder it is to get to that point. ”
The rate of diagnosis of HIV in Ireland is higher now than it ever was.
Men who had sex with men (MSMs) counted for 51.4pc of diagnoses — part of which can be explained by the heightened awareness among that community, meaning they are more likely to have been tested in the past 12 months.
Meanwhile, 42pc of the group had previously been diagnosed abroad and were transferring their care to Ireland, 87pc of whom had been born abroad.
QUESTIONS TO ASK AROUND DISCLOSING HIV
- Are you aware that you are under no legal obligation to reveal your HIV+ status? Be comfortable with your status and with the fact that, while most people respond positively, it may take some longer than others to come round.
- Is now an appropriate time to make this revelation?
- Are YOU informed about having HIV? The more knowledge you have, the better chance those you are disclosing to have of seeing that being diagnosed with HIV is the same as being diagnosed with any other chronic illness.
- There is still stigma surrounding HIV. How will you handle facing this prejudice head on?
- If you know your biological family aren’t going to accept it, have you got a logical family of friends who will support you through the fall out, or in whom you can confide?
HOW TO RESPOND WHEN SOMEONE TELLS YOU THEY ARE HIV+
- Don’t be nosy: it’s none of your business how they got it.
- Don’t be presumptive: coming out as HIV+ does not mean they are coming out of the closet or as an intravenous drug user.
- Don’t be ignorant: you can’t get HIV off a toilet seat, a door handle, a shared beverage, or kissing. If you have concerns, save them for your doctor or a Google search.
- Don’t be a d**k: now is not the time to judge some one on their past sexual or social behavior. Neither is later.
- Don’t use foul language online: you are no more ‘clean’, than they are ‘dirty’. The young gay man is as ‘innocent’ as the older haemophiliac.
- Don’t blab: a person’s status is his or her own business. It’s not your place to reveal it to others no matter how pure your motives.
- Be curious: ask about their treatment.
- Be considerate: ask how you can help.
- Be compassionate: reassure them they are not alone and that this revelation will not affect your relationship.
- Be clued in: do some research so that you can engage in conversation with your friend/family member.