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HIV

HIV, money & other problems

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 re-location ('dispersal') outside of London
  • Drug and alcohol overuse
  • Stigma
  • 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...

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Age at interview: 52
Sex: Male
Age at diagnosis: 42
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Ah yeah, well that is something I've never been able to come to terms with. People [pause]… there might be something in my psyche that pushes people away; this is an individual thing. It's got nothing to do with anybody else, you know, but I have never been able to cope with the fact that people leave you, people who are supposed to be close and special, and role models, all sorts of things. 

The first one, of course, was my own mother. Although I don't really… it's not, it's not high on my agenda really, I don't think, think about it or anything, I do get a little bit upset when people are talking about their families, and I've got no real family as such to talk about. 

[sigh] I get a little bit sort of, I show a little bit of angst when a doctor says, 'Is there any diabetes or anything in your family?' and I get a little bit aggressive sometimes and I think, 'No, no, well of course not, I'm fucking adopted' you know, so there is no… there is no particular roots there, there's nothing that I can fall back on, nothing I can look at, I've got no past. That is a problem. Although I, you know, it's not, it's not, it's not a big problem in my life, it used to be.

 

His male partner was deported and he felt it was difficult for others to understand his grief.

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Age at interview: 41
Sex: Male
Age at diagnosis: 34
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And we had, you know, we had a really good time, travelled, went on holiday, took him home to meet my parents. There was a sort of a coming out stage and that, this is my boyfriend, this is who I love, this is the most important person in my life at this point in time. And then he got deported.

Because he didn't have a Visa. That was heart wrenching. I remember, it was the 26th September when he was flown back from Heathrow. And that was like, you know, it was like somebody had died. You just, I think I cried for days. And it was very difficult because nobody understood. 

Why didn't they understand? 

I think because they didn't give' people don't think of gay relationships as having the same sort of mental process as a straight relationship. We don't have feelings, you can meet somebody else tomorrow or whatever. But this was a major part of my life. It had just been totally disrupted and ended and gone. And your family don't understand because they don't really want to talk about it. If it was my sister's husband that had left, everybody would all mother her, cuddle up and we can get through this and whatever. But you are very much left on your own. I think people don't know how to react or what they should say or not say so better off just to leave you alone. So that was pretty horrendous. 

 

Being so young he felt that older people with HIV did not understand him.

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Age at interview: 26
Sex: Male
Age at diagnosis: 17
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I mean the first year of diagnosis I kind of went a little bit off the rails, I drank too much alcohol. You know it was hard to cope with at the time and, the agencies that I'd go and attend in London, for young people. They just wouldn't be there. They were just' services weren't there, so I'd be the only younger person amongst a whole group and then, you know you find there'd be some stigma from certain people because of your age. Like the attitude would be, oh you should know better. Or what are you doing here. We didn't have all the campaigns and the funding and services you know when it first arrived in the early 80s and that's why the older generation got HIV. So they were' it was kind of' it was a strange dynamic to be dealing with and talking about issues. And I'd be in a group and everybody would be talking about how do I go back to work. And I'd be like how am I going to go back to school and finish my A level's. You know so the issues were completely different. 

There'd be situations where you felt judged because you were young and positive. And that can be quite you know hard or you know difficult on the, on your psyche, on the way you view life and what you're doing.

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...

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Age at interview: 44
Sex: Female
Age at diagnosis: 44
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I… we migrated here, it was about 5 years back, now. 5, 6 years back. I've lived all my life like in Africa. Except for once I came here to study, about 2 or 3 years. 

I went back home. Had a job. Was married, but unfortunately my husband died in 1999, in an accident. 

And then that's when I decided to relocate. I came here, got a job as a nurse and started working. No problems at all. I've got one child, and she's 18 years old. Had 2 miscarriages after that back home in Africa… I suppose… [sighs] if I go to my background, I've had a few tragedies in my family. And that has made me strong… Because sometimes you see your family crumbling down like that. And you, you've just got to stand strong, to keep it going. I'm the first born in my family. And I've gone through quite a number of tragedies that have hit me right and left. Like for instance in 1998 I lost my father through a bad car accident. And I'm the first born in the family, as I say. I had to keep on strong. I had to be strong for the others. And within, within I think 8 months… Within a year, I lost my husband. 

So I lost 2 most important people in my life. And I kept on pushing and saying, 'I need to go on, I need to, I need to push on.' So I suppose it's that same, that same… So it's that same thing that's kept me going. And I've said, 'Oh, come on, yes, this is HIV, I'm HIV positive, but I've got to keep on strong.'

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 another 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.)

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Age at interview: 46
Sex: Male
Age at diagnosis: 40
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You get, as I said, then you can get training, then you can get... then you can get employment... employed. Yes it is, it is a, it is a very, you know this, that could be also another reason. Some of them have got odd jobs out there. 

Sometimes when we organise support groups they can't come because they're going to work… and then the work they do at very odd times actually. Some of the work they do are very… are very anti-social hours you know. Some of them work overnight you know. Some of them do cabby, some of them are security work, you... you... you work, some of them work Saturday and Sundays, yeah. 

Then when you organise something they say they are not able to come... to get the proper mainstream jobs with the stigma and the prejudice and the discrimination, some of them are not… they are not able to. Well no it's across the board but at some point you find it's more... sometimes you know... minorities… Africans. But it's across the board, regardless, yeah. 

Because now when you get, you get employed you, they've got to know or understand... someone is employed... has got... in place for HIV positive people, who do understand about the HIV issues. Because some of them can be very, very, very, aggressive they… If they knew you can get sacked... employer knows you are HIV positive the stigma and discrim, the prejudice is out there... 

People have been sacked… Assess the situation before you can, you can disclose. 

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.

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Age at interview: 38
Sex: Male
Age at diagnosis: 24
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And then, it was then that, it wasn't just the sort of reaction to the HIV, the denial about the HIV coming in, that so many other issues came up. I was just furiously angry. I just' anger, the anger I felt and'

It was all this bottled up' as much as I hate to use the term, it is a very accurate, it was sort of self loathing. You know all this bottled up aggression against myself, about being gay actually you know, and about then my failure, what I perceived as my failures. Seeing as I've been such a failure in so many ways. And then just like fury at people who I thought should have been there to protect me and I'd perceived as not doing it. And just yeah, real, real anger. 

And I was just like I haven't got a job, you know I've got no money, and I've got a terminal illness you know.

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...

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Age at interview: 35
Sex: Female
Age at diagnosis: 33
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And I'm really, really, real, really scared because, if anything, if I'm sent back home, I'm just sent back home to die. I don't know if my application will be considered, and new laws keep changing, new things keep changing, and say the Home Office say no, I'd have to go back, there is medication in your country, there is that. 

And another thing, I overstayed my visa. And there was a time I was destitute, I didn't have anywhere to stay. I went to the social service in the area I live, and they said I'm over age.

Well what I, what I find out is… like I keep telling all these support groups, if you're, if you are HIV positive, no matter what your status is, if you have children, they give… there is consideration for people with children, than you be single. That is what I just find out. And they keep saying it's not... but that is the truth. If I have a children, and I'm HIV positive, I would have been able to get something.

And why, and why can't you get any benefits?

Because I go and they told me that… They keep telling me oh yeah, there, there… and I'm fed up with it. I don't have social service… I don't get anything. I'm not bothered about that, I don't want to live on the… apart from the medication, I don't want to live on charity. I don't I… and as the system is... formerly like two years ago, if you're HIV positive Home Office, if you're OK… if you're able to work, they will give you a permit to work. But as it is now, what they are saying is… if you are healthy enough to work, then you can go back to your country of origin and work and pay for your medication. So it's two edged sword.

 

She was dealing with many problems on top of being in a foreign country. (Read by an actor.)

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Age at interview: 30
Sex: Female
Age at diagnosis: 29
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Because at that time I was trying to cope with settling here… trying to settle here. I had lost my husband. I was sick. I was stressed. I was… the world, everything around me was just… I had no job, I'd left my children back home. I had just my sister here who was… who is also, who was about to leave her husband. And things were just upside down. So my… I was kind of very stressed. I lost my appetite, so I lost my weight. When I got here I was about, around 65 kilograms. Then when I got onto treatment I went down to about 52 kilograms at one time yeah. Then it started picking up, right now I'm around 60.

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. ...

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Age at interview: 45
Sex: Female
Age at diagnosis: 42
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We getting free medication. That is why the government is calling us health tourists. Most of us like she said we are professional people. 

Initially when we came here, we did not think we would fall sick. We came here for greener pastures. Especially since we came from Africa where the political situation has turned bad. So we just thought when we came here we develop ourselves. I am speaking for myself. I didn't want to live in this country. I wanted to do my studies then go back home, but apparently when I was doing my studies, that's when I fell sick. 

When I ended up in this situation where I am trapped. I am not allowed to work… The situation is we are not used to getting food handouts. We are hard working people. We are not used to getting vouchers and staying in the house 24/7. It's actually humiliating… It is so humiliating. Especially when you have been working. And providing for your own family and doing things for yourself. 

Well some of us were breadwinners! Now we have to rely on like £60 in 2 weeks. You don't get cash. It depends on the borough you are in. 

Some boroughs give you cash, some boroughs they don't. And you get food vouchers, with no money to buy… not even… I mean in our culture, we have our traditional meal. And with these vouchers now when I go to Sainsbury's I can't get maize meal. And I need the cash to go and buy maize meal. So all of this… people are really stressed.

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.'

Finances

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 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. One woman sometimes couldn't afford to get to her HIV clinic by public transport, and so the clinic had to pay her fare. 

 

Did not have enough food to eat with her medication. (Read by an actor.)

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Age at interview: 49
Sex: Female
Age at diagnosis: 45
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But when they put me on the, on the, they when they, they started me on the drugs.

Couldn't, I couldn't, I don't know what happened, I kept on vomiting, yeah. And with the infection I had with this… with the… with the… with the salivary gland and I had, I was taking antibiotics as well. 

Then I started with this, with the drugs also, HIV drugs, I could not, it couldn't go into my stomach, I could vomit and I have yeah, diarrhoea and I… did not know that with the… the doctor told me I had to swallow the tablets with the food. I did not have enough food to eat. Yes, so you take it on an empty stomach. It was bad, I ended up in the hospital several times.

 
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Lack of money can contribute to desperate situations.

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Age at interview: 51
Sex: Female
Age at diagnosis: 47
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People get desperate situations where you think… You want undergarments right. You know these tablets we are taking; they make you develop in different places where you normally don't develop, you put on weight. I wasn't this fat, but because of the tablets I am taking the fat has been redistributed to certain areas. Therefore I need a change of clothes and everything, which I can't afford, I can't buy anything. It is all from 10 years ago. And I know I need to buy something that looks smart, because if you are ill, it doesn't mean you have to be dirty or you know…whatever. You have to be smart, you have to make an effort. But how do you make the effort? You can't go to the hairdressers, you can't go except those who can do their own hair. I can do my own hair now, but in the first year, I could not do that, I had to do my own hair. Now I can. So it's another stumbling block among a lot of stumbling blocks.

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?' 

Getting benefits

HIV is now seen (through the improvement of treatments) 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. People who were on benefits were often also doing voluntary work to keep active and give something back to society (see GOV.UK for more details on benefits).

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.

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Age at interview: 52
Sex: Male
Age at diagnosis: 44
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I mean you don't have as much money as either of us did when we were both working, but we have far less stress and far more time available. And also, with my other half's other problems, I mean apart from anything else he's got his dialysis, with renal failure, he has that three times a week. We've got a machine upstairs in the spare bedroom. So I mean, I've got a part time job basically looking after his dialysis. It works out at something over just over 20 hours a week anyway doing that. But that's divided up into four segments. So I mean you know, the' there's quite a bit going on plus innumerable trips to and from various clinics for him and tests and heaven knows what else. Plus a certain amount of trips to and from the clinic for myself as well. So I mean, it's not a life of sort of lying out on the sun lounger in the garden all summer, we're quite busy for most of the week.

 

It is not easy applying for - or existing on - benefits.

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Age at interview: 37
Sex: Male
Age at diagnosis: 36
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Well for me it just involved talking to people from the CAB, Citizens' Advice Bureau. And what they were saying was pretty much, you know, common sense stuff anyway, that I could have done anyway. So while you're waiting that two week period to see them, you could have got the ball rolling anyway. So, as far as that's concerned that was, that was hard, you know, because it meant another two weeks without cash coming in. 

It's hard, really hard. It's '71 a week, and you're paid fortnightly and, you know, this is the hardest time of year really, because you've got your gas bill, your electric bill, your water rates, you've got your TV licence, you know, everything has come in, and it's tough.

I'm not 100% with it all so far, but you have to be on you know, the '71 benefit for a certain amount of weeks before you qualify for a higher rate of it. And also you can apply for, I think it's called DLA (Disability Living Allowance), which is like an assisted sort of care component I think it is. But it's all just a bit of a minefield you know, the CAB have been good, and they've filled out what I need to do, but it's just the waiting game now, for it all to come in.

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.

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Age at interview: 38
Sex: Male
Age at diagnosis: 24
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And you know' and it was certain I was going to get made redundant, and I'd been there three years, and I was going to get a month's salary for each year of completed service plus '2,000 plus all my pension contributions back because hey what did need a pension for, I was going to die, I had AIDS. In actual fact it was, you know, what I should have been was medically retired, and I had no idea of this at the time, that you know' I fulfilled all the criteria for medical retirement because what happened was when my sick pay ran out, they told me we're going to make you redundant. And in fact what they should have done and even though I was a member of a union' crap that was. I should have been referred to an occupational health doctor and been medically retired because I would have got a very, very good pension from' which I'd still have now, you know. It's retained for life because it was based, well it was a final salary pension scheme and I was on, in, that was 1990, I was already on '22,000.

 

It may be worth appealing if you are turned down for benefits because appeals can succeed.

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Age at interview: 39
Sex: Male
Age at diagnosis: 20
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I've done benefits advice with people. And appeals and stuff. And I mean it is harder now for people to get state benefits. But the benefits are still there if people need them. However you do get some agencies who are a little bit negative. Or, 'Well, it's not worth trying, you won't get it.' I did apply for disabled living allowance. And I was turned down. And that was when I was working. And I thought, well, I don't need it, really. I was entitled to it. Because, because of the mobility problems. And' [sighs] And then I applied for it again, and got turned down again. And I thought, well, I don't need it. And I'm too busy to really worry about appealing. And then I applied for it a third time. And this was when I'd had to give up full-time work. And my mobility problems were' certainly warranted getting it.

And they turned me down. So I thought, right, I'll appeal. And all I did was I wrote them a stroppy letter. Basically saying, 'How dare you turn me down?'

And that was the additional information they got. They looked at it again. Which means somebody else looked at my application again. And gave me the benefits. Not because anything had changed. 

Just because somebody else had looked at the paperwork. And that's the problem.

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
 

Believes that black African men are accessing services more and getting more support. (Read by an...

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Age at interview: 46
Sex: Male
Age at diagnosis: 40
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In the current scene you're seeing that the support and help and services are being given more to African women. But, it's changing. It's very different the… the impact is different now out there. 

The African men have come out and they have seen for themselves that really by coming out… and getting, accessing these services, getting involved, participating you know. Then they get to, they're now getting to know a little bit more about the services, they're getting more informed you know. 

The resources are being put into, you know, the kind of thing you get... facilities, a bit of funding resource, support, you're getting from professionals and from funders you know. You see that change and as a result of that they're getting more help, the African men. They're getting more support and moving on. They're accessing more services you see. And they are, they're getting training they're getting employed.

Last reviewed May 2017.

Last updated May 2017.

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