Who can I talk to?
2 November 2023. Related: HIV positive people, Resources.
Confidentiality
After you find out you are HIV positive, only you, your doctor and other health workers involved in your care, will know about your results.
- Health workers cannot tell anyone about your results without your permission, They cannot tell your partner, family or general practice doctor (GP).
- It is up to you who you tell, and when you tell them.
- Sometimes it helps to talk to a friend or counsellor about who you might want to tell.
Getting support
Think about who you can trust with information about your health.
Think about whether this is news they will be able to deal with. Once you tell someone, you can not take that information back.
- If you think that the person you want to tell will not be able to cope, then you might have to help them with the news.
- If you do not want to talk to a friend or family members, then at least speak to one of the health advisers or counsellors at your clinic. They should be able to help you with your first questions. They can also help you access other support services.
- Outside the clinic, many HIV community organisations run phonelines and support groups. The i-Base phoneline, for example, is run by other HIV positive people, and you can call us.
Friends and family
Because HIV is now largely treatable, there is rarely any urgency to tell other people until you feel ready to do this.
You can take time to learn about HIV and treatment before you tell family and friends who may still be shocked and worried.
- Telling someone your HIV status may change how they think about you or how they treat you. Many people may have a more positive response now because there is treatment. Many others will have a gut reaction based on fear and worry. Stigma is still a problem in many communities.
- On the other hand, keeping things secret in the long-term is likely to cause you stress. It will make a big difference and will help you to have at least one or two close friends who you can talk to.
Peer support
Knowing other people who are also HIV positive can made life a lot easier.
Being HIV positive without knowing anyone else in the same circumstances is difficult.
It really helps to be able to talk to someone who has also been living with HIV.
In the UK, there are many organisation that can help, a few of the larger projects are listed below.
Positively UK are a peer-led HIV organisation that run several support groups and training workshops, including for people who are newly diagnosed. This includes linked programmes for women, gay and bisexual men, straight men, young people and older people.
Based in East London, Positively East run a wide range of services for people living with HIV in East London. This includes comprehensive information advice and counselling services. They also run support groups that are both mixed and for specific people (African, gay men, etc).
The Terrence Higgins Trust (THT) are a large sexual health charity that focus on HIV and provide counselling and other services. THT run an online forum for HIV positive people called myHIV.org . This requires a more complicated registration process but you can still do this using a made up name if you want to do this anonymously. You need a working email address to register.
Waverley Care provide a wide range of direct services for people living with HIV in Scotland. The group also take a lead role in sexual health services and public campaigns. They run a positive persons forum and services are run by both staff and volunteers.
Online forums are a good way to communicate with other people, especially if you are more geographically isolated. The best and most established international forum (that includes the UK) is run by poz.com. Although it is based in the US the poz forums include a lot of contributions from people in the UK.
See the link below for details of support groups and courses and workshops across the UK. These include different aspects of living with HIV including being newly diagnosed.