Abdu's story

My name is Abdu. I am originally from Sudan, Muslim by faith and I have been married twice. I have one son from my previous marriage. I inherited my father’s wholesale business and I was living substantially a well-off life [in Sudan]. I was a heavy smoker and developed throat problems, which hindered me from drinking and swallowing properly. I consulted my GP who referred me to a throat specialist who recommended that an urgent operation was required. I booked my operation with the main general hospital.

I was requested to come in for various pre-medical tests before the main operation could be performed five weeks later. I did attend my blood test appointments and I was asked to wait until the hospital nurse contacted me in a couple of weeks.

The hospital nurse contacted me after two weeks and asked me to see my throat specialist immediately. Once I arrived at his office and sat down, the doctor seemed to be very agitated and his body language seemed to say: “Please do not come near me.” He moved to the furthest end of his table and opened my file. He said: “Abdu, you have AIDS and there is no cure for this condition.” The doctor stood up and pushed a new booking form towards me, for me to fill in. He instructed me to reschedule my operation with another private throat specialist.

The doctor seemed unapproachable and did not give me any time to ask any questions. He forcefully ushered me out of his office and said he was late for his next appointment. I was left feeling confused, shocked and panicked about what to do next. That was the worst day of my life. I had very little knowledge or understanding about AIDS. And all I knew about AIDS was that it mainly affected women sex workers because of having unprotected sex with several sexual partners.

I never disclosed my status to any of my family members or relatives, for I feared rejection and abandonment.

I went home and cried for several weeks. I never disclosed my status to any of my family members or relatives, for I feared rejection and abandonment. I knew deep in my heart that if I disclosed to my wife she would definitely demand for divorce. This had to be granted by village elders and the holy Imam. I had seen from previous experiences how some holy Imams handled the issue of AIDS and promiscuity in the mosque. The holy Imams would inform the entire congregation about the mistakes a worshipper had made and the punishment that befell them. A worshipper could also be banned from the mosque depending on his level of disobedience to Allah. The banning was done publicly as a lesson to other worshippers so as to avoid falling into sin.

But I also doubted my wife, I wasn’t 100% sure whether it was her who infected me or whether it was just my silly mishap. I doubted her activities as I could not account for her whereabouts when I worked in the shop from 8am to 10pm. I heard some rumours here and there but nothing was substantial enough to accuse her of anything.

This was very frustrating to me. I started developing hatred and anger towards her. And sometimes I would physically beat her up without any reason. I would blame her for everything and anything from bad cooking to the way she spoke back to me. The pressure, stress, secrecy and fear of discrimination were now getting too much for me to handle.

There was too much at risk and I decided to divorce my wife. I had to come up with a lie. The divorce was granted on the grounds that I no longer loved my wife and that our relationship was falling apart and becoming more and more violent. At the back of my head, I felt it was the right thing to do. But in my heart I knew for sure that, if it was my wife who infected me, Allah had punished us accordingly.  After the divorce I requested my ex-wife to remain with our son for I was not of stable mind to care for him.

Rescheduling my operation was another nightmare. I kept calling the general hospital to reschedule but they always gave me excuses for almost a year. I finally had enough and marched in to see one of the throat specialists. His secretary automatically blocked me from proceeding further. She informed me that no doctor of sound mind would ever operate on me because I had AIDS. She reminded me that everybody feared AIDS because it had no cure. The secretary recommended that I move to another private hospital for my operation. To add injury to my wound, she further advised me not to waste any more money on my operation; I was going to die within a couple of months.

I left the hospital crying hysterically, I was so annoyed with my life and upset with the way I was treated by these health professionals. I now knew for sure that the entire hospital staff had been informed of my status. I knew it would only be a matter of time before my in-laws found out about the real reason for filing for a divorce. This would definitely lead to denouncing not only me but my entire family, relatives and close friends. And the rest of the community would also react the same way.

Living in North Sudan was not easy, the strict culture and norms regarding sex are very sacred. Sex and sexual health issues are not openly spoken about. I knew there was not one single support service available for HIV-positive people, because I have never seen one. No counselling or emotional support was available. Not even the health professionals had been trained to handle a HIV-positive person. I started believing what the secretary had told me and started falling into a hopeless cycle and wishing for a quick death.

There is nothing I feared more than my neighbours. Because of them one of our neighbours had to move away because they constantly pointed fingers at him and accused him of spreading AIDS to the young girls within the community.  I couldn’t bear the public humiliation and isolated myself in my house. I restricted my movement during the day and only walked out after 10pm.

I strongly believe in Allah’s punishment. Allah is the creator of everything on earth and in heaven. He gives and takes as he sees fit. He therefore has the authority to punish sinners in many ways including natural disasters – for example, earthquakes, tsunami or – if you are a promiscuous person – then Allah would definitely punish you with AIDS. There is no escaping Allah’s wrath.

The only option I saw out of this mess was to seek asylum in the UK. I sorted out all my documents and travel plans, sold most of my business and left my son behind. I arrived in the UK in 2001. On my arrival the amount of obstacles I faced was unspeakable. My biggest challenge was not being able to speak English. Doing simple stuff, like going to shop to buy groceries was a major task. And because of this language barrier everything dragged on for months on end. I had no option but to enrol into an English college to learn English.

I started believing what the secretary had told me and started falling into a hopeless cycle and wishing for a quick death.

I wasn’t able to ask my interpreter about HIV support services available. I was too afraid of the potential stigma and discrimination. Even whilst attending my English class, most of my time was spent worrying about my immigration status, therefore [I] learnt very little English in the end.  I feared deportation and the consequences that would follow if I went back home. I had to wait for five years before my stay was granted by the Home Office.

During that period I wasn’t allowed to work, the Income Support I was receiving was too little to support myself and my son in Sudan. I felt frustrated, depressed, lonely and cried most of the time. I felt that HIV had robbed me of my joy and happiness. I couldn’t even think of working as the employment forms put me off, demanding to know of any disability I had. I was still very healthy and strong but at the same time knew that no employer would want to recruit me with my current status.

My guilt consumed me and I kept blaming myself for catching the virus. My major occupation currently is to daydream, if only to escape the harsh realities for some few minutes. I imagine how my life could have been very different. I would have been a very successful and respectable member of the community. I could have married three wives and had more than ten children. This for sure is a sign of wealth and raises a man’s status within his community. Elders too could have asked me for advice on issues relating to business and economics. I could have even run for a ministerial post with the backing of my community. But all that is just a dream.

The UK culture and weather was also new to me and the fast-paced life, and people not being social or helpful only made me feel even more isolated. This made integrating even more difficult for me.

I fell very ill one day and was rushed to hospital. They asked me loads of questions, including my medical history. I had no option but to tell them the truth about my HIV status. I knew it was important for the doctors to know so that they could treat me immediately. I was surprised that none of the doctors attending to me at A&E even looked shocked or surprised. They continued treating me as normal and that made me feel at ease.

They in turn treated me and referred me to a HIV specialist. My only friend was my HIV specialist. My specialist was so patient with me and listened to my every need and concern. Through his support he referred me to several support groups. But I wasn’t ready to disclose my status to total strangers. I also hoped to join a Muslim support group, which at that time was not available.

I was too dependent on my specialist and word of mouth was the most effective communication mode for me. My doctor advised me on my general health, my HIV and the importance of taking my drugs regularly.  I relied on him totally because HIV information resources were only available in English and some resources were too complex for me to read and understand. I did not want to complicate my life even more with reading materials, so I left my care in my doctor’s hands.

My specialist kept encouraging me to join support groups. I eventually did join one support group. But I never disclosed my status for several weeks and they never pushed me to disclose either. Members at the different support group have been so supportive and caring towards me and now I no longer live in my own shell. Now it is my turn to welcome other newly diagnosed members to the support group.

But sometimes I still feel my life has gone to waste. Yes, I am now a British citizen, but HIV has put limitations in my life. It is impossible for me to get back into work, due to the fact that employers demand that you fill in your application form, the duration of your absence from employment and reasons for your absence. I am now 55 years of age and I feel that employment is not an option for me any more. I still struggle speaking and reading English and therefore going into further studies/education is also not an option for me. I feel I have been stuck in the same position forever, never moving forward.

My health has also been a roller coaster.  I could go for months without being ill but then sometimes I become so ill until I get admitted into hospital. This makes me fear starting something – for example, university – then having to drop out due to illness. Most of my illness my specialist says is related to stress, depression and loneliness. My specialist has encouraged me to look for a partner whom I can share my life with. The weather too hasn’t been kind to me. And after all these years I dread the winter period most.

I am currently receiving Income support, Housing Benefit and free bus pass, but still I don’t feel free from HIV. Unfortunately I wasn’t able to secure a future partner from the several support groups that I have attended. This is mainly due to the difference in UK culture and my culture. This forced me to travel to Sudan to look for a wife that is Muslim, who understands and respects our cultures and norms. I was successful in securing a beautiful wife and disclosed to her my HIV status. She accepted me as I am and we got married. I also told her about my son and she is willing to adopt and care for him. I thank Allah for everything. I was on holiday [in Sudan] with my wife and son for four months and promised to return for them soon after sorting out their travel documents.

I also long for the day when both Muslim and faith leaders can speak openly about HIV.

I am now going through yet another hurdle. I have to bring my family over to the UK. But because I am currently unemployed the process has been very slow and I worry that the Home Office might deny them their travel visas unless I can find a sponsor for them. My stress levels have gone up and I am currently on antidepressants. The biggest issue that keeps weighing me down is loneliness and isolation.

My advice to other HIV-positive Christians/Muslims is that we must obey God/Allah and follow his commandments. Otherwise God/Allah will punish us. As a Christian/Muslim you must live a good and moral life. Do not mess around with your life, because you have only one body and one chance to live a good life. Take responsibility should anything happen and disclose your HIV status to your partner.

Constantly go for medical check-ups and stick to one partner. But in the event that your test results come out positive, it is not the end of the world, especially if you are living in the UK.

Up to this very day I would never disclose my status to anybody apart from my wife, doctor and members of the support group. I long for the day when disclosing my HIV status to people would be like disclosing I have diabetes where people would be more sympathetic rather than disgusted and fearful of me. HIV is still very much considered a plague and people fear it.  

I also long for the day when both Muslim and faith leaders can speak openly about HIV. We Christians and Muslims depend on them so much for spiritual guidance and support.