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The story of Susanna, published in this month Positively Women Magazine, highlights the difficulties positive women face in having relationships and starting a family. It made me think of Nadja Benaissa and how hard it was for her as a young vulnerable woman to learn how to negotiate safer and pleasurable sex.  Still in the eyes of the world she is a criminal. Is this Justice?

Susanna’s Story

When I reflect about it I often think it was the fact that I was unable to form healthy relationships that put me at risk of HIV.

Since my teens into my late twenties I was emotionally unstable, lacking self-esteem, haunted by depression, my self-destructive tendencies made me take lots of drugs and unreasonable risks. I didn’t cope well with rejection and this made me unable to insist on condoms, even when it was clear I was in a very risky relationship.

I received my HIV diagnosis just few days before my thirty-first birthday in the winter of 1997. This obviously didn’t make finding love any simpler.  I was in Greece at the time and there was no social support for women with HIV. I was going to one of the main hospitals in Athene, a University hospital renowned for research in the field of infectious diseases including HIV. In spite of its international fame, while I was being treated there I was never offered a condom. My sex life and my sexual health were never mentioned. I think it was just assumed that after being diagnosed with HIV I would never have sex again.

But having HIV didn’t magically stop my desire to find a partner, and secretly I really wanted to have a baby, but how?  How do you tell somebody you have a life threatening, sexually infectious illness? When do you tell him? And how do you deal with the fear of infecting your partner? How do you reassure him that you will not get horribly sick and die?

My first attempt at disclosing was quite disastrous. First of all my capacity to select suitable partners hadn’t ‘magically’ improved. So I still went for difficult men, with selfish and abusive tendencies. The first partner I disclosed to replied to me:

‘I am so unlucky’

He was very selfishly implying that it was unfortunate for him to want to start a relationship with somebody who was HIV positive.  I didn’t say anything. I felt so lucky that somebody would even consider being with me in spite of the fact I had HIV.

When after a few months we broke up he went on diffusing the news among our social group. People came to me and asked: ‘Is it true you have AIDS?’

Following this I spent two years totally unable to tell any partner about my diagnosis. I tried to enforce condoms as much as I could. But it was often impossible. I lived in tremendous guilt, shame and loneliness. I broke off several budding relationships because I just couldn’t bring myself to tell.

I finally moved to London, and for the first time went to a self help group for women living with HIV at Positively Women. It was a welcoming environment and a life changing experience. Free condoms and female condoms were abundantly available. I was given booklets which explained how positive women could not only have pleasurable sex without infecting their partners, but could even have, with the appropriate interventions, HIV negative babies 99% of the times.

I started my first long-term relationship since my diagnosis. It took me over six months to disclose. It was a real shock for him, but by that time our relationship was strong enough to stay together. This is why a lot of positive women delay telling their potential partners. If you tell somebody too early they will not know you enough to make a balanced decision. The irrational fears around HIV will take over the relationship. But if you wait too long, you will be judged as secretive and untrustworthy. How do you get it right?

After four years the relationship broke down.  HIV of course played a part in it. During the time we were together it was something we could not talk about. He never asked me about my hospital appointments or the results of my blood tests. What also put the relationship under stress was the fact that I really wanted to have a baby; I was in my late thirties and running out of time. He unwillingly cooperated to a few attempts at self-insemination:  it consisted in collecting sperm from the condom in a special syringe with a long plastic tube in  place of the needle and squirting it in my vagina. It doesn’t sound romantic writing it down and it wasn’t while we were trying to work out the practicalities of it. The instructions I had received at the hospital from a nurse, who had never done it herself, weren’t particularly clear. I didn’t get pregnant. At last I realized how much HIV had weighted on him during a horrid argument.  I will never forget him calling me a ‘AIDS whore’, ‘a bitch who deserved to die’. I ‘deserved to have HIV.’ He threaten me to tell all our friends so that they could know ‘who I really was’. ‘Nobody would want to know me’ he added. He later apologized. But certain words hurt more than broken bones and can not be erased.

Five years have gone from the end of that relationship.  And there is no ‘happy ending’. I am still single but I have become much better at handling disclosure. It is never easy. I now try to tell as soon as possible, mainly to protect myself. If I wait too long and I get too emotionally involved with a person, it becomes really hard to deal with the rejection.  I know many positive women who are in happy relationships with negative men who stay uninfected, but somehow things have been more difficult for me. At least I haven’t given up, yet. I often meet women in support groups who are too scared even to go on a date, because of the current fear of being investigated or taken to court for criminal transmission of HIV.

I think my story highlights some important issues. Women who become infected with HIV are often young vulnerable women, just as I was, with mental health issues, low self-esteem and problematic drug or alcohol use.  Once you find out that you have HIV those issues don’t suddenly improve or go away. However society expects you from now on to take all the responsibility of managing your intimate relationships with openness and assertiveness.

It was very hard for me to learn, and had I not become part of a collective of women living with HIV I don’t know if I would have even survived.

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3 thoughts on “Safer sex skills don’t come with HIV

  1. The consequences of painting HIV as being a sexually transmitted disease and being a matter of individual responsibility are many. Susanna illustrates how people’s thinking about HIV is still strongly influenced by attitudes that date back to the 1980s. It’s very sad that many of the people who have to bear these consequences are often already vulnerable to health problems and abuse.

    But Susanna makes a good point: people who have been infected with HIV were usually infected as a result of a vulnerability, perhaps many vulnerabilities. And they only become more vulnerable as a result of being infected.

    Social problems, by their very definition, are not matters of individual responsibility. Therefore, pinning blame on individuals who happen to be infected with HIV, as opposed to all those who could have been or might yet be, as a result of social behavior, simply makes the likelihood of reducing HIV transmission lower.

    We don’t seem to have learned much over the past 30 years but people like Susanna have a lot to impart. Let’s hope things start to change for the better.

  2. What to say….. First, thank you for sharing and giving another biting insight into the REALITY of living with & coping with being HIV+.
    To me I fear there will be many more like Susanna because most of societys youth are to caught up in the great rush of wanting to experience and do so many things. They are pressured by the media, social circles etc that they often don’t have the time or coaching to think or evaluate where they’re going or what they are doing. HIV is something that all of us have/should be aware of but it’s ego & fear that stops the rational side of people from asking or seeking the strength and courage to ask about preventative measures.

  3. Thank you Allison and Simon for your comments.
    I agree with you Simon that HIV infection must not be seen as the result of individual behavior, no matter how one got infected. Vulnerability of people is created by inequality and power imbalances. Also, there is not such a thing as ‘vulnerable’ people. People are made vulnerable by the economic and social context we live in. HIV is a magnifying lens on those imbalances and injustices. This is why I find it so compelling to be an activist. It is not just a mere matter of decreasing infection. It is about changing the world and the way we relate to each other.

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