Ofala’s story

My name is Ofala, I am 45 years of age, and I am originally from Nigeria. I am currently divorced and Christian by faith. I have three children. I have known about my HIV-positive status since 2002.

My story begins in 1989 when my husband got a scholarship to study in the UK. During his studies he managed to organise travel documents for our eldest children to live with him in the UK, while I remained in Nigeria with our last-born son as he was two years old and too young to travel.

Years went by and it seemed my husband had totally forgotten about me. I used to call him but he would always complain that he lacked money. Finally I was able to join him on a visit visa for one year together with our youngest son in 1991.

During my stay I noticed my husband had totally changed. His feelings and behaviour towards me had changed. He was not intimate as he used to be with me. And when we did have sex there was no romance. He spent weeks on end away from the house, claiming he was on business trips. He would receive calls in the middle of the night and would dress up and leave. He was constantly coming home smelling of beer and cigarettes, behaviours he never had when we were back in Nigeria, especially since we are both from very strong Christian families.

Whenever I questioned him about his behaviour he would get so upset and storm out of the house. His answers to everything were that he was trying to make ends meet, to provide food and shelter for our family. He accused me of complaining all the time yet I was not working or bringing in any income to the house. Our relationship was very strained. And the children were affected emotionally and psychologically by the constant fights and arguments, forcing him to retreat for two or three weeks continuously away from the family home.

My visa was now almost coming to an end and I urged him to renew it. But he would not hear of it. He argued he needed to have some time apart to think about our relationship and whether we would have a future together. I was very hurt and devastated that my loving husband was so ready to destroy our marriage and leave our children without a father.

I went back to Nigeria and got a job. I did not want to annoy my husband so I stopped phoning him and hoped that he would grow to love me once again. But he never phoned. It’s only my children who communicated with me on a constant basis. My husband surprised me in 1994, when he asked me to come and visit him and the children.

I was blown over the moon. I knew for sure he wanted me back in his life. So I dropped everything, packed up and left Nigeria – hopefully this time for good. At the arrivals, I saw my husband and waved at him with joy. He did not welcome me at all but instead handed me an envelope containing documents. I was so frustrated by his lack of emotions or concern. He picked my up luggage and demanded that I sign the documents within a week.

I opened the envelope and found divorce papers. I was in shock and cried the whole journey home. He instructed me to stop wasting my time by crying because he had made up his mind.

We lived together for three months but not as husband and wife, just the occasional sex when he was drunk. I finally decided to sign the divorce papers and move out with my children.

He had already organised for me a three-bedroom flat in London and instructed me to look for a job to care for our children. I knew for sure he had abandoned us. I managed to get training through an agency and worked as a healthcare worker in a home that housed very elderly and sick people. The work was exhausting but I had no option but to carry on.

Soon afterwards I met my new partner. We lived together from 1996 to 2002.

In September 2002 I felt very ill and was rushed to hospital. The doctors confirmed that they had performed all the tests but they all turned out negative. One of the head consultants requested if they could carry out an HIV test as a last resort.

The word HIV made me drip cold sweat behind my back. My forehead instantly developed spots of sweat. I was speechless for almost five minutes. But I needed to know what was eating me up. I gave him the go ahead. The results were back after two days and it confirmed I was HIV-positive. I knew I was definitely going to die; I lost more than 10 kgs in two weeks. I was so depressed and worried about my children and how my death would impact on their young lives.  

Whenever I called out to the nurses they would take hours to come or not come at all. I hated myself and I despised the hospital nurses who also contributed to my increased stress levels and downward spiral of depression.

The word HIV made me drip cold sweat behind my back. I was speechless for almost five minutes. But I needed to know what was eating me up.

I expected these nurses to care for me and support me and encourage me, just like they did with the other patients. But never once did I get any support. Some nurses even prayed that I already had children otherwise my name would die and I would be forgotten forever. Some nurses prayed for my soul and some nurses cursed me for being promiscuous and some hoped that I could die quickly to reduce the contact of caring for me, while others said they were afraid of catching the virus.

I was so hurt; I thought these nurses had been trained about HIV and the way it can be transmitted. How could they deny me care because they feared that I would infect them? But I didn’t have the energy to argue or fight with them. There was nobody there I could ask for advice regarding my rights in terms of inhumane treatment. Then again I was too afraid to report them because I feared they would treat me even worse than before.

The hospital actually brought in a doctor [from elsewhere]. I don’t know why but I just assumed they were defeated with my care or too afraid to care for me. My new doctor encouraged me and gave me hope to keep fighting on. She told me that there were millions of people living with the HIV virus all over the world. And as soon as I felt better she would refer me to support organisations that she had been working closely with.

I had no option but to disclose my status to my partner. He was in shock and decided to go for an HIV test. His test turned out HIV-negative and after a few days he disappeared from the house, leaving my children to their own fate.  They had nobody to care for them or even protect them.

My children, especially my 15-year-old daughter, had to care for me. She bathed me, cooked and cleaned the house.

After three weeks I was discharged. But I wasn’t strong enough to care for myself. My children, especially my 15-year-old daughter, had to care for me. She bathed me, cooked and cleaned the house. She was also the one giving me my drugs and ensured that I kept [to] the required time. The drugs made me feel even sicker but I promised my doctor to take them religiously. My two boys (16 and 13) would do the general shopping, mowing the grass and keeping up with all the utility bills, which were accumulating day by day.

My children complained to me that they no longer felt like children. Their house duties and caring for me were just too much for them. Sometimes my younger son would even wish that he could be adopted so that parents could look after him, instead of him looking after his parent.

I was quite sickly and had to keep going back and forth to A&E. At the nurses’ offices I overheard a Nigerian doctor asking a Nigerian nurse in my mother tongue what was the problem with the next patient. And the nurse told him that I have HIV. The doctor said: “I don’t want to deal with any HIV-positive person, give me another patient.”

I waited endlessly hoping and praying that one doctor would want to see me. When he arrived and examined me. He realised that I had a blood clot on my leg and I was immediately admitted.

The nurse in the ward wrote on my hand tag “HIV”. I felt so ashamed and distressed. Everybody that saw me or attended to me – even the caterer – knew I was HIV-positive. Even student nurses and doctors kept their distance and looked at me with such fearful eyes. I needed somebody to talk to, I needed some spiritual support, I needed someone who was HIV-positive like me to say “everything was going to be ok”. But there was nobody. I felt so sad and even thought of committing suicide.

Some of the nurses even disclosed my status to my friends. And they stopped coming to visit me. They all deserted me. My doctor was the only one who kept checking up on me constantly. She noticed I had developed another blood clot which the nurses never bothered to check because they wouldn’t dare touch me.

In the meantime, my children were very distressed about my partner disclosing my HIV status to his family and friends. We had common family and friends and he went around telling them that I wanted to kill him with HIV. He disclosed my status to most of my close relatives. My uncle in Nigeria was also informed. He in turn informed my entire family in Nigeria.

All this was just too much for me to handle. Not only was I dealing with my own HIV status, my drugs, my health, lack of income but I also had to deal with my children’s distress of being bullied and called horrible names by neighbours’ children because of me. I did disclose HIV-positive status to my daughter but my two boys found out about it through the internet. My boys googled the names of my drugs and confronted me about it. And I told them the truth.

A lady from an organisation called AHEAD, who was also HIV-positive, came once a week to see me and she encouraged me and lifted my spirits. She mentioned that they have about 30 members in their support group that were HIV-positive. That really lifted my spirits and made me realise that I wasn’t alone. When I was discharged [she] took me to one of the support groups.

There were men and women of all different ages and from different countries. Everybody was here to share their stories and experiences of how they were infected and how they were now coping with HIV-positive status. I finally felt at home and I felt these people were my family. Whenever I was at the groups I never felt fear or experienced any anxiety. But whenever I left all those feelings came rushing in.

I had lost a lot of weight. I believed that everybody knew that I was sick with HIV. I became so self-conscious about my body. And whenever I meet with any of my old friends I would immediately cross the road and pretend that I never saw them. Because of my weight loss, I never had the strength to walk around for long distances so I had to use a wheelchair most of the time.

Through AHEAD I managed to get all the support that I ever needed. I never realised that I was entitled to state benefits. I was also given a part-time carer. This really relieved my children from all the household duties and enabled them to concentrate more with their studies and also have some free time to hang out with friends.

I had lost a lot of weight. I believed that everybody knew that I was sick with HIV. I became so self-conscious about my body.

I am now feeling much better. AHEAD also referred me to the Jobcentre, I trained as a healthcare worker and attained my NVQ3. I was lucky and managed to secure a place. 

I have been working now for two years as a healthcare worker but I have never disclosed my HIV-positive status to my employer. One of the major reasons for that is because of the experience of one of my former work colleagues when she disclosed her HIV-positive status to the employer.

The employer seemed to be fine with her status at first but seemed to give her the most difficult clients to handle. Other colleagues also started keeping their distance and stopped talking to her. Everybody was requested to stop sharing cutlery. It was a difficult time for her. Nobody wanted to use the toilet after her.  After three weeks she was requested to resign since the organisation was dealing with vulnerable elderly people. The employer explained if one of the employees infected our clients then the agency could be shut down and sued millions of pounds. They also told her due to ill health she wasn’t in a position to handle heavy and difficult clients.

Since I’m now back to full-time employment, I recently applied for loans from two different banks but after I disclosed my HIV-positive status they said I wasn’t eligible for the loan. This really hurt me. It made me feel like I couldn’t plan for my own life. HIV was in control of my life.                                                   

I used to get a lot of support from my HIV specialist at the HIV clinic and sometimes I could just call her when I was very sick and ask for advice. But nowadays the system has changed. You only get to see your HIV specialist if lucky after three months. If you fall ill before your next appointment you are supposed to see your GP or go to A&E.

I really don’t like going to my GP. Every time I go to the GP I find a new GP to whom I have to explain my medical history all over again. And at A&E you can wait up to four hours and more, and when you finally see them, you have to inform them of your medical history again. I just don’t understand why they cannot read the previous notes.

In my faith, we do not believe in sex before marriage or in adultery. I still go to church every week but I have never felt confident enough to disclose my HIV-positive status to my pastor. I wish I could tell him so that he could pray and offer me spiritual guidance. But I fear rejection and discrimination. So for now I leave everything to God.