HIV and relationships: facing a new realityadmin
HIV and relationships: facing a new reality
HIV Australia | Vol. 12 No. 1 | March 2014
By James May
James May speaks with three HIV-positive people in rural NSW. They share very different stories about their relationships with sexual partners, family and the HIV community.
Mark is a 51 year old Aboriginal man who lives in rural NSW. He’s been HIV-positive since 2007 and says that the diagnosis rocked his world.
‘I thought I was cactus until I realised that a HIV diagnosis doesn’t mean you’ll die of AIDS.’
He says it’s taken a few years to come to terms with being HIV-positive but that it’s made him take ownership of his health. Mark has given up smoking, drinking and drugs and is managing better than ever.
‘I don’t wanna be influenced by mind altering substances,’ he says. ‘I wanna live in my body and experience life.’
Mark is also diabetic and suffered a heart attack in 2005. He underwent open-heart surgery and says that these health challenges also helped him cope with the HIV diagnosis.
Mark doesn’t like to disclose his HIV status to many people, not even dear friends.
‘It’s a need to know basis except with sex partners,’ he says.
He is starting to surround himself with people he can be open with and steering clear of those he can’t.
‘I don’t wanna be on the receiving end of people’s insecurities. I’m already on the receiving end of it because I’m Aboriginal.’
Mark says he is still dealing with abandonment issues from childhood and finds it hard to deal with people judging or rejecting him.
‘I’m still coming to terms with the diagnosis and the ramifications of it. Maybe I’m still a bit ashamed. It makes me feel bad about myself sometimes.’
Mark tried a relationship with an HIV-negative guy but says it was very short-lived.
He prefers to get involved with other HIV-positive guys because it feels like they’re on equal ground.
‘The minute I disclose my HIV status to a negative partner I don’t see them for dust. I have some poz mates with an amazing sex life because they’re more comfortable with being poz. I still feel like I’m walking through a minefield.’
Mark doesn’t speak to the Indigenous community about his HIV status.
‘Being gay is not accepted,’ he says.
‘Being HIV-poz would blow their minds. You could have cancer or heart disease and that’s just part of the hard luck story of being a black fella, but being HIV-poz means you’re scum, lowlife.’
Mark doesn’t have much contact with his birth family either.
‘They couldn’t cope with my sexuality, let alone HIV. I came out a long time ago and they still haven’t come to terms with it. I have more of a spiritual and gay family now.’
Mark has always known about ACON and other HIV services. He doesn’t necessarily feel like he has much in common with people who use those services but he has gravitated towards more HIV-positive people since his diagnosis.
‘HIV services were useful, especially in the first few years. They put me in the loop and showed me how to access things. Now I’m on meds and my GP is sorted I don’t need so much contact.’
Mark explains that he wouldn’t feel comfortable disclosing his HIV status to Aboriginal heath organisations.
‘It could be socially damaging to disclose to an Aboriginal health body,’ he says.
‘I don’t trust where the information would end up.’ Mark says he’s been on a health, nutrition and emotional journey since his heart attack and that HIV has inspired him to stay on track too.
He is also a visual artist and this is something he loves dearly. ‘It’s a meditation and does powerful things for me. I will always paint. I do it for the emotional and spiritual place that it takes me and no drug will get me there.’
* Not his real name.
Darren lives in Northern NSW and was diagnosed HIV-positive 14 years ago, at the age of 20.
He was travelling through India at the time when he suffered a debilitating seroconversion illness.
Darren says the diagnosis was a big shock because he was so young and didn’t know much about HIV.
‘I had only come out in the previous few years and was still learning about safe sex and HIV. I only knew about it from people dying in the ‘80s and ‘90s.’
Darren was overwhelmed with shame, yet felt a sense of anger and injustice at contracting the virus so young.
‘I couldn’t believe it happened to me. I thought it was something that affected older generations.’
According to Darren, his relationship with family benefited in the long run as a result of the diagnosis.
‘It was rocky for a while but flowed much better when they offered their unconditional support. They had had huge expectations of me but they accepted that HIV meant we all had to face a new reality.’
Darren says that living with HIV has made him a more authentic person, especially with family.
‘HIV has motivated me in terms of life purpose, emotional development and spirituality. Everyone in the family has evolved more because of HIV.’
Darren says that his self-esteem suffered after the diagnosis even though he didn’t look any different.
‘I was in the prime of my sexual life but I didn’t have the confidence I might’ve otherwise had. I often felt unattractive and didn’t seek out many sexual partners.’
He says that HIV created insecurity around sex and relationships and he gravitated towards people who weren’t necessarily ideal. ‘I got involved with people who didn’t value me as much as was healthy for me.’
Darren says that he’s now had more sexual partners who are HIV-negative than positive and hasn’t faced much rejection over his HIV status.
However, he has experienced the underlying fear around HIV transmission that can arise in a serodiscordant relationship.
‘I’ve felt more sexually inhibited due to the fear of passing the virus on than I was about catching the virus.’
Darren is now in a relationship with a HIV-positive man and says there’s a mutual understanding of the way HIV impacts both of them physically, emotionally and spiritually.
He says it can be difficult for them to care for each other when their health is challenged at the same time though.
Darren didn’t really engage with the HIV sector till several years down the track when he got involved in peer support groups in Melbourne. He went on to work as a facilitator and says this was an empowering process.
‘I grew quite a bit and really came to terms with HIV.’ Darren then went onto being a Positive Speaker with Living Positive Victoria and says he enjoyed educating people in the broader community, particularly in schools.
‘I met people who had been living with HIV for a long time. It was the best peer support I could ever get.’
Darren is currently a volunteer counsellor with ACON Northern Rivers and says he might like to continue speaking in the medical system and aged care services.
‘Many of us are getting older and may need care in future so we need to raise awareness. There’s still a long way to go in terms of HIV stigma and I can always have a broader reaching voice. I feel confident and empowered with HIV. I honestly don’t care who knows my status anymore.’
Kate lives in rural NSW and was diagnosed HIV-positive in 1990. She had been in a relationship with a positive man for seven years at the time.
‘It was a terrible shock. I recall an incredible grief that I’d never have children.’
Kate’s partner was always healthy and she says they thought he wouldn’t succumb to the virus.
‘My partner never had regular T-cell check-ups because he seemed so well.’
Kate says the physicians they saw at the time of her diagnosis were informative but it was early days.
‘They had a lot of fear which was understandable but it turned us off engaging with them. We thought they were being hysterical. Looking back, we were ignorant,’ Kate says.
‘We were very well, but didn’t know the effects of the virus might not show up till years later.’
Kate’s partner died in 1994. She says his death made her live life more fully.
‘The more aware we are of the impermanence of life the more alive we can be.’
Kate says that when she first tells a man she’s HIV-positive they usually say they’ve never known someone with HIV.
‘They’re straight – it’s a different world. Some have been open to me educating them and trust me completely. Some have more doubts.’
Kate insisted on using condoms but says that the men wanted to dispense with them down the track.
‘I was insistent because I’d hate to pass the virus on,’ she says.
Kate is glad that it’s less of an issue these days with the efficacy of medications and the fact that many HIV-positive people are treatment compliant and have undetectable viral loads.
Kate didn’t tell her family about her HIV status until her partner became very unwell. She says they were always supportive though and it’s become a non-issue as they’ve grown older and faced their own health problems.
‘I grew up in a theatrical family. They were used to gay men and always open-minded.’
Kate believes that HIV service providers do the best they can with the resources they have and that they’re very committed people.
The men she encounters in the HIV community are very accepting of her, but she says that HIV-positive women are harder to reach.
‘I’d like to see more women at social outings and treatment events. Some women are just getting on with their lives but there’s a high percentage who have a lot of fear around being known as positive. I’m concerned they may be missing out on emotional and financial support if needed, and being kept informed about medical advances.’
Kate says that HIV has given her more insight about her own health issues and the health of society in general. She has always been conscious of good nutrition and alternative medicine.
‘Managing HIV has made me more appreciative of allopathic medicine too.’
She now uses a combination of both and invests heavily in vitamins and supplements which are vital, she says.
Kate feels pretty good with HIV these days.
‘I’m glad that we have good access to HAART (highly active antiretroviral therapy). We’re better off than most people in the world in that sense. But I am aware of the side effects on my body which aren’t always comfortable. Also, I’m concerned that with the new government, people in need may be less able to access support.’
HIV has never undermined Kate’s self-esteem but she is more conscious when she meets a new person in the medical arena.
‘In my experience, some clinical staff who have little experience of HIV have tended to be insensitive – more so than people in general. Prejudice can have a stronger impact when it’s not spoken. I can’t deal with people’s fear if we can’t talk it out. If we can’t talk it out it’s their problem.’
Everyone’s experience of living with HIV is unique. The way a person reacts to a positive diagnosis, how they come to terms with HIV and their relationships with significant others is varied.
The diagnosis was a difficult time for the participants interviewed for this article. Yet they took control of their health and thrived while living with HIV.
Some had felt that their self-esteem was undermined but are overcoming this.
Healthy, supportive relationships with friends and family are very beneficial, as are strong relationships with other HIV-positive people.
These participants have faced their fears around negotiating safe sex and disclosure – and some have had very encouraging experiences with HIV-negative partners.
It’s likely that on-going public education and the efficacy of medication is contributing to this, as well as people’s own determination to be open and honest.
There is no doubt that living with HIV still presents many challenges. However, these people have shown that a HIV diagnosis can produce a better quality of life and stronger, healthier relationships.
James May is a freelance writer from NSW who regularly contributes to the HIV sector. His articles have appeared in HIV Australia and Positive Living.