‘So, what’s the big deal about having HIV?’ This is what a friend asked David Menadue, recently.
‘You look okay. It’s a manageable condition, now,’ he said. ‘Sometimes I think you guys make too much fuss about it all.’
This is what my 35 year-old friend Troy said to me the other day. How do I respond to this sort of thing? How do we counter the growing perception among HIV negative guys that getting HIV is not something to worry about?
Most of us know people who have gone through hell and back when they were newly-diagnosed. But apparently, their experience is not enough of a warning to persuade people like Troy to avoid HIV and to regularly use condoms.
Perhaps it’s understandable. People probably look at our outward appearances these days and think our lives are rosy and uncomplicated. They don’t see the gaunt faces, skinny arms and legs and other telltale signs so much anymore. And many of us have been doing well with very few health problems for many years.
I decided to ask four positive people, with a range of years’ experiences living with the virusA small infective organism which is incapable of reproducing outside a host cell. what they feel about the statement that having HIV is no big deal, anymore.
Phil. Years living with HIV: 4
A recent partner who had contracted Chlamydia suggested Phil might want to get himself checked out. He was on holiday in Sydney at the time so he went to a local GP practice and they did an array of tests including HIV.
Phil wasn’t all that surprised when he received his HIV diagnosis. He had been having quite a lot of unprotected sex so it was a bit of a reality check to be finally given the news. But he believes that it was all handled badly. The GP informed him he was HIV positive with no pre- or post-test counselling and referred him on to a local hospital.
He was staying with his family at the time and got mixed support from his brothers when he told them.
‘I still can’t bring myself to tell my parents,’ he says.
He found it hard telling previous partners; some of whom he cared about very deeply. His most recent partner proved to be very supportive, while another said that it ruled out any possibility of them having a relationship in the future as he had no intention of having a boyfriend with HIV.
‘It has closed a lot of doors relationship-wise,’ says Phil, acknowledging that this aspect of being HIV positive has been the biggest reality check.
‘If you think about it,’ he says, ‘the odds of finding a partner out of the one in ten men who are supposedly gay are small anyway. And to then try and find one who is willing to accept your HIV status really limits your choices.’
PhiI did what a lot of newly-diagnosed guys do when they find they’re not coping with being positive. He started regularly using recreational drugs. At first they seemed to help him relax and made it easier to tell others about his status. He always tries to disclose to partners but often finds it difficult.
‘If you don’t do it on the first date, when do you do it?’ he asks me. In the first week, the first month or never?
Phil had this need to disclose drummed into him by a social worker in New South Wales, where it is law to reveal your status before you have sex. However, a close friend who lost a lot of friends to HIV advised him not to disclose because of the potential for discrimination.
He struggled with the dilemma but decided that he must disclose because it feels right and besides he has always liked being straight with people. He’s changed his status to positive on internet dating sites and while he doesn’t get as many hits, he finds the ones he does get are more genuine and interesting anyway.
When Phil’s drug use started to affect his health and his work, he sought counselling and has found that changing his riskier lifestyle has reduced his stress levels. He has also started to speak to other gay men through various peer support programs.
‘I don’t live with regret but I do look longingly back at the time before I was positive and wish I had made a few different choices.’
‘I tell them that having HIV is a lot more than just taking a few pills each day. It affects your relationships, your physical health and your mental health.'
Meg. Years living with HIV: 10
Meg is an exceptionally fit and healthy 44-year-old. She takes three pills in the morning and only needs to see an HIV specialist once every six months to get her scripts renewed.
HIV is not something she thinks about much at all. The impact of it on her life is minimal. But this wasn’t always the case. When she was diagnosed ten years ago, Meg had been in a year-long relationship with a man who had left his marriage just before they met.
‘I developed a lot of bone pain and became very unwell,’ she told me.
Her doctor diagnosed cytomegalovirus (CMV), but when she looked it up on the Net, she kept being referred to HIV sites.
‘I told my doctor it couldn’t be that but to check anyway,’ she said.
The day she found out coincided with her niece’s first birthday party. Everyone in her family was so jolly, she felt she couldn’t ruin the mood and tell them. Besides, her father was an Anglican priest and she didn’t want either of her parents to know that she had been sexually active.
Meg felt an overwhelming sense that she had lost her innocence. She believes she took on the negative stigma that people often associate with HIV: sex, disease and death.
‘I didn’t know what to expect from other people if I told them,’ says Meg. ‘I felt so isolated for such a long time.’
She didn’t know what to think about her future health or life expectancy. Her GP proved to be pretty hopeless as he hadn’t diagnosed anyone with HIV before. Already dealing with chronic fatigue syndrome, the HIV only made her symptoms worse.
Slowly, Meg began to manage her chronic fatigue syndrome and got her HIV successfully treated at the Melbourne Sexual Health Centre. The doctors there were much more knowledgeable and she received counselling to help her adjust to her diagnosis. She also discovered the PLWHAPerson (or People) Living with HIV/AIDS. Victoria Speakers Bureau which helped her enormously.
‘Talking to others about HIV has helped me break down my own stigma about being HIV positive,’ she confesses.
‘For a long time, I could see no upside to having the virus. Then I found that I could improve other people’s knowledge and awareness.’
Meg is not having a sexual relationship at the moment but knows that when she does, it will mean having to tell her partner about her status.
She still wonders about her future but tries not to think about it too much and simply gets on with her life.
Sandy. Years living with HIV: 17
When Sandy was diagnosed with HIV in 1994, she couldn’t believe that her husband may have cheated on her.
’He was so jealous of me around other men,’ she says.
When she told him about her diagnosis, he assured her that it must be her fault and so she flashed back to years before when she’d helped some guy with a cut on his foot.
‘But I’d had two children since then,’ she reveals. Luckily, neither of them tested positive.
Sandy had no one to tell or get support from. She was fortunate to have been referred to a specialist who had worked previously at Fairfield Hospital and who knew a lot about HIV. He told her to take off her rose-coloured glasses and face the fact that she must have contracted HIV from her partner.
Sandy remembered a time she had found a condom pack from a Melbourne club. She rang them up and found out they were a gay sex-on-premises venue and confronted her husband about it.
‘He came up with a good excuse about meeting someone to collect a debt and I didn’t think any more about it,’ she recalls.
Sandy’s life filled with turmoil as she struggled to come to terms with her prognosis, what it might mean for the care of her children and dealing with an increasingly problematic relationship with her partner. The stress began to take a toll on her health and she suffered a form of mental breakdown.
She then went through a highly traumatic time in hospital where she nearly died from an opportunistic infection. She also developed resistanceHIV which has mutated and is less susceptible to the effects of one or more anti-HIV drugs is said to be resistant. to the antiretroviralsA medication or other substance which is active against retroviruses such as HIV. she had been on since her diagnosis and was left with very few treatment options.
‘The doctors said they didn’t know if I could cope with the toxic side-effects but I persevered and somehow, survived a truly awful time,’ she relates.
Sandy believes that it doesn’t matter when you were diagnosed ̶ twenty years ago or just yesterday ̶ it will always have a devastating effect on your life.
Today she works as a peer support worker with Straight Arrows, an organisation for heterosexuals with HIV, and sees people with new diagnoses all the time.
It’s the ripple effect of a diagnosis, she believes, that takes its toll. Even if it doesn’t affect you straight away, over time it adds an element of uncertainty in your life as you disclose to friends, family, sexual partners, health care workers, employers.
‘We all know it takes a toll on your body from day one and is much worse the older you get,’ she says.
‘If you care about yourself, you don’t want this virus.’
Max. Years living with HIV: 25
HIV has put Max through the mill over the years. He lost a partner and numerous friends to the virus, lived through several AIDS-defining illnesses in the late eighties and early nineties and survived years of inadequate and toxic treatment regimens to get where he is today.
‘One of the worst things I had to go through was anal cancer,’ he admits. ‘I could have died from it.’
He underwent radiotherapy, highly invasive surgery and years of meticulous self-care, but today he appears to be cancer free.
‘It still affects my everyday life in some ways,’ he says.
Max believes that there are few good things about being HIV positive. His experience living with it has made him more resilient and he is determined to understand as much as he can about the condition in order to minimise the chance of any future problems.
His period of personal growth began eleven years ago when he joined the HIV sector and he now coordinates the Positive Speakers Bureau for PLWHA Victoria, a job he finds very fulfilling. He believes that speaking about your own experiences can help you feel confident, overcomes stigma and help others to make safer decisions in their sexual lives.
‘I am perplexed by some of the conversations I have had with younger negative gay men,’ he says.
Max finds that many of them think it is safe to have unprotected sex with positive guys. They use the Swiss Statement to argue that the risks are very small if your partner has an undetectable viral loadA measurement of the quantity of HIV RNA in the blood. Viral load blood test results are expressed as the number of copies (of HIV) per milliliter of blood plasma.. He counters that there are conditions attached to the statement.
‘ How can you know that your partner is undetectable at any particular moment?’ he asks them.
They may not be 100% adherent to their medications or they may have picked up an STI, both of which greatly increase viral load. Who sits down and interviews someone before you have sex to even know if their treatments are effective?
To people who claim they don’t really care if they do become HIV positive, Max challenges them to think about the uncertainty it will bring into their life.
‘Not only will you have to deal with unexpected negative responses from people, you are likely to be involved in medical care for the rest of your life,’ he warns them.
‘Ten to fifteen percent don’t do well on the treatments and there are side-effects attached to many of them. Try to think about what your life might be like a few years down the track,’ continues Max.
‘Those of us who have lived with it for years know what damage it can do to your body and how quickly it accelerates the ageing process.
And there will be no cure for a long time yet.’
I hope my friend Troy (and others like him) read these stories and appreciate how much we don’t want others to become HIV positive.
Like it or not, getting HIV is still a big deal.