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The community

A community can be based on many things.  You may think of your friends and family as your community.  But it is likely there are other people in your life who you know less well.  You may feel that you belong to a community based on the area you live in, your sexuality, your church, your nationality or people who share your interests.  People with HIV are often welcomed, accepted, loved and supported by the community they belong to and find new friends and methods of support.

But this isn’t always the case. For example, even though HIV has been an issue for gay men in this country for more than a quarter of a century, many gay men still don’t really understand HIV and don’t consciously know anyone who has HIV.

I got ill and was admitted to hospital when I first contracted HIV and was diagnosed soon after. An ex-boyfriend found out I’d been in hospital, but didn’t know I’d been diagnosed with HIV. I was going to tell him to go for an HIV test. But before I could do this I bumped into him in the street. He asked me how I was and said I should go for an AIDS test because of the ‘slut’ I’d been. He added that I needed to tell him the result so I could put his mind at rest. I was gobsmacked. He didn’t have any concern for me, all he cared about was himself, and the fact was he was the only man I’d ever had unprotected sex with.

For someone who has not lived in the UK long before being diagnosed, being rejected by a community can be really hard to cope with, on top of the unsettling experiences of living in a different country with a new culture, or if you are having problems with immigration, asylum, employment or money.

Faith groups can be an important focus of a community and a source of support for people with HIV. Some (but sadly, not all) faith groups have responded excellently to HIV and provide an important source of comfort, friendship and practical support.

Occasionally prejudice and discrimination come from people who simply live nearby. For example, some people with HIV have been harassed by their neighbours. If you are a tenant, particularly a council or housing association tenant, this is something that you could report this to your landlord. Harassment will be a breach of a tenancy agreement and people guilty of harassment can be evicted. Also, you might want to consider reporting harassment to the police. An HIV organisation will be able to help you make a complaint or take other action.

Our windows were smashed and our car vandalised when our neighbours found out we had HIV. We reported it to the police. They were understanding and helpful and took action. But it was still a horrible experience and we ended up moving. I’m still really angry about it, it should never have happened in the first place. But I’m better than the ignorant idiots who made my life a misery.

Even if you don’t feel like complaining formally, then try and talk to somebody you trust about your experiences. At the very least tell yourself that what you’ve experienced is wrong. It will help you to cope.

Many HIV agencies host groups for people with HIV to meet, talk, and provide mutual support. Some people find these very helpful as either something to dip into when they’re feeling under pressure or dealing with a particular problem.  Others use them as a source of long-term support and feel they are part of a positive community. Some groups are open to all people with HIV, others are only open to people from certain communities.

Not everybody finds these groups useful, so don’t think that there’s something wrong with you if you try and one and it doesn’t suit you. There is nothing to stop you trying another group, or coming back at some stage in the future.

Support groups have very strict rules about confidentiality, so you shouldn’t have to worry about people finding out that you’re going to one.

You can also use the internet to access support and information from other HIV-positive people. There are some specialist sites which aim to create an online community, where people discuss issues they’ve encountered, and some other sites have blogs or websites dedicated to HIV. You may find these useful but be careful about exchanging personal information and arranging to meet people if you use the web in this way. If somebody offers you advice about HIV treatment make sure you check it with a reliable source, such as somebody who works at an HIV clinic or NAM’s website, www.aidsmap.com.

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