Positively UK: Living with HIV
What are the biggest misconceptions about living with HIV that you’d like to challenge?
This World AIDS Day theme is “Ending the HIV Epidemic: Equitable Access, Everyone’s Voice”. The day was first observed in 1988 and since then, it has increased awareness and knowledge around HIV and AIDS, helping to end HIV-related stigma.
We’ve come a long way since the first recorded HIV/AIDS case but many people are still unaware that you won’t get HIV from those of us who know we have the virus and are on effective treatment.
Having no detectable virus in our blood, as a consequence of taking HIV treatment, means that the virus can’t be passed on (Undetectable = Untransmittable or U=U), a medical fact backed globally by every important clinical and scientific body. Nearly all those who know they have HIV in the UK today (98%) are taking HIV medication, because we want to take care of our health and protect our partners.
What is the biggest challenge impacting those living with HIV?
Stigma and moral judgement about our status is by far the biggest challenge we have to deal with. This is because HIV initially affected some of the most marginalized and ostracized groups in society, such as people from LGBTQ+ communities and people who inject drugs. Nowadays, in the UK, we have access to effective HIV treatment, and we can expect to have an undetectable viral load and a normal life span, without the worry that we could pass the virus on. Yet, the prejudices surrounding our diagnoses, alongside social inequalities such as racism, homophobia, sexism, poverty and more are still affecting our health, access to services, and ability to live good lives with HIV.
Many of us have concerns on how others perceive our HIV status. According to the latest Public Health England data, 1 in 8 people living with HIV have never told anyone about their status, outside of a healthcare setting. A HIV diagnosis can often spark feelings of guilt and fear of being unlovable, which creates loneliness and isolation, especially if it becomes a barrier to form relationships with others. This is why peer support services make a positive impact. Talking to someone else who is also HIV positive, listening and sharing experiences, can help people feel more comfortable talking about their own status with others, as well as learning how to live well with their diagnosis.
We’d love to hear more about GROWS, and why it’s so important to support women growing older with HIV?
Advances in antiretroviral therapy mean that the number of women with HIV aged over 50 has tripled in the past 10 years to over 10,000, according to latest Public Health England data. For women who have been living with HIV for a long time, and who may already be affected by long term HIV medication, the challenges could be profound. For example, many women with HIV experience more severe menopausal symptoms, increased risk of osteoporosis/osteopenia (weakening of the bones which increases risk of having a fracture), and cardiovascular disease (which if untreated can lead to angina and heart attacks), and high levels of anxiety and depression.
However, many of these challenges can be faced successfully if we have information about them, and have the appropriate support of our health care teams, our families and our communities. Our GROWS (Growing Older Wiser and Stronger) partnership in collaboration with Sophia Forum, NAM Aidsmap, and University College London harnesses the collective knowledge and lived experiences of older women living with HIV, and provides peer-led support, alongside accurate and accessible information, and access to networks and spaces to improve quality of life for older women.
What makes Positively UK uniquely placed to support those living with HIV?
Peer support has the power to move people from the trauma of an HIV diagnosis to self-acceptance and self-love, which is key to counteract the effect of stigma. We are the lead peer support provider within the HIV sector. Our work enables people with HIV to share lived experiences and practical strategies to live well with HIV. We provide one-to-one peer support and group workshops on HIV and other matters to all communities living with HIV, including young people, older individuals, gay men, heterosexuals, women, people of colour and migrant communities. In addition, our peer workers provide outreach at 16 HIV clinics across London. All our staff and volunteers are people living with HIV who bring their unique expertise, which no one else can have, of the health and social implications of living with a long-term condition that still carries stigma in society.
How can our audience be HIV allies and support Positively UK?
There are many ways to get involved. From following us on social media and sharing our messages to organising a fundraising event or providing expert pro bono advice. Get in touch if you’d like to know more.
Read about Positively UK's work here.
Read more about the realities of people living with HIV nowadays here.