Author: Communciations

I’m really not sure where to start this story, other than to say it is one that I never thought I would have to tell. Having said that, I don’t think anyone who has chosen to tell their story could have ever envisaged that HIV would be a part of their lives, so this is probably not a useful point at which to begin. What continues to encourage and inspire me are the incredibly diverse range of peoples and lived experience represented within the community of those living with HIV, of which I, as a positive heterosexual woman am one.

Let me start by saying that whilst HIV is a part of me and indeed has been for the past fifteen years, it does not in any shape or form define who I am. If I were to list a range of titles that encapsulate who I am, HIV would be way down that list after woman, daughter, sister, partner, student, etc. etc. Constructing one’s identity around an illness strikes me not only as immensely unhelpful, but in a way would only serve to empower the virus in every aspect of my life. That is not to say that I am in denial, or that my everyday decisions are not in some way positioned around HIV. I am most certainly aware of it and indeed it impacts on parts of my life that I would never have dreamed possible. But I believe it is important to locate HIV within a context, and for all intents and purposes to get on with living a ‘normal’ life, an adjective I personally object to for all the connotations implicit within it. The very notion of constructed normality can be quite dangerous in itself in that sometimes it serves to only highlight the stigma, discrimination and ignorance that exists around HIV, and contributes to push HIV out even further to the margins of society. Who is to say that living with HIV is any less ‘normal’ than living with cancer? While I would be the first to empathise with the need for secrecy and would strongly counsel positive people to be selective about to whom they disclose their status, I believe we need to start challenging the stereotypes about heterosexuals living with HIV and speak out about the illness. HIV does not discriminate, it can affect each and every one of us, and it is imperative that we correct the misconceptions surrounding the lives of those living with HIV or AIDS.

It can happen to anyone

My story is quite simple really, and I am living proof that it can happen to anyone. I met the man who was to become my husband and we used condoms initially, but he had a real issue with them and in fact we had several accidents at which point we both said rather prophetically in hindsight, ‘oh well, if it happens, it happens…’

It was not as though we were not aware of HIV, and although we both understood the risks in having a condom failure, I don’t honestly think either of us believed at the time that this would result in an HIV infection. Again, my husband’s reluctance to use condoms and his general uneasiness with them, should with the benefit of hindsight, have raised a red flag in my mind; but it didn’t. This was and is simply indicative of the marginality of HIV in heterosexual society. Sadly, although I was infected by my husband in the early 1990s, this is still the prevailing attitude today.

Disclosure to close friends whilst overwhelmingly supportive, has still almost always been accompanied by a sense of disbelief on their part that this could have happened to me. An issue I am passionate about is that we do not equip women with the knowledge and negotiation skills for safe sex. This does not only apply to young women whose understanding of safe sex might be limited to the avoidance of pregnancy, but also for older women who might be widowed or coming out of a long term relationship or divorce, for whom HIV is not even on the radar.

Overall, general assumptions within the wider heterosexual community centre on ‘heteronormative ideas about gender and sexuality’ and, as a result HIV is still lamentably typically stereotyped as a ‘gay men’s disease’.

A number of recent studies have shown that heterosexuals constitute a substantial proportion of late presenters with an AIDS diagnosis, and this has certainly been my experience. Some four months after living together, my husband became very ill with pneumonia-type symptoms for almost the entirety of an English winter, and then again unusually when it was warm (well, by English standards at any rate) in the summer. My memories to this day are of an exhausting, hacking cough the likes of which I had never heard or experienced before, whose symptoms worsened at night when lying down or trying to sleep. Nine months of countless chest x-rays, numerous visits to his GP and referrals to hospitals, did not result in the diagnosis of PCP (Pneumocystis carinii pneumonia – an AIDS defining opportunistic infection).

In fairness to the British National Health Service I just don’t think my husband fitted the stereotype they had of an AIDS patient, although by this time he had lost a considerable amount of weight and was very unwell indeed. It was only actually when he took himself off to a hospital that specialised in HIV/AIDS that the tests revealed the correct diagnosis. As a consequence, I was subsequently diagnosed as HIV positive a week later.

Secrecy and lies

Therein followed a construction of a life centred on secrecy and lies. My husband was admitted to a hospital ward that specialised in AIDS patients and other infectious illnesses. Even in England in the mid-1990s where the illness was considered more commonplace for want of a better expression, it was difficult for me as the then ‘girlfriend’ of a patient to gain access to the ward as we were not married at that point.

There was an implicit assumption that he must be gay, and I quickly realised that it would have been a lot easier had I been a relative in terms of being able to visit him. The combination of this, an unfavourable prognosis at the time as to his health and longevity and the belief that as an HIV positive person I had no other option, led us to decide to get married. Again, in hindsight this was for all the wrong reasons, but we both honestly believed that this was the only choice available to us.

My husband was so ashamed of having AIDS that he didn’t want to tell anyone and did not want me to tell anyone either. From the time of his hospitalisation, I invented an elaborate set of deceptions to cover my husband’s bouts of illness, our reasons for marrying, hospital appointments, medication schedules and side effects, and absences from the workplace. Persuasively we lived the lie, and we each had only one close friend in whom we could confide and rely on for support.

My husband’s guilt in infecting me meant he could not face my telling my parents or family which stretched my storytelling abilities to their maximum when we travelled twelve thousand miles from England to visit them, shortly after he left hospital. Arriving at the airport to meet his parents-in-law for the first time, we were detained by customs officials who, highly suspicious of my husband’s gaunt appearance and harbouring convictions that he was a drug addict, confiscated our passports and thoroughly searched our luggage. My performance all those years ago must have been so good that my mother, who was patiently waiting outside, says to this day she can no longer distinguish if I am lying or telling the truth!

Two years after marrying, my husband acquired another AIDS defining illness – CMV retinitis. He was still working at this stage and refused to go into hospital for what was then a daily intravenous infusion. The doctors agreed that under these circumstances I could conduct the procedure at home each evening, and placed a permanent catheter in his arm. Fortunately it was winter and my husband who was still very thin could wear a baggy sweater, and no-one was any the wiser.

However this meant concocting yet more stories as to why we both needed to leave work on time and were unable to attend work-related functions or socialise after work with colleagues. I have an extreme aversion to needles and this coupled with the knowledge that one air bubble in the intravenous drip can kill, meant that the nightly intravenous infusion effectively took up our entire evenings for a considerable period of time. 

A life not defined by HIV

When our marriage ended, it was very difficult to tell people of my status, as we had lied to them for over ten years. I had to and continue to have to think long and hard about whom I choose to tell and the reasons why I’m telling them because of the stigma, ignorance and prejudice that unfortunately still exists around HIV and people living with HIV.

I have had a new HIV negative partner for the past six years, but he is very conscious of transmission and fears becoming infected even though we practice safe sex. I have to confess that I find this attitude difficult at times and occasionally struggle to resist the idea of my having a ‘spoiled identity’. However my own self esteem and sense of self-worth does not and indeed should not revolve solely around my HIV status. I believe it is vitally important that as positive people we continue to embrace a multi-faceted life full of rich experiences.

I should stress at this point that my marriage did not end because of HIV specifically. It ended because my husband essentially gave up on life, and not only was I not prepared to stop living mine but I had, and still have a lot of things I want to do and goals to accomplish. Again, I would emphasise that HIV is a part of me and will not stop me from living my life to the best of my abilities, a life less ordinary, if you will. 

Perhaps by virtue of the fact that I have always seen an HIV specialist doctor, I have never experienced discrimination or prejudice within the health system. Historically, in the earlier years of the illness there may have been a perception of difference and that I didn’t conform to a stereotype when entering a clinic waiting room, but this has eased over time as the illness has unfortunately become more prevalent amongst heterosexuals, and I suspect I have become more comfortable with my coexistence with HIV.

As a positive woman, there was a perception that one fell into one of two categories – I was either an intravenous drug user or a sex worker. I remember being in a private hospital for four or five days for an operation unrelated to HIV, but for which I had obviously disclosed my status. In my interactions with the nurses, I could see them trying to gauge who I was as a person. On about the third day one of them plucked up the courage to ask how I had contracted the illness. Clearly they had not knowingly met an HIV positive woman before, and were surprised that I didn’t fit any of the commonly held stereotypes.

Breaking down the barriers of ignorance and prejudice

With the downgrading of the illness from ‘critical’ to ‘chronic’, and a belief amongst many that it is just simply a matter of taking a few pills, what concerns me greatly as a person living with HIV is the complacency that has been afforded to the illness by the general public. I believe it is incumbent on us as positive people, to do all we can to educate and inform people not only of the risks of contracting HIV, but what it truly means to live with the illness.

In conclusion, I am inspired by the words of a great South African, Desmond Tutu who said,

“first of all it is important to know that each one of us can make a contribution. Too frequently we think we have to do spectacular things, and yet if we remembered the sea is actually made up of drops of water, and each drop counts – each one of us can do our little bit where we are and it is those little bits that can come together and can almost overwhelm the world”.

This is my reason for speaking out as a positive woman in the hope that by contributing to the growing public voice of HIV we can not only break down the barriers of ignorance and prejudice that surround the illness, but contribute toward a better understanding of the social and cultural phenomenon that shapes how HIV is experienced and lived.

‘Mia’

Republished from Talkabout #160, December 2008-January 2009

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