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HIV & mental health

Depression and anxiety were common problems for the people we interviewed. Depression affects the way you think, your feelings, behaviour and physical wellbeing. Depressed people can feel sad, lose interest in life and lack energy. They may also feel guilty and worthless, lack confidence, have poor concentration, sleep badly, feel fearful and have thoughts of suicide. A number of people pointed out that depression can creep up on you, so your friends may notice your depression before you do.

People also talked about other problems including grief, loneliness, insomnia, isolation, manic-depression, phobias (e.g. of leaving the house), panic attacks and being suicidal. 

The World Health Organisation says that mental health is: 'A state of well-being in which the individual realises his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community.' (May 2017) Mental health problems involve the lack or loss of these abilities. Nearly everyone we talked to faced such issues at one time or another and many said there should be no shame in having an emotional problem.

Why people have problems feeling good

Even if people could not understand their problems at the time, they usually gave reasons for their difficulties. Some people had a family history of emotional problems and most people's stories described how life problems affected their well-being. When problems multiplied or seemed overwhelming, their health could suffer. One man said, 'I mean I just cracked up. I just found I had too much stress for too long, from too many sources.' 

 

He cannot feel good about himself when he faces so many problems.

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Age at interview: 49
Sex: Male
Age at diagnosis: 28
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I think that deep down inside you know the negative part of me thinks that I am a failure. I have not got a job, I have no qualifications, I am on benefits, I am long-term sick, I am in and out of depression. [ugh] I can't really socialise quite well, so I become more introverted rather than being the extrovert that I used to be. Maybe that is financial as well, maybe that blends in with the finances because if I could afford to go out and have a drink now and again maybe I would get social [laughs].
 

People talked about a number of different things that made them feel depressed or anxious including:

  • Being diagnosed with HIV
  • Physical illness and side effects of drugs
  • The difficulties of managing life with HIV
  • Loss of family, friends and partners (e.g. relationship break-ups)
  • Problems with growing up and dysfunction in the family
  • Dealing with sexuality issues including homophobia and 'coming out'
  • Problems with immigration
  • Low self-esteem
  • Money problems
  • Poor housing and physical environments
  • Winter
  • Dealing with aspects of getting older
  • Isolation and lack of meaningful social activities
  • Feeling different and not 'fitting in'
  • When drug or alcohol use changes from being recreational to a way of dealing with life's problems.
 

HIV is difficult to manage.

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Age at interview: 26
Sex: Male
Age at diagnosis: 17
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How do I tell my partners? How do I live a normal life? Can I live a normal life anymore? And these are real questions that, you know I still deal with today you know and it, people think living with HIV today is manageable. There is absolutely nothing manageable about living with this virus. People who are telling you that, they're either doctors or the professionals, they're not living with the virus every day, day-in, day-out. There's nothing manageable about it, the possibility of infecting somebody you care about or you love is always ongoing. There's nothing manageable about that risk factor. And that really annoys me you know because it's, it, yeah, [sighs] yeah just, I don't want to be rude, it pisses me off, it really is. Because it's not, you know there's just nothing easy about living with HIV.

 
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Had panic attacks and became suicidal when taking anti-HIV drugs.

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Age at interview: 39
Sex: Male
Age at diagnosis: 28
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The medication reached my nervous system. And I became suicidal overnight. So the anxiety, the panic attacks. My chest, if  you had your hand rested on top of my chest, you'd feel the heat. This area was on fire… on fire. If you like [clears throat]... So I went to the clinic and said, 'You need to see me.' Spoke to my doctor. I said, 'That's how I feel. You know me. You have known me for years. That's not me. I'm going to kill myself. I don't… I can not handle it.' So I said, 'I'm going to kill myself', [laughs] I had nurses, psychologists… well, you name it. Everyone involved in the clinic came into the room with me. And I became very, very ill, emotionally. So when the doctor saw me, he said, 'I'm so sorry. You are having a reaction that happens to one out of 10,000 people. You haven't been blessed.' Off the medication (efavirenz). What can you do? You must go to the counsellor straightaway. You go in and talk to some of the NHS counsellors…

 

He felt different, anxious and isolated from an early age.

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Age at interview: 38
Sex: Male
Age at diagnosis: 24
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I think it was just like as early as like four, and things like that, I really liked dressing up. And you know there was a real' I did have a real sense of not being quite the same as the kids in my class at school and things like that. I mean part of it was because I was left handed and that made me stand out. I had to wear glasses, again that made me stand out. And it was like you know back in the 1970s and it was like National Health glasses and which' break so often. But you know, they would, it made you stand out even further. I was very nervous, and didn't find it very easy to integrate either with like sort of my peer group at school, that's another memory. We lived out, we didn't live in a sort of urban area, we lived slightly outside. I come from [small city] and we lived about six or seven miles outside [small city], and there weren't many other kids around my age to associate with and things like that.

 

Describes what happened when he used recreational drugs to treat his depression.

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Age at interview: 48
Sex: Male
Age at diagnosis: 32
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I just hit a low you know which we all do. This just got lower than most people I think. I definitely went lower than I should have. 

So I started to use drugs more than I had, and not just recreationally, but just for every day. And I was using Speed, and cocaine just to get through the day. I had never used this before, and I was using it as an antidepressant. You know to try and function, so stupidly then you know continued that. And friends were concerned they got very concerned because I wasn't acting in the right way, and I was acting badly you know. Just, just unreliable, irresponsible'

 
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He became addicted to heroin when he could not find a job.

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Age at interview: 47
Sex: Male
Age at diagnosis: 41
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And my first experiment with drugs was in, in the war where a lot of people took drugs to relieve yourself. To, because of conditions, it's not very good conditions, and I started to do it there first time' But you know I wasn't addicted when I was in this war. But when I left my military career I was so disappointed of nothing to do because I couldn't find a proper job. And so I felt myself so unhappy. And I'd met a lot of friends from my twenties, early twenties and it's' They were mainly all addicted people and it happened very quickly, I became addicted as well. It was hell. And I just wanted to escape from this hell. 

Compared to white people born in the UK, people from black and minority ethnic backgrounds often face more pressures. Black Africans we spoke to had a range of extraordinary pressures to deal with including asylum seeking, financial problems, difficulties in getting work and cultural differences.

 

Sees people as more isolated in the UK and misses her extended family ties in Africa. (Read by an...

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Age at interview: 35
Sex: Female
Age at diagnosis: 33
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There is so much choice here in the UK and loneliness. Even in midst of people. Apart from HIV, only HIV. In England there is so much loneliness, people don't have time for people. Even families don't have time, there is too much stress. Trying to meet up, trying to meet up, there is too much stress. In midst of people, even within… if you have an immediate family you could still be lonely. And in Africa we don't have that kind of set up. People keep too much to their self here. People don't care what is happening to their relative or their neighbour. They have… the family tie, there is no family ties in England. There is none.

 

She faced multiple life problems including asylum seeking, lack of work and separation from her...

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Age at interview: 30
Sex: Female
Age at diagnosis: 29
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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 was 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… 

But my problem is on, I still have problems with settlement because I'm still trying to settle, I haven't completely settled… I'm not yet settled, I mean as far as immi… my immigration, I'm, yeah. I'm still working on my immigration because I'm still waiting for some documentation to come from back home so that my solicitors can work on. So that's still quite giving pressure on me.

It is more difficult to look after yourself when you have a mental health problem. Many people also thought that too much stress was not good for your immune system once you had HIV. While some people found it hard to ask for help, people frequently needed help to overcome their emotional difficulties.

 

His senior position in a school was very stressful and his mental and physical health suffered.

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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.

Who can help?

Either the GP or the HIV doctor is a good place to start. Doctors can prescribe medication for mental health problems (e.g. an antidepressant), discuss options available, mobilise more support within the health system (e.g. psychiatrists), sign a person off work, and some have good counselling skills. A range of other professionals can also help. For instance, HIV clinics and hospitals usually have counsellors, nurses and social workers available in who can help.

 

Talking to a nurse about her fever helped her to overcome her depressed state. (Read by an actor.)

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Age at interview: 44
Sex: Female
Age at diagnosis: 44
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While I was in hospital they couldn't put a finger on why I had a fever. And that night… Because they said, 'We can't let you go home unless your pyrexia's settled down.' I just got so depressed. So I started crying that day. And then this nurse came and he talked to me. And he said… You know, he was very much into counselling. Because he, he really talked to me. 

And he said to me, 'Look, you are very lucky you're here. You're getting your retrovirals. Don't depress yourself, just get on with your life.' You know. 

And he talked to me. He said, 'Look, you're a parent, you're looking after your daughter. You don't have to get yourself into a depressed state like this. It's not going to be good for your, it's not going to be good for your daughter. Just look positively to life. Take your retrovirals. You're going to be alright.' And from that day I have never looked back. 

I found that nurse… I've never looked back. So in a way, I've had a bit of counselling. And he said to me, you know, 'You're going to be alright. They're trying to investigate where this pyrexia is coming from. If they find a cause they'll treat you.' They never found a cause. It settled down on its own.

What can you do?

People find their own way of dealing with their emotional problems: there is no one right way. While there are many professionals and people who can help along the way, you have to do a lot of the work yourself. The good news though is that for conditions like depression, people do tend to recover, even if things seem very bad at the time.

 

He was depressed and had little support when he was diagnosed with HIV and yet he now feels...

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Age at interview: 31
Sex: Male
Age at diagnosis: 29
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What doesn't kill you makes you more strong! And I am 100% more strong now than before… I think that I have been born again, you know and I feel more happy now than before. Amazing you know… the first thing is I had the… I discovered I was... HIV here. 

I didn't have no one, no member of my family to give me support. I didn't have job, I don't have place to stay. I was, I was very very close to being a illegal immigrant, so and there I was, HIV positive. 

I have, I have got over all these things, do you know what I mean? And now I'm here…

And I think that after I discovered I was HIV positive, I start to take care more about my health than before, you know what I mean? I started going to the gym, I hated the gym, the gym before, but now I am starting to go to the gym… before I used to eat everything and now I start to look for my… anyway after my health.

Apart from getting good treatment for HIV and so feeling better physically, people mentioned several other things that helped them:

  • Talking about your problems with friends, family or professionals
  • Getting out of the house, socialising and being more active
  • Joining a support group
  • Exercise (research shows that exercise can combat depression)
  • Avoiding the use of alcohol and drugs to deal with problems
  • Prayer
  • Doing voluntary work
  • Focusing the mind on more positive things
  • Complementary approaches to health e.g. acupuncture, yoga, meditation
  • Personal development courses and self-help books
  • Working through grief
 

How he deals with his anxiety about his health.

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Age at interview: 41
Sex: Male
Age at diagnosis: 38
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And then I still do worry about whether I can get any illnesses. I mean I wa- wake up every morning thinking is there anything wrong with me. You know. 

I mean it's like this morning, when I was on my way to come and see you. I don't know whether it's, whether it's because of the changing in the atmosphere, high pressure or low pressure, I think that's probably has something to do with it. But I felt a little bit sort of like breathless. But I think that's because I suffer from anxiety, you know. But no, I, I thought to myself well let, let's play it at its own game. You know, I mean why should this things stop me from going out or, or doing anything I want to do?

 

A simple ceremony helped him to grieve for his partner who had died.

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Age at interview: 63
Sex: Male
Age at diagnosis: 48
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And he (his partner) died not very long afterwards. And depression is funny but' It was a year later when, it was my fiftieth birthday. And oh it was absolutely wonderful and it started, the 50th year was probably the best in my life up to then. 51st year. And I realised that I had been depressed for a year.

In retrospect I realised that, it had been a very low year. And I was going to Venice with a few friends for my 50th birthday. And we took his ashes, and took a gondola out into the lagoon and left them. And I'd arranged, I had made a little speech and I thought it would all be a bit sombre. So I'd arranged with one of my friends in the gondola and said... when I said certain words, I said I want you to let off the cork from the champagne bottle. And it broke the ice and it was lovely, because it was a year later. And but it was a perfect little ceremony, he'd shown, taken me to Venice the first time I went, and we both loved it. And so his, his ashes are there in the lagoon.

Last reviewed May 2017.

Last updated January 2013.

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