If you’re a woman with HIV in Australia, it’s easy to feel a bit invisible. There are currently around 2700 HIV positive women in Australia, making up about 10% of the total number of people infected. However the HIV epidemic here really began among men who have sex with men, and they continue to make up the majority of the positive population, so it’s not surprising that most peer support and patient information is aimed at this group, and delivered by organizations who have their roots in the LGBT community.
There are many challenges when you’re HIV positive, and some are universal regardless of gender and sexual orientation – at the top of the list is stigma and societal ignorance of what it means to have HIV.
Education programs have been fantastic at giving the gay community up-to-date information about HIV, and many gay men will be aware that HIV is now a manageable condition, that treatments are now simple and non-toxic, and most importantly that once someone is on treatment and their viral load is undetectable, they are no longer able to transmit the virus through sex, the so-called U=U message – undetectable equals untransmittable. Although many men are still unaware of this message, it is certainly now being promoted frequently through gay media. Add to this the fact that many sexually active gay men will now be on PrEP which protects them against HIV, so there is the potential for greater acceptance and less stigma – whether this is actually what is happening in the real world is another question, and I believe there still needs to be a lot of work on educating guys about this.
However over in hetero world this same message has not really filtered through much at all. Anyone who was old enough to watch a telly back in the early 80’s would be hard pressed not to remember the now infamous “Grim Reaper” ads, which were designed with the public interest in mind to convince people to use condoms to avoid catching HIV. These ads unfortunately had the effect of instilling terror into the minds of viewers, which, rather than protecting those at most risk, simply stigmatized them dreadfully. Given there has been no proper campaign to re-educate the average heterosexual “man on the street” about the advances in HIV treatment, and the reality of treatment as prevention, it’s not surprising that the attitudes of many in the straight world have not really advanced much since the grim reaper days.
This can make life very difficult for the single HIV positive woman. If she’s going out on a first date, does she disclose beforehand? After dinner? After a few drinks? Does she wait until after the first kiss? Is her fear of disclosure going to make her too nervous to even get close physically? This fear can turn what should be an exciting and beautiful experience into one filled with uncertainty and stress.
Picture this – a woman goes out on a date with a guy, and at some point discloses her status to him. Their date doesn’t lead to a relationship, but she later discovers he’s told not just his friends but also random strangers in a club that she is positive. Of course we would all agree that it is disgusting behaviour to publicly reveal this kind of private information, and no doubt many who heard him were appalled. But no one could unhear what he had said. And without good community education around what it really means to be HIV positive and on treatment, positive women are going to continue to come up against this kind of attitude.
How can this young woman feel safe disclosing to a potential partner in the future? It breaks my heart to see a beautiful young person who has so much to give, whose aspirations are reasonable ordinary things like wanting a loving partner and perhaps a baby or two, being crushed again and again by ignorant and fearful reactions.
These are the facts:
- a positive woman who is on treatment and has an undetectable viral load will not pass on the virus to her sexual partner
- a positive woman can become pregnant and have a normal birth, with virtually zero chance of passing the virus on to her baby, if she is on treatment
- a positive woman on treatment will have a normal life span and will not become sick due to HIV
We now have every major medical association around the world sending out the same official message – U=U.
Now that we have agreement from the medical establishment about this, it’s time the wider community received the message!
As I mentioned, health promotion for HIV positive people has traditionally been aimed at a male audience. Women need different information, specifically covering topics such as contraception, pregnancy and childbirth, breastfeeding, menopause, female-specific cancers and other health issues. Here’s a summary of some of the important issues:
- some contraceptives will have their effectiveness reduced by some HIV medication
- HIV+ women are more likely to develop cervical cancer, so need their screening tests more often
- menopause may occur early, and HRT can interact with some HIV meds, but there are good options available to treat the symptoms of menopause so ask your doctor
- there is an increased risk of osteoporosis so regular bone density tests should be done, and your calcium and vitamin D intake needs to be good
- some other cancers are more common, such as anal cancer and lung cancer, so any unusual symptoms should always be discussed with your doctor
For positive women, support groups can be invaluable. Most HIV positive men will know other positive guys, often through support groups, but it’s harder for positive women to meet because they are far fewer in number and don’t have a social “scene” that draws them together. Shared experience is important and empowering, so I strongly recommend connecting with one of these groups.
For more information on health and support visit
And to read about some positive women’s stories, this is quite a nice magazine article: