What people think and feel about HIV is influenced by a broad range of factors, including fear of transmission, preconceptions about lifestyle, and judgements about how HIV is acquired. Intersecting prejudices toward groups who are disproportionately affected by HIV (eg racism and homophobia) also have a negative impact. Unfavourable attitudes towards people living with HIV are referred to as stigma. HIV stigma can take different shapes and forms depending on the community and cultural setting. Preconceptions can also act as a barrier to testing and diagnosis if people are afraid of being stigmatised or if people are not offered testingbecause they do not fit the stereotype.
This report looks at the impact of preconceptions – who we talk to about HIV, the types of responses we receive, and how this affects our well-being.
When it comes to telling people about HIV, no two experiences are the same. HIV is still a highly stigmatised condition and for many people living with HIV, talking to others about their status is a significant step. This can be because of concerns about how other people perceive HIV, fear of rejection, or not wanting to worry others.
The word ‘disclosure’ is commonly used to describe the process of telling others about one’s HIV status. Using this word can amplify the difficulty, as it implies that what is shared is something negative, a secret that needs to be guarded. Throughout this report we use ‘ talking’ or ‘sharing’ as this is more empowering and less stigmatising.
In the Positive Voices survey, 1 in 8 (13%) people said that they had not told anyone about their HIV status other than healthcare professionals. While some simply may not feel the need to talk to others about HIV, for others this could contribute to significant loneliness and isolation, especially if it is a barrier to forming relationships with others.
Our stories highlight the importance to our well-being of being able to talk to friends or family about HIV. Some people were very selective about who they talked to about HIV, while others were able to be open about their status. What is important is that the decision to tell other people is taken by the personliving with HIV. When this agency is removed by a breach of confidentiality, it can cause significant distress. There are times when we do not feel confidentor safe talking about our status, especially if we suspect that the response will not be a supportive one.
The importance of strong HIV support services is clear. Support services, including peer support, can help people to prepare for and feel comfortable about telling others about their HIV status. This can take the form of sharing or listening to other people’s experiences, or supporting people to deal with internalised stigma before telling others and then managing any negative reactions.
Overall, around 1 in 4 people with HIV said that they needed support disclosing their status in the past year – this need was unmet for 40% of people.
Women living with HIV were more likely to tell family than friends about their HIV status. A significant proportion of women living with HIV are from black African and Caribbean ethnic communities and/or migrant communities where HIV stigma is common. This illustrates why support services that offer opportunities to discuss HIV safely can be so valuable to women. 95% of women said HIV support services said they were moderately or very important to them (90% of men said the same).
Nearly a third of women (31%) said they needed support with sharing their HIV status with others in the past year. This need was unmet for 29% of them.
More than half (55%) of people with HIV said that in the last year they had used a sexual health clinic, 52% used a dentist, 20% used Accident and Emergency (A&E) services, and 11% used inpatient services.
Across the range of different healthcare services used by people with HIV, stigma was reported across in all of them. One in 3 (35%) had been worried that they would be treated differently to other patients, 14% had actually experienced discrimination in a healthcare setting, 18% had avoided healthcare when they needed it, and 11% of people living with HIV had actually been denied or refused a treatment or procedure that they needed.