Everyone faced difficulties and suffering at some point. Apart from an HIV diagnosis and illness, the kinds of problems people tried to cope with included:
- Relationship breakdowns and death of loved ones
- Loneliness and isolation
- Lack of housing
- Violence such as bullying, emotional abuse and war
- Lack of work
- Threat of deportation to country of origin and relocation (‘dispersal’) outside of London
- Drug and alcohol overuse
- Financial problems
People grapple with their difficulties in their own way, depending on who they are and the support they can get. But often our struggles are not fully understood by others.
Following on from his adoption he struggles to cope with the loss of people in his life. (Read by…
His male partner was deported and he felt it was difficult for others to understand his grief.
Being so young he felt that older people with HIV did not understand him.
Some people, especially some of the African people we interviewed, faced multiple difficulties, and yet they somehow struggle through. For instance, African women tend to see themselves as the ‘tent peg’ that holds families together in crisis. Feeling that they have to be strong for others sometimes helps them to get through difficulties.
Has to keep strong for her family despite multiple tragedies and becoming HIV positive. (Read by…
It was hard for many of the African men who were on benefits or were struggling to get work to cope with crises (see ‘Work and routine’). They believed that by not working they were looked down upon by others in their communities for not being ‘breadwinners’. “It’s not even lower class when you are on benefits. The best thing is to go out and work. Have a house, mortgage, loans and buy cars and enjoy life to the fullest,” said one man. Support groups for men could help men to cope with such pressures (see ‘Support groups’). But even Black African men who work can face difficulties.
Black African men work anti-social hours and face work-place discrimination. (Read by an actor.)
However, it was not just the African people we spoke to who faced multiple problems. One South American gay man said, “I didn’t have a job, I didn’t have a place to stay. I was very close to being an illegal immigrant, and there I was, HIV positive.”
Was facing multiple problems and was very angry.
There were two social situations in particular where people could feel overwhelmed: the loss of entire friendship networks to AIDS, and the problems of immigration for Africans with HIV in the UK. The people we talked to from Africa were often in the UK for holidays, education or short-term work when they became ill and were diagnosed with HIV. With the lack of access to adequate HIV treatment in many parts of Africa, many felt ‘stuck’ in the UK and faced deportation and potential death from AIDS back home. Many said that even in African countries where medication is available, not everyone could get it.
She is scared and feels trapped without work or benefits while her immigration matters are sorted…
She was dealing with many problems on top of being in a foreign country. (Read by an actor.)
African people who wanted asylum in the UK missed their families and friends back home. But they also wanted to convey their despair at the thought of being deported home to what they believed would be their death: “If I am sent back, that is just to go and die there, there is no two ways about it.” They also wanted others to understand their humiliation as people who wanted to work and “put something back into society,” but who were forced to wait for the outcome of their immigration cases: “Most of us are so depressed, we don’t know our fate.” “The waiting is very painful, very stressful. You just wait and you wait forever.” Waiting could be particularly frustrating for people with skills or professions that they had been able to use in their home country.
As a professional woman it is humiliating for her to be forced to live off little and not work. …
People who were seeking asylum also often felt they could not make complaints: “If, let’s say, we have a problem in our hotel, we have to keep quiet because we are still getting the medication. Sometimes the Bed & Breakfast is substandard. So we are stuck.” Another said, “Because we are asylum seekers, we have to take whatever we are given.”
Financially, many people had struggled or were struggling. In the 1980s and 1990s, some people spent all their savings and ran up big bills on their credit cards because they thought they would die early. One man had spent many years paying back all his debts.
Some African individuals were really struggling if they could not get work, they were too ill to work, or if their immigration problems meant they could not work legally. One woman sometimes couldn’t afford to get to her HIV clinic by public transport, and so the clinic helped to pay her fare.
Did not have enough food to eat with her medication. (Read by an actor.)
Lack of money can contribute to desperate situations.
Even people doing relatively well, e.g. who managed to get back into a job, could struggle. One man asked “I lost 10 years of financial security. Does the future hold chronic poverty for me?”
Through the improvement of treatments, HIV is now seen as a chronic condition, not a life-limiting one, and many people can now continue to work as before and may not need benefits. This was not always the case and people we spoke to in 2005 had different attitudes to benefits. Some felt they had earned them through paying taxes in the past, but others were very reluctant to get benefits: “I don’t see taxes as a savings plan,” said one man. One retired man said he initially felt that taking retirement was “cowardly” and he thought he should keep working until he ended up sick in hospital!
Some people talked about being in a “benefits trap”. A man who felt he had a good level of benefits resented being unable to get back into a job: “When you are HIV-positive, there is nothing to do. And if you had a career as fantastic as mine, you just feel like you’re placed on the scrapheap.” A professional man said he would not have enough money for his family if he did an unskilled job like cleaning.
Some people who once had well-paid jobs and who had retired were doing OK financially. Others really struggled. A long-term survivor on benefits said, “I have always lived on the breadline.” And benefits for people with HIV were thought to have become less generous in recent years. Some of the more recently diagnosed people we spoke to who were not working said they were really struggling on benefits.
Retirement has meant keeping busy while surviving on less money.
It is not easy applying for – or existing on – benefits.
The people we spoke to said that it is worth investing energy into sorting out your benefits and getting help from whoever you can, including unions, social workers, organisations like the Citizen’s Advice Bureau and advisors from HIV charities.
Felt he was badly advised and so missed out on medical retirement in 1990.
It may be worth appealing if you are turned down for benefits because appeals can succeed.
Facing life problems was a challenge, and yet most people felt they drew strength from facing up to their problems. By and large, people found ways to cope with their difficulties, for example:
- Finding ways to come to terms with loss; some people put a lot of effort into rebuilding their friendship circle if they had lost friends.
- People did courses and training to get jobs, or did voluntary work
- Many gay men moved to London from towns and villages so that they could be more open about their sexuality
- Many African people put a lot of work into finding their solicitors, and then helped their solicitors put together their cases for asylum
- Accepting help and support from professionals, family and friends