living with HIV – teens speak out
by John Illman
Adele Minchin's novel, The Beat Goes On, is a story about teenagers in Bury, a small town outside Manchester. It's about parties, gigs, skateboarding, school bullies and dealing with parents. But, above all, it's about living with HIV/AIDS.
© stockbyte
The two main characters are Emma and her cousin, Leyla. Emma, 16, turns to Leyla for help when she discovers she is HIV-positive. The story is honest and gripping – more so when you realise it's based on Minchin's own experience at a London-based HIV/AIDS support group, Body and Soul, which has separate groups for adults, children and teenagers.
'The book is fictional,' says Minchin, 'but it's a mish-mash of the stories that people at Body and Soul shared with me. One of the things that inspired me was that the people show such courage in the face of what they're going through.'
a deadly silence
HIV/AIDS is still seen as a shameful consequence of sex or drug use or a problem limited to gay men. But it has disrupted the lives of more than 10,000 young people in the UK. Some are born with the virus (HIV can be transmitted in the womb); some contract it in childhood; and some have affected parents or brothers and sisters.
Most such young people are afraid to talk about their experiences. Minchin knows of 'horrific' stories about what can happen when the secret gets out and highlights this alarming aspect of HIV/AIDS in her memorable book.
case history one
Joanne was 14 at the time of this interview and was living with her aunt. Her mother had already died from AIDS.
'I started coming to Body and Soul seven years ago, when my mum died. I was only told I was HIV-positive last year. I was told by my aunt and a youth worker here. I thought I was going to die, that I wasn't going to have a normal life, but I got support from people here and now I don't really worry about it.
'I've been ill a couple of times, my medicine makes me sick, but my aunt is HIV-positive too, and we're there for each other. She looks after me, takes time off work and stays at home when I'm ill.
'I can't tell anyone at school about it, because when they're cussing someone they say they've got HIV or AIDS. I just ignore it, but sometimes I stick up for the people being teased. The other kids just think that if you've got it, you'll pass it on to the next person you see. It's hard being secretive as well as being ill, but you have to carry on. I wish people knew that you have to go through a lot of things, that having HIV is painful every day.'
case history two
Chanel was 17 when interviewed. She was living with her mother, who was HIV-positive, and studying for her A-levels.
'My mum's been HIV-positive for six years. When she told me, she explained how she got it, but that didn't interest me because she's still my mum. HIV really hurts me, even though I don't have the disease. It's like I've got it, because when mum's upset I know why.
'I feel like the mum in the house, I clean, look after my sister; my mum tries to do things, but I won't let her – the more she does, the more tired she gets. I get tired too, but you have to carry on. She's my mum and I have to be there for her, no matter what. I'm the only one she can open up to.
'Don't judge someone with HIV. Because you never know, someone in your family or your friends, or even you, might have it. Before you judge anybody, go to your doctor and check yourself out. Even if you are all right, you've got to understand, no one deserves this – drugs, sex, whatever – because it's a punishment for life, and no one deserves to be punished for life.'
how to get an HIV test
HIV tests are available from both hospitals and GPs. Hospital tests are usually carried out in GUM (genito-urinary medicine) or sexual health clinics. Pregnant women can have an HIV test as part of routine antenatal care – a test is never done without a woman's explicit consent. Testing should be accompanied by counselling to discuss all the implications of a test – from life insurance to confidentiality and how to cope with a bad result.
The HIV test involves a simple blood test. Results may be available within 24 hours, but you may have to wait for about a week. A positive test result is always double-checked just in case there's been a laboratory mix-up. You should be able to get a written test result if you need one – for say an overseas visa or work permit.
help and info
Channel 4 is not responsible for the content of third party sites.
 |
The Beat Goes On by Adele Minchin (Livewire, 2001) |
 |
|
You might also be interested to read our feature about the history of HIV/AIDS in the UK.
For more information on how you can get tested for HIV go to
www.avert.org.uk/testing.htm – there's info about what to expect, where to go and the pros and cons of being tested.
organisations
Body & Soul
9 Tavistock Place
London WC1H 9SN
Tel: 020 7383 7678
E-mail: info@bodyandsoulcharity.co.uk
Website: www.bodyandsoulcharity.org
A UK charity supporting children, teenagers, women, heterosexual men and their families, who are living with or are closely affected by HIV and AIDS. Also runs Teen Spirit, a group for teenagers who know about their HIV status or that of a family member.
Children with AIDS
Lion House
3 Plough Yard
London EC2A 3LP
Tel: 020 7247 9115
E-mail: info@cwac.org
Website: www.cwac.org
A national UK charity which offers support and services for families with children affected or infected with HIV/AIDS.
Terrence Higgins Trust
52-54 Grays Inn Road
London WC1X 8JU
Helpline: 0845 1221 200 (Mon-Fri 10am-10pm, Sat-Sun 12-6pm)
E-mail: info@tht.org.uk
Website: www.tht.org.uk
Offers a wide range of free and confidential services for people with HIV, including specialist advice and representation on welfare rights, housing and legal matters, practical help and befriending.
Sexual Health Line
Tel: 0800 567 123 (24hrs, every day)
Textphone: 0800 521 361
Gives confidential advice and information about STIs or any other aspect of sexual health. Can also tell you where to find local sexual health services. Lines are open 24 hours a day.
AVERT
4 Bristol Road
Horsham RH13 5BA
Tel: 01403 210201
E-mail: confidential@avert.org
Website: www.avert.org
Website contains information for young people, personal stories, a history section, information on becoming infected, a young and gay section, and free resources.
UK Coalition of People Living With HIV & Aids (UKC)
250 Kennington Lane
London SE11 5RD
Tel: 020 7564 2180
E-mail: reception@ukcoalition.org
Website: www.ukcoalition.org
A national organisation supporting HIV positive and negative people, who want to make their own informed choices. Comprehensive website offers information and support of all kinds, including discussion boards and jobs links.
websites
aidsmap
www.aidsmap.com
Information, news and resources for people with HIV and AIDS and professionals. Features extensive information on treatments plus a searchable database of HIV clinics in the UK.
AEGiS
www.aegis.com
Definitive web-based reference for HIV/AIDS-related information, featuring up-to-date information regarding the history, prevention and treatment of HIV/AIDS.
Playing Safely
www.playingsafely.co.uk
NHS guide to sexually transmitted infections, including information on HIV/AIDS, such as what it is, getting tested, and having safer sex.
Society of Sexual Health Advisers
www.ssha.info
Features an online database of GUM clinics in Britain and Ireland.
(updated May 2003, resources updated June 2005)
