Friends and family

Nobody can face HIV alone, and friends and family are often the first place people with HIV turn for emotional and practical support. Knowing that your HIV diagnosis doesn’t affect the willingness of those close to you to love and accept you can provide the confidence to overcome prejudice from wider society.

But not everybody is lucky enough to have the unconditional support of friends and family. People from all the communities affected by HIV have reported experiencing a temporary or even permanent deterioration in their relationships with friends and family after their HIV diagnosis.

There is prejudice and ignorance about HIV not only in mainstream British society, but also in the communities most affected by HIV – gay men and Africans. This can take the form of blame, fear of being associated with disease, accusations of moral failure or accusations of a lack of the will to maintain safer sex.

In some instances, housemates and family members have refused to use the same crockery and cutlery as people they know to be HIV-positive, and there have been instances of sheets being burnt after HIV-positive people slept in them.

This kind of behaviour is founded upon ignorance and fear. Indeed, many of the people who stigmatise HIV-positive family and friends may actually have good cause to worry that they too have HIV.

The community

Gay men and African people are the two groups most affected by HIV in the UK. Many HIV-positive people find that they are welcomed and accepted by their communities and find new friends and support mechanisms, for example via support groups and self-help agencies, within these communities once their HIV has been diagnosed.

But this isn’t always the case. Even though HIV has been an issue for gay men in the UK for over 20 years, many gay men still have little more than a basic understanding of HIV and don’t know anybody who is HIV-positive. Even though surveys show that approximately half of gay men admit to having unprotected sex in any year, many gay men nevertheless stigmatise the behaviour of other gay men and seek to blame gay men who are infected with HIV.

Similarly, many Africans are ashamed or fearful of HIV’s association within their community. Being rejected by your community can be particularly hard to cope with when you’re already having to cope with an HIV diagnosis, the unsettling experience of living in a different country and adapting to a new culture, or have problems with immigration, asylum, employment or money.

Faith groups can be an important focus of community and source of support for many people with HIV, particularly those from Africa. But the response of many faith groups to HIV has been highly stigmatising. This can make the HIV-positive members of their congregations feel excluded, isolated and ashamed. It can also reinforce people’s reluctance to be tested. On the other hand, some faith groups have responded excellently to HIV and have become, for many, an important source of comfort and practical support. Some useful contacts are:

• London Ecumenical AIDS Trust (a Christian organisation) : 020 7793 0338
• JAT (formerly the Jewish AIDS Trust): 020 8952 5253
• Woman Being Concern International (a Muslim organisation) :020 7740 1306 (020) 8952 5253

Many HIV agencies host groups for HIV-positive people to meet, talk and provide mutual support. A lot of people find these very helpful as either something to dip into when they’re feeling under pressure or as a source of longer-term support. But they don’t suit everybody, so don’t think there’s something wrong with you if you tried one and it didn’t help.

You can also use the internet to access support and information from other HIV-positive people. There are some specialist sites where people with HIV discuss issues related to their health or treatment, and some people with HIV have their own sites and blogs. Some gay, websites also have chat rooms dedicated to HIV. The usual cautions about exchanging information and arranging to meet people from the internet apply if you use the web in this way. And if somebody offers you advice about your treatment check it with a reputable source, for example NAM’s website, http://www.aidsmap.com/.

Prejudice can also be experienced in the general community. There have been cases of people with HIV being harassed by their neighbours, for example. If you are tenant, report this harassment to your landlord. Harassment will be a breach of a tenancy agreement and people guilty of harassment can be evicted. Harassment should also be reported to the police. It is worth knowing that is you are attacked because you have HIV this would be considered a hate crime and the courts can pass tougher sentences on people found guilty of hate crimes.

Healthcare

Everybody with HIV needs to go to a specialist HIV clinic at regular intervals, so doctors can monitor how HIV is affecting their health. If they are taking anti-HIV treatment, doctors can make sure that it is working properly. Many HIV-positive people also see different specialists for other medical problems. Just like everybody else, people with HIV should register with a GP and have regular dental check-ups.

Some of the best HIV care in the world is available free of charge in the UK from healthcare workers who are dedicated to making sure that people receive the treatment and care they need, regardless of their background. What’s more, healthcare professionals work to codes of ethics designed to make sure that their personal prejudices don’t interfere with their provision of services. In addition, the law makes it illegal to discriminate against people with HIV from the very moment of their diagnosis.

In their day-to-day practice, doctors, nurses and dentists should already be using what are called “universal infection control procedures” which are designed to prevent the transmission of blood-borne diseases in medical settings, so they shouldn’t take any extra precautions just because they know somebody has HIV.

But occasionally, healthcare workers don’t meet these standards. Sometimes it’s because they are racist or homophobic, and sometimes it’s just ignorance. Whatever the reason, it’s unacceptable and should always be challenged.

It might just be that the person needs to be asked what they intended by their words or actions, as it’s possible to misinterpret what somebody meant. If their answer isn’t satisfactory, it might be necessary to make a formal complaint. It can be daunting complaining about people who are providing services that you need to carry on using. But an HIV clinic, other hospital departments, GPs and dentists should all have complaint procedures. The standard of care a patient receives should not be affected because they are making a complaint. If the complaint isn’t handled to your satisfaction, then you could take it to a higher level, such as the appropriate professional or regulatory body. The General Medical Council is where you make formal complaints about serious professional misconduct by doctors. Their telephone number is 0845 357 0020. If you have a very serious complaint about your dentist, this should be made to the General Dental Council. Their telephone number is 020 7887 3800.

Complaining can be very trying and you need to be prepared for complaints procedures to drag on for months. Try and make sure that you have the support of loved ones or friends. HIV organisations can also help by acting as advocates on your behalf. The UK Coalition of People Living with HIV and AIDS (often just called the UKC, or the UK Coalition) have a lot of experience in this area. Their telephone number is 020 7564 2181. THT Direct (0845 1221 200) should also be able to help you find support.

Work

Many, probably most, people with HIV will never experience any problems at work because they have HIV. But discrimination does occur and can take the form of malicious gossip, isolation or losing your job after disclosing your HIV status.

The Disability Discrimination Act (DDA) provides very important protection for HIV-positive people from the moment of their HIV diagnosis in the field of employment. The protection provided by the covers recruitment, terms and conditions of employment, less favourable treatment at work, and opportunities for job development and promotion.

HIV organisations have helped HIV-positive people secure fair treatment at work and a very good leaflet setting out the rights of people with HIV in the workplace has been produced by the National AIDS Trust (NAT) called Positively Employed. You can obtain a free copy by telephoning NAT on 020 7814 6767, or you can download it from their website, http://www.nat.org.uk/.

Goods and services

The DDA also makes it illegal to discriminate against people with HIV in the provision of goods and services. What this means is that a landlord cannot refuse to let property to you because you have HIV; a shop, restaurant or bar can’t refuse your custom or treat you less favourably because of your HIV; and a hotel can’t refuse you a room.

It’s worth pointing out at this point that many people with HIV don’t actually like being legally defined as disabled and actually find this quite stigmatising. Whether or not you agree with or approve of this definition, you can still enjoy and claim the protections that the DDA provides.

The media

Although HIV does sometimes receive very good coverage in the media, most reporting of HIV, from the very beginning of the epidemic, has been inaccurate.

This has been evident in recent reporting of criminal cases involving the reckless transmission of HIV.

Many HIV-positive people have been upset and angered to see that HIV is once again being reported as a “death sentence”, that people with HIV are once again being described as “evil”, “monsters”, and “victims” and that the complexities of the lives of HIV-positive people are being reduced to sensationalist reports.

One way of coping with the media is to simply ignore it. For example, If an article or television programme is likely to distress or annoy you, then don’t read it or watch it.

If you do see something that contains factual inaccuracies, or is stigmatising, then you might consider writing a letter pointing out the faults. News-based websites also have a facility for readers to contact them about factual errors or prejudicial reporting. Any reputable TV and radio station will have a department that responds to their viewers' and listeners' complaints and comments.

If you’re not confident making a complaint yourself, bring the media item that you wish to comment on to the attention of an HIV organisation who might be able to complain on your behalf.  Both THT (020 7812 1600) and NAT (020 7814 6767) have specialist media teams used to dealing with the press and NAT have made successful complaints to the Press Complaints Commission (0845 600 2757) about coverage of HIV in the media.

NAT has also established a team of people living with HIV called “Press Gang” who are interested in engaging with and challenging the media regarding its coverage of HIV. For more details, contact NAT on the number listed above.

Should you become the focus of media attention, think very carefully before speaking to a journalist and consider asking an HIV agency for support.

That’s not to say that the media always misreports or exploits HIV. Some newspapers and sections of the broadcast media have a good record on HIV-related issues.

You may even want to make your own contribution to the media about your experiences of HIV. A safe place to start would be to write a personal testimony for the NAM book, Living with HIV. These testimonies are also published online on NAM’s website, http://www.aidsmap.com/. NAM’s contact details are at the end of this booklet.

Positive Nation is a specialist HIV magazine that aims to provide accurate reporting of the issues encountered by HIV-positive people and represent the diversity of experiences of the communities affected by HIV. Positive Nation is free and can be obtained from HIV clinics and organisations and can be viewed online at www.positivenation.co.uk.

Sexual relationships

The vast majority of HIV-positive people in this country acquired their infection through unprotected sex and most remain sexually active following their diagnosis and do not pass on their infection to others. But your experiences of sex, and your attitudes towards it, are likely to change following an HIV diagnosis.

Many people experience a change in their attitudes towards themselves as a sexual being, at least temporarily, after finding out that they have HIV. Some people report that they feel diseased, or undesirable, or they blame their sexual desires and behaviour for contracting HIV. Many people experience sexual dysfunction or go off sex. Don’t be surprised or ashamed if you experience changes in your attitudes towards, or experiences of, sex after your HIV diagnosis. Try talking to your partner or a close friend about what you are feeling or experiencing. Alternatively, professional counselling can provide an opportunity for you to talk through what you are experiencing and may be available through your HIV clinic.

You need to decide if it is appropriate for your sexual partners to know that you have HIV. There are some good reasons why you might want your partner(s) to know and it needs to be emphasised now that one of the reasons why the recent prosecutions for the reckless transmission of HIV have been successful is because the accused had unprotected sex with their partners without first telling them that they had HIV. There’s more on the criminalisation of HIV transmission later in this booklet.

If you have a current partner and spent some time discussing having an HIV test with them, then you may have a good idea of what their reaction might be to your HIV-positive diagnosis. If you didn’t discuss it, then think about the practicalities of telling your partner and what their reaction might be. It could be that your HIV status will have implications for your partner – if you had unprotected sex with them, then they could have HIV too, and should be tested. Your partner might be a wonderful source of support and love. But on the other hand, telling your partner you have HIV could put strain on your relationship.

Whether or nor you tell new sexual partners will depend on a number of factors, such as the type of relationship you are hoping to have (is it just a one-off, or are you hoping to build a longer-term relationship?), and the kind of sex you have (are you going to have sex with involves a lower risk of HIV transmission, such as oral sex? Are you going to use condoms? Or are you going to have unprotected anal or vaginal sex?).

Think about how you would react if you were rejected, insulted or even attacked if you were to tell a potential sexual partner you have HIV. Many people meet potential sexual partners online and report that this provides a safe way of disclosing HIV status to potential partners. But it can still hurt if somebody loses interest or is even insulting when they find out you have HIV.