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Work & HIV

Not everyone can choose to work. For instance, some people could not work because of immigration reasons, such as the restrictions affecting asylum-seekers. And others were not well enough to work. In the early days (1980s and early 90s) people with HIV were sometimes advised to stop work on the basis of illness and sign on for various state benefits. Anti-HIV treatments are now so successful that many people with HIV keep working or want to return to work. 

But being HIV positive often makes people think about their work life. Not everyone was lucky enough to work in an environment that was helpful if you had problems with HIV. People we talked to included those who had stuck with their jobs, changed jobs, reduced their working hours, stopped work or took early retirement.

 

He wanted to go on working but his old career was very demanding. He is unsure what he could cope...

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Age at interview: 48
Sex: Male
Age at diagnosis: 32
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And you know health wise I am thinking well what have I got to do, here I am, I'm you know I am not working. I'm you know feeling better now with the medication. I don't know you know, it has its benefits in one way, but I couldn't go back and do the stage work. I wouldn't have' I can't do a show eight times a week. It is just too much, it is just too difficult, because some mornings I get up and is just you just you know, I may look fine now, but I have days when I don't want to get out of bed you know. What I mean is that's just the way it feels. But on the whole I feel good and it is fine but a lot of the' you don't know whether it's psychological thing you know. I had a lot of anxiety and depression but a lot of that was because I couldn't work, and I wanted to work, and you know, you just think well what' you know what do I do now? All of a sudden I have dealt with the fact that I was told I had two years to live, that is the way things were going. I got past that and 10, 15 years past that now.

For many people, working is a central part of who they are, and a source of self-esteem. Not being able to work, whether because of ill-health or legal restrictions because of immigration and rules affecting asylum-seekers, can be distressing. Among African men, for example, there are especially strong expectations on men to work and provide for their families. Migrants, both women and men, are often highly educated and qualified, but face problems having their qualifications recognised in this country.

 

African men can find it particularly difficult when they cannot work. (Read by an actor.)

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Age at interview: 45
Sex: Female
Age at diagnosis: 42
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For instance, we were professional people… professional people right and when we came here I had reached the highest level of my profession. When I came here, everything went right down to the very basic. 

And I am living on vouchers. I have never had to think about how much do I spend to buy this and what have you. And half the time, I don't even have the money to buy anything. 

So I mean that… when it applies to the men, because the man thinks of his wife and his children. In our African culture, the man is supposed to be responsible for his family, the breadwinner. Whether he is good at it or not, but he is responsible for his family. 

Whereas the woman takes a subservient role in the family really. But that is why men really find it very difficult… Because the child will be saying I want this, I want that. I want shoes. The woman would be saying you are the man of the house, you must do this and that. And at the end of the day he can't do anything. He has got no money. That is why they feel so stressed out.

Some people were determined to carry on with work despite their fears, treatment side effects and even being ill. One man who had just begun anti-HIV treatment said: 'I just wanted to sleep all day long… I didn't take any time off work because I think that could make you worse.' People had different reasons for continuing work including a strong work ethic, needing to provide for themselves and their families, fears of being 'on the scrap heap' and liking their work. Some believed that you should not 'opt out' of work if you can avoid it. It was easier for those who were diagnosed before they got ill to keep working. It was also easier for those who enjoyed their work, worked in good-conditions and were well-paid to keep working: 'Work's very challenging… It's keeping your mind in a good place,' said one man. 

 

He loves his work but thinks that some people with a HIV diagnosis opt out of work or become...

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Age at interview: 38
Sex: Male
Age at diagnosis: 35
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And then some of friends, when they had the HIV diagnosis… they were able to… really abdicate responsibility in some way, and just push it all over onto that. And some of them went, went down the… the benefit route and kind of opted out. 

So they were able to say, 'I'm not doing my job anymore, I'm not doing that house. I'm going to go and get some social housing, get the car, get everything else, just kind of opt out of that.' But no, that, that's not something personally I would want to do. I don't see, I don't see the taxes as being a savings plan [laughs]. It's be quite nice if they were, but no. 

But there's sort of some who kind of opted out altogether. Which I think is… nowadays is harder to do. Because of the changes. Other ones went into this kind of anger… It's a bit like a grieving, I think. I've seen… Well, I've seen my friends, and when I've had… family die, it's that kind of… you know, the, the disbelief, the acceptance, the anger, all these different phases. 

And that… I think it's very similar. I think any shock is probably the same. So there's lots of friends who have come out of it. But some friends seem to be stuck in it, and haven't been able to move on from, from particular, a particular stage they've got in to. But because I've… I'm really… I love my work. I'm really happy in my work. It goes really well. I love doing it. 

Work could also provide a helpful short-term distraction from worries. One man first dealt with his HIV diagnosis by throwing himself 'Into work… it did actually sustain me for a long time,' and confronted his diagnosis later when he was ready. However some people who tried to work eventually found they couldn't: 'I carried on working for about a year, then my health deteriorated quite a bit, and I had to go on therapies… and other things made it imperative that I stop working and devote more time to home,' said another man.

Illness or the threat of illness meant that some people stopped work: 'Five or six friends of mine died in the early days of AIDS when they were totally stressed out with work,' said one man who decided to stop work early in the HIV crisis. 

One man who had been ill with AIDS said that people around him told him to 'take it easy because I had been through so much,' and he went along with this advice until he felt stronger: 'I have always been one of these people who believe you should work.' 

People sometimes felt they were not well enough to work: 'I am still not capable of doing a 5 day week,' said one man. Where possible these people worked part-time or slowly tried to build towards doing more work. But financial problems and benefit rules can make it hard for people to increase their work-loads.

 

While not being well enough to work full-time he has done a range of courses and interesting jobs.

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Age at interview: 39
Sex: Male
Age at diagnosis: 20
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I do get very frustrated that I don't always have the energy to do what I want to do. I haven't been able to work full-time for a few years. Which, again, I find that frustrating. But' I've thought, well, OK, if I can't work full-time I'll do stuff that interests me. So I do independent work as a clinical nurse specialist. I've worked in a' recently in a psychosexual clinic, which was very interesting. I was having hypnotherapy at one point. And I thought, ooh, this could be useful. And at the same point in time my hypnotherapist said to me, 'I think you'd make a good hypnotherapist. Would you like a scholarship? I think I can arrange it.' So I now do hypnotherapy. I'm a qualified hypnotherapist. So the spare time that I've got through not working, I've actually put to fairly good use. I decided' I, I helped to set up a hydrotherapy unit. And I was working in a hydrotherapy unit. And that has now closed, unfortunately. But I decided to formalise the massage experience I got. So I did a massage diploma. So I'm now a qualified masseur as well.

Several people admitted pushing themselves with too much work, working long hours, doing jobs they hated because of the money or even being 'workaholics'. Some of these people believed that the stress from overwork could damage their immune system and health, including their mental health. But stress did not always harm people's immunity. One man who did a lot of voluntary work and had never been on medication said: 'Maybe I live off stress? At the moment my last T Cell count was 750.' 

 

Being a senior teacher was very stressful, his health suffered and he had a 'breakdown'.

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Age at interview: 57
Sex: Male
Age at diagnosis: 39
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I see that the immune system is the problem, with the virus. And if you live calm, ordinary, well secured life, then everything is fine. But if you start putting school inspections into the equation. In, you know, in the state schools like OFSTED, or in the private schools, the private school equivalent of OFSTED. And then you put parents evening. And then you put end of term reports. And then you put the whole thing that goes into education, which when you're 24, 25, 30 you've got the energy to cope with. When you are in your 40s, you haven't got that sort of energy. And round and round it went and eventually I just completely fell apart. I did. And that was about 10 years ago.

Even with effective HIV treatments some people still feared that work stress was deadly and thought that not working keeps you healthy but living with HIV does not automatically make you eligible for any benefits. Some worried about being trapped on benefits, but others pointed out that you have a legal right to claim benefits and should feel entitled to make claims. Some people feared they might not get the same level of benefits if they went back to work and became ill again.

 
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Work stress coincided with his illnesses and he decided to retrain for work that interested him.

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Age at interview: 37
Sex: Male
Age at diagnosis: 24
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And so I started to' think Okay. I am getting better, I'm getting physically active what do I want to do now? I'd left the job I'd been in for the previous five years which was in the film industry, which was very stressful and the year before I had been hospitalised for three times and after the third time I said okay that is enough. I am quitting I can't work any more this is too much. The three hospitalisations also coincided with very busy periods at work' we would have a very big rush on with a very big film. I would get everything done I would do all of my job I would it perfectly and then the week after the film was released Bang I would be in hospital. And that happened three times and the third time I said no this is silly, this is no good' and at that point it was like well you have got to stop here anyway. So I was out of work, I was on full benefits I did not know what to do with myself. And so I sat down with friends and said well what can I do? What is going to be good for me? What do I want to do? And I literally sat down with Floodlight, the listings for all of the adult education things, all the courses are on it, and I went from A-Z and I crossed out all of the ones that did not interest me and then I took out' I had made a list of every single subject that was in there that appealed to me on any kind of level, and I whittled that down to eventually about 20 subjects. And then thought about okay what when I see it, what just makes me smile just the thought of doing that?

Not working had mixed results including getting more rest, reducing stress, increasing stress, financial problems, feeling guilty, boredom and depression. Work provides most people with structure and routine as well as money. The removal of daily work routines and responsibilities could be a problem. One man said, 'I would do nothing and it was soul destroying in its own right.'

 

When he was diagnosed with HIV early on in the epidemic he had good sickness benefits from work...

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Age at interview: 38
Sex: Male
Age at diagnosis: 24
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Because it was the first summer in my life I'd never had any responsibility. I'd never had to like revise for exams or think about getting work. It was the first time in my life actually that I had a sustained period of time off. Another thing, you know, during my summer holidays at university I'd worked you know and I'd' from when I was 16 I'd had a Saturday job and I'd like done, you know and it was like I don't have to do anything, I have to do absolutely nothing. And work is paying me to do this because I'd like' you know I think I had entitlement to, I'd been there for three years, I had very good sick pay entitlement and it was just great you know. And you know I can remember that feeling on a nice warm summer evening of thinking this is great, I don't have to go to work tomorrow.

Given that 'doing nothing' could be stressful, people not in paid work often looked for other ways to stay active. Developing a routine also helped people cope e.g. by looking after other people's children, doing creative art, reading, doing courses, going to gym and even moving to London or another major city' 'London was the answer… It didn't give me time to dwell on anything,' said one man. And a woman said' 'I like shops a lot… I am laughing because I don't have much money… I just look around, I like the environment, it's nice.' 

People also did all kinds of voluntary work including HIV counselling, running patient groups at HIV clinics, caring for animals, walking children to school and providing food through the 'Food Chain' to people who were ill. Those who didn't find their work enjoyable could sometimes find pleasure outside of work or by retraining for a different career.

 

She is busy going to college, support groups and volunteering to help her friend. (Read by an...

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Age at interview: 30
Sex: Female
Age at diagnosis: 29
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I'm going to college and I try to, I'm help… I volunteer to help my friend take her children to school. And I take them to school, sometimes I bring them back home, I help them with their homework. Take them to the park. Yeah I try to keep busy, when they're at work, I'm there at home with the children. 

When they're in, if I'm going out to some other organisations where I have to go for the support groups, I go out, they remain in with the children. So we kind of support each other, help each other. And I kind of keep myself busy and when I'm going to school, I leave the children in school, If I'm going to school I come and pick them up. 

So I kind of… I'm kind of on a, a busy programme. And I do a bit of knitting as well. And I do a bit of hair braiding.

 

Wants to do work that is enjoyable and benefits people. (Read by an actor.)

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Age at interview: 33
Sex: Female
Age at diagnosis: 27
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And then it's stressful as well cos people… I find… I think there are lots of people in jobs that don't really like what they're doing because of the pay, because of the money. So again, that's another thing I've changed, if I'm going to be going into a full employment now it will… must be something that I enjoy doing and also where I sort of improve people's lives in some way or change… So I'll probably, I can easily find myself working in a charity, yeah, where there are benefits to people, yeah.

 

He is enjoying his retirement and has enrolled on a full time pottery course.

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Age at interview: 63
Sex: Male
Age at diagnosis: 48
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I mean I love retire, retirement. I've got lots of interests, in the arts and the garden in the house and friends too. I do a lot of cooking and entertaining and travel to visit friends. We have friends come to stay with us here in London and we go to visit friends in lovely places in the world. 

And I'm going to pottery classes and, and I'm really enjoying that, I've always loved and collected ceramics and, and I thought well, I could go to an evening class and the tutor when I went... said well if you're retired, why don't you come to a structured course that lasts all day. And I thought, that's a bit brave but yes, and I've been doing it now for two years.

Oh I want to make something beautiful. A thing, I want, I want, I'd love to... do things that I'm proud of, I haven't yet. I'm being good and doing as I'm told and following the course and so on, which isn't always things I think are, even potentially beautiful. But yes I, one day, I shall get my own wings and, that would please me enormously to do something I was proud of. I've done a few things I like, but nothing I'm proud of yet.

One problem for people we interviewed who had given up work because of HIV (or never worked) was that they could have long periods of not working on their CV that could be hard to explain to potential employers. The thought of working can also be scary, but support, training and education is available to help people get back into the workforce. Some people find that doing voluntary activities can help rebuild confidence and be a 'stepping-stone' back into paid work.

We were also told that returning to work by registering with an employment agency is another way to get back into a job. You have more control over what work you will do than when applying for a regular job. You can choose what work to register for and decide whether to accept a job, the number of hours and days you will work and the pay you will accept. There are relatively few questions to answer from either the agency or the workplace manager. Such work can lead to an offer of permanent work, gets you work experience and can improve your skills and confidence. However there are downsides, including uncertainty.

The Equality Act came into force on the 1st of October 2010. The Equality Act builds upon the existing protections that were in place under the Disability Discrimination Act.  “The act replaced previous anti-discrimination laws with a single act to make the law simpler and to remove inconsistencies. This makes the law easier for people to understand and comply with. The act also strengthened protection in some situations” Home Office. 

Last reviewed May 2017.

Last updated May 2017.

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