Updated 18 October 2016

I gave my husband HIV and watched him die

Stephanie van Niekerk unwittingly infected her husband with HIV and ended up having to watch him wither and die in front of her very eyes. This is Stephanie's story in her own words.

What is my name? I'll tell you later. What matters now is the story I am about to tell you.

I was different

I was born on 8 July 1975 to a loving mother and doting father. I have one sibling, my dear brother, five years my senior.  I was raised in a normal home with normal attitudes and normal values. My parents were members of the Dutch Reformed Church, and my brother and I absorbed its doctrines. 

From a very young age I knew I was different. I wore shorts and T-shirts, hated dresses, and to this very day I hate the colour pink. I played with my brother’s cars, trucks and whatever else was his. My dolls gathered dust on the shelves in my room. I was always covered in mud and grease and some stuff from the garage that my mom always moaned about.

When my dad decided it was time for fishing or a camping trip, I was the first one who joined him. When dad worked on a car, I was the one with my head under the bonnet with him asking questions.

Life was good, I was happy, my family was happy. I felt loved and I wanted for nothing. But life was about to change forever.  On 1 June 1982 my dad decided to go and visit grandpa, said goodbye, climbed on his bike and drove off.  I was very sad because dad was going to be away for a week. I remember my brother and I joining my mom that evening in my parents’ bed to help us cope with dad not being there.

The following day was like any other. I went through all the motions of school and sport until I got home that afternoon. Mom was crying, her eyes bloodshot and red. Before we could ask what was wrong we were ushered into the office of the General Manager at the property where my parents were working. 

There the GM told us that my daddy had gone to heaven to stay with our heavenly Father. I remember walking out of the office straight into my mom’s arms. The three of us just stood there holding on to each other, crying.

My whole world shattered that day – my daddy, my hero, the one person I knew would always love me was gone, forever. 

'I was a tomboy with a twist'

After that we somehow managed. Mom worked two, sometimes three jobs just to keep us going. We travelled from city to city and province to province. I can joke and say that in the years when we still had four provinces, we lived in all four at some point in my life. Once I was in three different schools in one year. 

Life carried on and we grew apart. My brother and I were in separate hostels and my mom was distant, not the way she used to be. We lost all contact with friends and family and life just kind of happened.

It was in my early primary school years when I realised that I was different to most girls. I played cricket and rugby with the boys. I was a tomboy, but with a twist – I wanted to ask my best friend to be my girl. Yes, I was gay. I think I always knew that. 

I dated boys and never spoke off it. I never told anybody about the conflicting feelings that were raging inside me. I kept it to myself.  I remember the one day at primary school when my class was invited to an underwear show at the church. I remembered how I struggled to keep my eyes from wandering. I could only focus on the “boobies”.  But I never came out and I never ever let anybody know.

I dated some girls in my high school years, but always took boys home as my dates or boyfriends. Life carried on, but bit-by-bit things started to fall apart. I started drinking and smoking at 16, and sometimes I would binge so bad on booze that I had no idea who, what or where I was. My mom got re married while I was in Grade 11 and moved from Gauteng to KwaZulu-Natal.

I stayed in Gauteng to finish matric and just managed to scrape through. A lot happened in my matric year that would have broken a normal person, but my perseverance and determination kept me from falling apart. 

The year after matric I landed in a centre for the homeless, based in Pretoria. I became friends with the pastor’s son. We were inseparable and did everything together. Yes, we even slept together. He was my brother my friend and my lover. The day he tried to commit suicide, I was in his room when he pulled the trigger. I was the one who called for help and stayed by his hospital bed. I never left his side. 

'I had to let him go' 

My mother eventually decided that she needed to help and they came and fetched me to the Eastern Cape coast. This is the place I love above all others in South Africa. I stayed in their home for five months until my step father chased me away like a dog. Long story short, I moved in with a dear friend of mine who was in the AFM church with me. Later that year I met her daughter, and a friendship like no other was born. For the first time I had a female friend with whom I wanted to be no more than friends. She was and still is very dear to me.

Life carried on. I was very involved in the church and ended up falling deeply in love with one of the youth pastors. I thought that he was "the one". However, he gently took me aside one day and explained that he did not feel the same, that I was confused and needed to let it go. I once again resorted to binge drinking and tried to drown my sorrows. I was still involved with the church and still tried to live a good life.  

My mom and stepfather moved back to Gauteng and in August 1997 I got a chance to visit them. I drove up with a friend from church and stayed for almost 2 weeks. 

On our way back to the Eastern Cape we drove at a leisurely pace, stopping here and there, visiting friends in Bloemfontein and feeding stray cats at the Gariep dam on a picnic. Little did we know that life was about to change again for the umpteenth time. Between Middelburg and Graaff Reinet we had an accident.   

As a result of the accident I was in traction with my back broken in three places. It was then that I came to the conclusion that my church and the people I loved did not feel the same about me. My friend and I were in the same hospital, in the same ward, opposite each other, but here is the kicker, she was from a wealthy family, had her own business and obviously was of value to the church.

The pastor, the youth pastor, members of the congregation only visited her; they never ever once turned around and asked how I was doing. The people who came to visit me were the friends from the clubs I frequented. Even the owners of the clubs came to visit me and they were the ones that raised money for me to pay for what I needed.

16 days and two operations later I left on crutches. In Oct that same year I visited my mom in Gauteng again. I took the bus that time. Being on crutches has its advantages because I got spoiled by everyone on the bus. I even smoked without anyone complaining.

It was actually only when I was with my mom that the doctors realised that my back was broken. L3, L4, and L5 were confirmed compressed fractures. What saved me was the fact I had been in traction for almost a week.

'I truly am a lesbian'

I eventually went back to work, back in the Eastern Cape. My dear friend, her mother and grandfather became my family, the people who loved and supported me. My friend and I moved into an apartment again and life was good. I was back on my feet – I was alive and working. I even got my driver's licence in 1998 and things were looking up.

The people we rented from became my other family and I was invited to family celebrations, Christmas parties etc. They even set me up with one of their grandsons, a biker and a "bad boy".  Although I was dating a girl at the time, I decided to meet him for a date and see what happened.

Well, I broke up with the girl and the biker and I moved in together. We had our moments, we fought, but we stuck with each other. I loved him, yes I did. I am not bisexual; I truly am a lesbian. I wasn't confused; I really did love him. He was my first real boyfriend. We got the chance of a lifetime at the end of 1999 to go and live and work in USA. Everybody begged us to get married before we left, but he did not want to.

We left in Nov 1999 for a contract period of 6 months. Life was eventually treating me well and on 10 December1999, after the staff Christmas party, he turned around in bed and said, “So I suppose we should get married then.” Oh boy, the news spread like wildfire through the company and everybody wanted to take part in the planning. On 29 January we tied the knot. 

We worked like never before and secured another two years in the management training programme. The first year of marriage was hell, though, and after only 3 months of being a Mrs I wanted a divorce, but my mom talked me out of it and we pushed through the difficult times. 

In December 2001 he discovered a lump on his right testicle. However, the urologist assured us that it was only a calcification and nothing to worry about. Yeah right! In March 2002 I had to rush him to hospital. It was a Sunday morning and he could not walk. It turned out that the calcification was actually stage three testicular cancer, which had already metastasised to his lungs and lymph nodes.

We were devastated. He had emergency surgery to remove the testicle and the cancer, and a month later was booked in for his first chemo session. The chemo lasted for five days each month.

After the fifth month he had some more MRI scans to check the progress, but there were still spots on his lungs, and surgery was the only way to determine whether it was active cancer cells or just scar tissue. 

'The chemo didn't work'

To see you husband in so much pain and discomfort is heart-breaking, but being his only family there I had to stay strong for both of us. I cried myself to sleep most nights while he was in hospital. After the lung operation he was in ICU for three days with machines keeping him alive. It was hell. I almost died every time I looked at him. But he was a strong person and his will to survive carried him through. He was transferred to a regular ward and stayed for another two days. Remarkably, he was back at work in less than a week after being discharged.

The results came back, but what a let-down – the chemo hadn't worked! He was instructed by his oncologist to go and see a well-known oncologist in Minnesota, the same oncologist that treated Lance Armstrong. They were going to start high dose chemo, but before that he had to do stem cell harvesting as the high dose chemo would just about kill him and they needed to give him something back after each treatment to try and strengthen his system.

Afterwards, though, they realised that they hadn't managed to harvest enough stem cells and that something else was wrong. Once again he had to undergo the one test after the other. In December 2002, the results were back and we were summoned to the doctor's office.

It turned out that my husband, my rock, was HIV positive!

Plan of action? What plan of action? I was advised to get tested as well, seeing that we were married. On 27 December 2002, very early in the morning I waited in the doctor's surgery for my results. It turned that I was also HIV positive. I was devastated, my life was over and my dreams were shattered. And I hated my husband. I wanted nothing more to do with him. 

I remember that I drove around for a while trying to clear my head, trying to get myself so far to go home, to go home the one person that I vowed to love and honour until death do us part, in sickness and in health. I just could not get my mind or the car to go where it was supposed to go. I wandered around for hours on the beach, feeling sorry for myself. I can’t remember what time I eventually got home. I know it was late. It was already dark.

I remember walking into the apartment where he was waiting for me. He tried to hug me, but I pushed him away. I just could not. My thoughts were, “Don’t you dare touch me; stay away from me!" 

Later that night after midnight I called my mom and told her the news. I never thought that she would be so supportive, but she became my one true pillar.

'I was the one who infected him'

My husband received four more chemo sessions and we were both immediately put on ARV’s. The unexpected, devastating bomb burst when the Centres for Disease Control (CDC) in Atlanta ordered ageing tests to be done on the virus for the both of us – and it turned out that I was the one who had infected him, and not the other way round! 

We started tracing back my history – and eventually we came to the conclusion that while I was in hospital after my accident I received untested blood, and subsequently got infected with the virus.

It was my fault that he was now infected, my fault that he was not getting better, my fault that the chemo was not working.

Our time in the USA eventually came to an end. Before we left, he went for a checkup and was given the all clear. His cancer was in remission. Our marriage was stronger than ever and we were closer than ever. But we knew that we were living on borrowed time. We arrived back in South Africa May 2003. 

We lived in Cape Town for 2 months, after which we were offered positions back in the Eastern Cape at a property close to the Addo Elephant National Park. We accepted and subsequently started our new lives. Everything was great. Our salaries were modest, but we managed, even though we could only afford for him to continue with the ARVs.

In Nov 2003 after another checkup and MRI scan, he was still in remission and was doing well. In December, however, it was another story. It became apparent that something was amiss. He got tired very quickly and he battled to sleep as everything was causing him pain. 

On 10 January 2004 our GM called us into his office and bluntly told us we needed to go home. He told me to take my husband home to his parents, as he was dying and we needed the support of our family.

We left that afternoon. He drove all the way from Addo to Plettenberg Bay, at which point I took over as he was exhausted.

We arrived in Mossel Bay later that afternoon. The next couple of months were the hardest I ever had to go through.

He lost the use of his legs the week after we arrived. His cancer was back with a vengeance!

He had tumours all over his body, visible tumours all over. He was admitted to the hospital in George and a fantastic oncologist took on his case. He received radiation, but we were told that it was merely to reduce the size of the tumour in his brain as there was nothing else that could be done for him. 

Read: HIV patients face an increased cancer risk

The last months

He lost his eyesight and most of his hearing in the weeks that followed. I was his nurse and took care of him in those last months with all my strength. I slept on the floor next to his bed, always there, always available should he need me.

One day, I think it was 1 March, he spoke, called me to his bed and for the first time in a long time he was completely lucid. He told me to call my mother and to get her to come.

He proceeded to tell me the following: “You are a young vibrant woman, you have your whole life ahead of you, please fall in love again, get married, but promise me one thing, don’t ever fall for another man. Be true to yourself and true to who you are. Be strong and come out!”

My heart was torn from my chest because I knew why he was saying this. He was saying goodbye.

I called his family and told them that they had to come and say their last goodbyes, that they needed to prepare for what was coming and needed to let him know that it was okay for him to go.

Friday 5 March I left the house to pick up my mom from the airport in George. He gave me the thumbs up as I left his room. I told him that I wouldn't be long. I arrived back later that morning, mother in tow. I went to his room, gave him a kiss and told him that we were back and that my mom was there.

He passed away at 11:15 am as I held him one last time.

He took his last breath in my arms. My whole world was shattered. My heart was broken and the pain just kept coming like waves flowing over me one wave at a time. I washed him one last time, took out all the tubes and needles and then proceeded to lie next to him, holding him for two hours.

The next couple of days were a haze.

I slept a lot and I cried a lot – my pain was unbearable. I woke up that Saturday morning with the sickening feeling that his feet must be ice cold, as I never gave the undertaker socks to go with his outfit. In my pyjamas I jumped into the car and drove all the way into town. Six o'clock that morning I was banging on the undertakers door. Luckily they lived above the mortuary and the gentleman opened the door, somewhat taken aback. I pushed passed him, tears in my eyes begging to see my husband. I walked into the cold room, saw my husband, looking so peaceful, like he was taking a nap. He had a smile on his face as if he was having a great dream. I put the socks on his feet and adjusted his chef’s jacket as the undertaker had buttoned it up incorrectly.

I gave strict instructions to the undertaker that no one was allowed to view the body, not even his parents. I did not want anybody to see what he looked like. He had weighed 110kg and stood 1.92m tall, but when he died I could have picked him up; there was nothing left of the man that I loved. No one was to see him like that. I wanted them to remember him the way he used to be.

His Memorial was on 9 March and he was cremated on 11 March 2004. I pushed his coffin into the oven and stood there watching the flames. I was told that it could take up to a week to get the ashes back, at which point I lost my cool and demanded that I receive my husband's ashes before the weekend. That Sunday my father, mother-in-law and I drove up the Outeniqua Pass. At the top I scattered half; the other half I kept in my car under the front passenger seat for a whole year.

The ghosts of my past

In Oct 2004 my GM from the property near Addo called me and asked if I would be able to come back to work. I accepted and moved back to the Eastern Cape. I thought I was ready, but I was haunted. Around every corner I saw my late husband as I was back where we shared our last months together. I fell into a very deep depression and nothing made sense. I was so messed up that I sought compassion and solace in the arms of a married man.

I eventually realised that I could not stay there and needed to get away from the pain, the ghosts of my past. Fortunately a very good friend of mine called me in December and told me that they were in the process of opening a new lodge in Gauteng close to Krugersdorp. I forwarded my CV, took the drive up to Gauteng for the interview, and got the job. 

Back in Gauteng, 2005 started with a bang.

I started feeling very sick and lost a lot of weight. I went to the doctor, and it turned out that my CD 4 count was 111 and my viral load was in the hundreds of thousands. I was not doing well, in fact, I was very close to death.  My doctor immediately put me on ARVs. I met some wonderful friends, and started to slowly but surely get my life back. My health came back bit by and I felt stronger every day.  

Read: Understanding CD4 count in HIV positive people

I had a fantastic job and my friends were amazing. However, on the morning of 1 May 2005 I arrived at work only to be told by security that we (Outsourced Cleaning Company) were not allowed on the property. It appeared that the contract had been cancelled, and I was retrenched.

I then applied to go back to the USA; I completed all the steps and was getting ready to go back to the States. One of my dear gay friends even promised to marry me so that I could get my green card and stay permanently. But alas, that was never to happen – I was on my way to the American embassy when I got the call that I had been refused due to my age. 

Once again I was devastated, but like the saying goes, all things work out as they should in the end.

My best friend and I moved to Mpumalanga in July 2005. At that time I met three girls on a chatting site and invited two of them to come and visit me. Only one could make it – the girl I really wanted to meet was working shifts and couldn't take a whole weekend off.

In August 2005 the girl who came to visit became my girlfriend and moved in with me. My best friend's girlfriend also moved in and we were one happy family. Very significantly, though, I stayed in contact with the girl who couldn't make it that weekend, and we became very close friends.

Another great trek

At the end of July 2007 my girlfriend and I moved back to the Eastern Cape. The company I was working for opened a lodge and I asked to be transferred. I was ready for the Eastern Cape and to face my demons from two years earlier.

We worked side by side, but in 2010 our employer let us know that they were going to cut the staff by half as the property wasn't showing a profit. They asked us to look for other employment.

My girlfriend and I secured positions at a small lodge in Mpumalanga, so once again there was a great trek. On my way to Mpumalanga I stopped in Vanderbijlpark to see my mom and my brother. I almost did not recognise my mother; she was skinny and did not look healthy at all. When I asked my brother about her he just said that he had no idea what was going on – she herself told me that she was in and out of hospital and no one could find the cause of her illness.

I asked my brother to keep an eye on our mom and to let me know should anything happen or change. 

I arrived safely back in Mpumalanga and got thrown into the deep end. The management company for the property was very difficult to interact with and we continued to butt heads.

My maternal grandmother passed away early in Jan 2011. I travelled to Gauteng for the memorial service and renewed some family bonds.

My mom was looking worse for wear. I just could not let it go and took her to a private physician and demanded that everything be done to find out what was ailing her. Results came back all good, and according to the doctors she was in perfect health. She didn't look as if she was in perfect health, though, and ended up having a number of car accidents because she insisted on driving in her weakened state. I told my brother to take away her car keys and if she needed to go anywhere he was to take her. It wasn't easy as she has always been very independent. 

My mom passed away

Early in April 2011 my brother called me to say that things were not looking good and that our mom was deteriorating at a very rapid pace. She was in a provincial hospital, her right leg swollen to triple its size. I demanded that my mom be released in my care as I was not happy with the diagnosis.

I spoke to my brother and we agreed that the local hospice close to my brother was the best option for her. We booked her in, and for the first time in weeks she managed to eat something. I left a couple of days later, feeling a bit better about the situation but not entirely satisfied. My heart was breaking for my mom.

On the morning of 20 April 2011 my brother called me with the devastating news that our mom, my rock, my anchor in life, my biggest fan and supporter has passed away. I was inconsolable. 

The funeral was on 28 April 2011. I had some money left from my pension fund, so even though my brother is older than I am, I paid for everything. On return to the property I managed with my girlfriend I was told that we had been dismissed. We packed and moved in with my brother in Vanderbijlpark. 

My girlfriend got a job, but I just could not get anything permanent. I did however get some contract work for four months at a local resort. In Aug 2011 I was offered a contract position in Nigeria at a new property. I immediately accepted. In actual fact I could not wait to get away from everything and everyone. Things had started to fall apart in my relationship; we were drifting apart from each other and I just needed to get away from her and the situation.

What an experience. Everything was so different to what we are used to. I trained the accounts staff on the operating systems as well as the company's policies and procedures. The lifestyle in Nigeria is very different, but I loved it and made amazing friends. I returned to South Africa in December 2011 for a short break before going back. While I was at home for Christmas my paternal grandmother passed away.  

I returned to Nigeria to finish my contract period in Jan 2012 and eventually returned home in March 2012. I decided that I would take a short break before resuming the endless search for work. My girlfriend and I attended a getaway weekend organised by “The Pink Girl Festival”. 

Return of 'the other woman'

I called my friend, "the other woman" I met on the internet and asked her to join us, but once again she was working shifts and could not make it. The weekend was a disaster and at that point I knew that I needed to break off the relationship with my girlfriend. I took another contract job for 6 months based in Sandton, again through my previous employer. 

After two weeks I decided to call my internet friend again and invite her for coffee.

I was nervous, sweating, with butterflies in my stomach. I remember parking my car at the place we arranged to meet and when I saw her standing there, it felt as if my heart was going to jump out of my chest. I saw her, for the first time, as an unbelievably sexy woman with a personality to match. It turned out we felt the same about each other.

The problem was, however, that I was still attached. We met a few times, going for drives, just talking and getting to know each other in a whole new way. 

I decided that I needed to end things with my girlfriend and invited her to come over for the weekend of the 25 Aug 2012. I was staying with her mother at the time while working at the job in Sandton, but that Friday night I could not stay there.

That Saturday morning I woke up, knowing that what I was about to do that day was for sure the right thing, as I was hopelessly in love with the other woman in my life. I met up with my girlfriend around about 11am. I asked her to get in the car and just drove around while I told her that it would be better for the both off us if things between us just ended. She begged and pleaded, but I knew I had to do it.

I dropped her off after about an hour, took my stuff from her mother's place and left. Just like that a six year relationship was over. I must admit it felt like a huge weight was lifted off my shoulders. I felt free, alive – and in love. I called my friend and told her I had nowhere to go. She just laughed and said, "Yes, you do!"

Shortly after I moved in with her I proposed to her, and she accepted. We tied the knot on 9 November 2012. My contract at the property in Sandton came to an end, and the end of December 2012 I was once again without work, but found a job in Nigeria again for three months.

I left my heart at home with my wife. The time dragged; we cried, we missed each other, and, in short, we were miserable without each other. I came back to SA end of March 2013. Our lives were back together. I was back with my wife and our married life could take off. In May 2013 I was offered a permanent position with the company I’d been working for on and off since 2005.

Everything happens for a reason at the right time

On 8 May 2013 my mother in-law passed away shortly after she turned 60. My wife took it very hard as they were very close. I comforted her, and to this very day we both mourn the loss of our mothers. I just wish they could have known each other, and I believe in my heart that they are watching over us every day.

Life has been a struggle, but I have tried to stay positive and to look forward to tomorrow. I remain very happily married to my wife, my best friend, my soulmate, the woman that I’ve know for over 11 years. At some point she asked me why we had to wait so long to be together, and my answer was that everything happens for a reason at the right time.

I am still in love with my wife and I still get butterflies in my tummy when I hear her voice or her name. She has made me a better woman and I could not have asked for a better life partner. She supports me in everything I do and has stood by me through thick and thin. She gives meaning to my life.

My name is Stephanie van Niekerk. I am the person you just read about.  This is my life, my story.

Read more:

Diagnosing HIV/Aids

Symptoms of HIV/Aids

Course of HIV/Aids


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