Author: Communciations

After I was diagnosed with HIV, my husband also received his own diagnosis. He was so ashamed and felt such guilt that he would not let me tell anyone of our joint diagnoses, and therein followed the longest ten years of my life, a life constructed around secrecy and lies. I created an entirely fabricated world in which we, for all intents and purposes, led a normal life. This was also problematic. I wasn’t able to tell my family at the time, a decision I regret to this day. I also missed not being able to confide in other friends, and I realise that this decision made me put off dealing with my diagnosis, confronting the everyday reality of it, and its long-term implications. I didn’t deal with these until years later.

‘Later’ occurred ten years afterward when our marriage ended, when I felt free to tell others of my status. Opening up to good friends was extraordinarily cathartic, but also very difficult as I had effectively lied to them for that period of time. There was also the issue that they would reject me because of the stigma, ignorance and prejudice that unfortunately still exists around HIV and people living with HIV (PLHIV). I am fortunate that family and close friends I disclosed to have been extraordinarily supportive. I believe, it is this understanding that led to my gradual acknowledgement and acceptance of HIV in my life, although I would be the first to say while it is a part of me, it certainly doesn’t define me.

After having lived a life where I effectively avoided HIV or anything to do with it, I progressively started to become more engaged with the HIV community as a whole, and have been privileged to meet some extraordinary individuals who share my journey. One of the reasons I decided to become involved was the desire to give something back. I think the writer Isabel Allende sums it up best when she says, “the whole point of being alive is being part of a chain, of a community, and what you do for others is what matters.” I had effectively put my life on hold over the best part of ten years since my diagnosis. I had been simply existing and not truly living while I waited for my husband in the very late stages with two AIDS-defining illness to die. When he didn’t die, thanks in part to the advances in HIV medication, I was forced to re-examine my own existence.

I realised that my identity as a woman living with HIV (WLHIV) placed me in a unique position as a peer to support and advocate for others. I trained as a positive speaker because I wanted to raise awareness around the lived experience of HIV in the wider community. In Australia, WLHIV are regarded somewhat as a minority within a minority, so it is important that our perspectives are valued and given due consideration in the HIV response including at the national level in the design and implementation of policies and programmes.

My other reason for becoming more engaged with the HIV community was around the area of human rights. PLHIV are entitled to the same rights as everyone else, and the protection and realisation of these human rights has been recognised to be essential to an effective public health response to HIV. Our HIV-related human rights include our human rights as articulated by the United Nations, as well as encompassing our right to be free of stigma and discrimination. Human rights advocacy impact WLHIV concerns around privacy, gender equity, sexuality, access to medication and appropriate services, travel and employment restrictions, amongst others, and promote a strong public health response especially for WLHIV.

WLHIV have a right to self-determination and participation in decision-making processes that affect our lives, and a successful rights-based response to HIV prevention requires the involvement of all PLHIV. If Australia is to achieve the goal of eliminating HIV transmission, we must include and respect the voices of all people living with HIV.

As PLHIV, we have led the advances of the past thirty or so years of the HIV epidemic. Our challenge for 2019 and beyond is to continue to build on our achievements and successes, honour and respect the past, and to continue to advocate around issues that affect all people living with HIV including women.


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