One Thing I Have Learnt Since My HIV Diagnosis

I have learnt to love myself

That I can live

I appreciate every day

To be grateful, count my blessings

I learned I can make friends

That there is new life after a HIV diagnosis

To know my body and recognise when something is wrong

Appreciate every day of life I have and make non judgemental female friends

Not to judge others, to appreciate people more

To be selfish and arrogant in a good way

I can have fun and be strong for my daughter

Joining PozFem has enabled me to disclose my status without fear

That life goes on

That HIV is a great leveler, makes no difference what or who you are

To live life for today

I learned to be blessed and not be as judgemental as I was before my diagnosis

HIV has helped me live life and made me stronger, I am now able to do talks, challenge misconceptions around HIV as well as judgemental attitudes

Medication alone is not the answer, that psychosocial support is just as important in learning to deal with HIV

I have more inner resources, and that there are people who are worse off than I am

I don’t have to tell everyone everything about me

I now have hope and courage to deal with the challenges that HIV presents to me

Having HIV is not the end of the world

Accept myself and to take care of myself and my kids

I am stronger than I thought I was

Life would have been better if I did not have HIV, however, I have learnt to use condoms!

I am now able to tell people my status, I can and I am supporting newly diagnosed women and I have now been able to disclose my status to my children

I am strong, that never having been an expert in anything,  I am now an expert in HIV

To focus on positive things

That being HIV positive is not being dangerous, and I have now been able to disclose my status to my children and my grandmother

I have learnt to love myself, start a degree course in events management

There is life after a diagnosis, that I can live and see my children and that I can make friends.

PozFem Members Manchester September 2010

‘Criminalisation’ increases stigma and punishes vulnerability

X was convicted of grievous bodily harm through the reckless transmission of HIV, and was sentenced to 32 months in prison in June 2006. She told her story to Positively Women Magazine:

Sometimes you take the wrong turn in life; you can get lost but hopefully you find or work yourself back on track. It’s taken nine years and cost me my liberty, job, mental, physical, and emotional health, plus a year away from my daughter”s life.

My name is X I was diagnosed with HIV in 2001 and literally shut down.

I lost my freedom and anonymity in this world, which still has repercussions. Will it all rear its ugly head again one day? Will somebody remember? This is my biggest fear. ‘Criminalisation’ increases stigma and punishes vulnerability by assuming the worst about people it victimises.

The investigation surrounding my case felt like a ‘personal mission’ on behalf of the police and one officer in particular. The intrusion into my home and the way I was treated by the investigating officer was vindictive and uncompassionate and to this day leaves a bitter taste in my mouth.

The investigating officer leaked my story to the media; this led to him being taken off the case. However, he still felt driven enough to show up at court on the day of my conviction. The force need more training in understanding and handling of cases of HIV transmission.

HIV ‘criminalisation’ is the far-reaching consequences, there is no protection for your family. I was forced to disclose my status to my daughter because of malicious gossip that started in the school playground at a time when we were just re-adjusting to life together and at an age, I felt, she was too young to have to deal with this information, though I am happy to say she coped very, very well.

Going to prison was the most alien thing I had ever had to do in my life. Leaving my son tore my heart apart; it left me feeling guilty and eventually redundant as a mother. What if something happened to him whilst I was locked away? I should have been protecting him and I just felt so hopeless. I would wake in a panic asking myself what if he lost that bonding with me? I felt as though I was drowning. In the meantime my child was growing up without me, losing his first tooth, learning to tie his shoe laces…

Like so many others behind bars I believe that I would have achieved so much more by being given a community sentence and getting the correct support and help. However, the vindictive nature of current political legal thinking combined with media frenzied hysteria demanded incarceration; it seems to have made the knee jerk reaction an art form; following rules and regulations that cannot be supported by logic.

There is little of the prison service that makes any sense to me, it’s a ‘one size fits all’ policy, but common sense tells you this cannot possibly be the case. The prison service is incapable of differentiating between the state of depression and feelings of suicide. It is incomprehensible that people with mental health issues can ask for help, there is none.

I want people to know that losing your liberty is so much more. I want people to know that being sent to prison is to enter a world of fear, anxiety, and daily uncertainty. I remember finding my control, something that only I could switch on and off and not the officers not the prison, not the system and it felt so good… I pushed my fingers further and further down my throat and at last I had learnt how to make myself sick. It was such a release and felt so good! They had destroyed my soul, my relationship with my son and I hated them for the pain.

Having my life constantly in the media made me feel exposed and vulnerable. I was stripped of everything. When inmates gossiped, I felt hounded by the pack mentality, when people do not know the truth they can be very cruel and ignorant it’s a very scary place to be locked in amongst people with ill feelings towards you.

I was rigid with fear at times each day having to try to justify myself to people. I felt I was going insane, totally isolated. Sometimes there were no words for the dark spaces between breaths. Grief was a blanket that enveloped me and nearly suffocated me.

I was luckier than some high profile cases and I soon began to make friends and be accepted on the wing. My relationship with the officers was good and when stories were leaked to the newspapers, they managed to halt the delivery at the gate, although as much as they tried magazines, newspapers still managed to circulate without a total ban on these things it is impossible to detect every story.

What was extraordinary is how much strangers cared. The letters of support poured in. It was touching but confusing and slightly frightening. It is a big responsibility to return so much affection. To know that people you’ve never met and never will can feel so warmly towards you.

I am happy to say that it was fairly easy to readjust to being home and outside again and I had the opportunity to have weekend leave before my release which quashed a lot of fear around the media and my being recognised. Before my release I made sure that I had support networks in place, I had a brief stay at a Respite Hospital, I reconnected with my counsellor and most of all I had Sophie at Positively Women. Sophie had supported me all through my prison sentence. I also made referrals to an eating disorder clinic to tackle the demon I had bought home with me, bulimia. My friends were supportive and with me all the time for the first month.

Sophie was a lifeline for me in and out of prison. I do not believe I could have coped as well without her support it was so precious, without Positively Women I sometimes wonder if I would still be here today! Sophie gave me hope, strength and a way of looking forward instead of continually going backwards. Those were small steps but were to be very powerful steps, knowing that there was support, people whom cared and believed in me helped me to start believing in myself again.

The visits were also a welcome relief from the boring existence of prison life they made me feel like a person again and not ‘that criminal’. I did not like myself feeling down and ugly with HIV and here was a person who took the time and patience to help put me back together again.

Finally the day of my release arrived, I was scared, excited, sad and unsure. My first few days were spoilt by media intrusion trying to get my story, getting in my face whilst out on a school trip with my daughter. I could not believe that they would sink so low, but nothing could take away my daughter again and this was the best feeling in the world! I lost a year of my daughter’s life, how do you give that back? Through guilt and trying to make sure he wants for nothing!!!

Life today revolves around my daughter. I still have dark times where I allow the HIV to have power over me, the days I despise it and question ‘why me?’ Days I think I will never be the same again, days that I have under the duvet and wish that by some miracle it was all a mistake!

I appear confident on the outside but inside there is still a battle raging with low self-esteem and confidence. I lost my job at a company I loved to work for and still miss so very much. I wonder when I will feel confident enough to go out and face the interview process and CRB checks. Until then I try to focus on the positives that have come out of my situation, the family that are back in my life, my adoring and very talented daughter, my trusting and loyal friends and the fact that I am alive and I am FREE.

X was convicted of grievous bodily harm through the reckless transmission of HIV, and was sentenced to 32 months in prison in June 2006.

Safer sex skills don’t come with HIV

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.