Being diagnosed with HIV

Most of the women we spoke with had been diagnosed some years before their most recent pregnancy. Some had been diagnosed a long time ago, before effective medication was available, and were able to compare those times with the present.

Here we describe what women said about the following issues:

  • How women found out their HIV diagnosis
  • Reacting to an HIV diagnosis
  • Getting treatment and care
  • Choosing whether to tell others

In talking about their experiences, women also shared what had led them to learn about their diagnosis. This included receiving a diagnosis following an illness, during pregnancy or during some routine health screening. A few women also discussed their experience of growing up with HIV.

Most of the women we spoke with had been diagnosed some years before their most recent pregnancy. Some had been diagnosed a long time ago, before effective medication was available, and were able to compare those times with the present.

How women found out their HIV diagnosis

A person may learn about their HIV diagnosis in several ways, and we found a large range of experiences. Sandra and Maria were diagnosed after a regular health screen check [link to resources] and remember what a shock it was. Maria still wonders how she came to have HIV in the first place.

Sandra was diagnosed after a routine health screening before she was a mother (played by an actor).

Marella and Sasha were born with HIV and diagnosed in childhood, and therefore had several years of experience of living with HIV. However, Sasha still had unhappy memories of the time before effective treatment was available.

Sasha was diagnosed as a child, before there was effective treatment.

Amina was diagnosed with HIV at the same time as finding out she was pregnant. When she and her husband decided to try for a baby, her partner had an HIV test. This turned out positive and led to Amina’s own HIV positive diagnosis. She found it overwhelming because she had also just found out that she was pregnant.

Amina was diagnosed after her husband told her of his diagnosis.

Amina felt better able to cope with her HIV diagnosis because she had found out that she was pregnant, and it gave her “something to live for”.

Amina was diagnosed with HIV and found out she was pregnant the same day.

We also spoke with a small number of women – such as Amy who had been diagnosed late – after years of suffering with HIV-related symptoms and without being offered an HIV test.

Amy had advanced HIV symptoms years before she was offered an HIV test.

Reacting to an HIV diagnosis

HIV is transmitted through body fluids such as semen, vaginal fluid, breastmilk and blood. Anyone can get HIV, but some people feel there is a particular stigma about acquiring HIV sexually. If a person is taking effective HIV treatment and has an undetectable viral load, they cannot pass HIV on through sex (this is known as Undetectable = Untransmittable, or simply “U=U”), however this does not (yet) apply to breastfeeding.

Although HIV is a treatable condition, with medication available to everyone in the UK, being diagnosed with HIV comes as a shock to most people. There are several misunderstandings about HIV in society, and a lot of stigma associated with the condition. Gracelove at first denied her diagnosis and thought her symptoms were due to being pregnant. On the other hand, Stephanie knew about the latest medical information before being diagnosed herself, which helped her to deal with her diagnosis.

Gracelove was in denial when she first received her diagnosis, as she thought her symptoms were due to being pregnant.

Many people are not aware about the huge progress in HIV therapy. People just diagnosed with HIV may worry about the future, and what an HIV diagnosis means for their health, their family and life in general. Some of those we interviewed did not want to think about it too much, like Swelihe and Deborah. Others, like Holly, may feel bad about themselves or worry about how society will view them.

Swelihle initially found her diagnosis difficult to come to terms with.

We also spoke to the partners of two women living with HIV and asked them to recall when they first learned about their partners HIV status. Both men do not have HIV themselves and had met their partners’ years after diagnosis.

Edward did not know much about HIV before meeting his wife, Marella (played by an actor).

Getting treatment and care

HIV treatment is free to everyone living in the UK, regardless of their migration status. However, Rachel did not know this when she was diagnosed, and this delayed her seeking medical help. She was also worried that her HIV status would become public knowledge.

Rachel worried that her HIV diagnosis would affect her immigration status in the UK.

After an HIV diagnosis, people living with HIV are connected to specialist HIV care for clinical support to manage their condition. Advice about when to start medication used to depend on a person’s health, and typically only pregnant women with HIV were advised to take medication straight away. However, this has changed, and people are advised to start treatment as soon as possible. Some of the women we spoke to only started medication years after their diagnosis, and some were diagnosed before HIV medication was available.

Sandra began HIV treatment years after her diagnosis when she was considering getting pregnant.

Taking HIV treatment helps people with HIV to stay well. It also significantly reduces the likelihood of HIV transmission during pregnancy and childbirth, especially when HIV medication is taken during the early stages of pregnancy. The women we spoke to shared that being pregnant with HIV was a particular worry especially about the impact on their babies’ wellbeing. It took Emma some time to believe that, while she’s on HIV treatment, she could have a baby born without HIV.

Emma was not sure if she would be able to have more children following her diagnosis, it took her a while to accept that she could.

There are particular types of HIV medication that are more suitable to take during pregnancy. Sometimes pregnant women and birthing parents may be asked to change over from the HIV treatment medications they were on to something more suitable for pregnancy. The women we spoke with felt motivated to take their new medication so they would stay well and not pass HIV on to their babies.

Veronica was motivated to take her medication and stay well for her family.

However, experiences of taking HIV medication varied. Lana discussed having an allergic reaction to her medication. She was diagnosed during an earlier pregnancy, and felt her medical team disregarded her needs and anxieties. She felt all the emphasis was on keeping her baby safe, but not enough care for her.

Lana had an allergic reaction to her HIV medication when she first started taking it.

Choosing whether to tell others

People living with HIV in the UK are not legally required to share their diagnosis with their partner, family or friends. HIV is still a stigmatised health condition, and people living with HIV may wonder how others might react and if they should tell anyone about their HIV status. The women we spoke to had different experiences of telling others. Marella, Sasha and LeaSuwanna were living openly with HIV, so all their friends and family knew their HIV status. They felt that sharing their diagnosis with others had been a source of support. Holly, Emily, Eriife and many others we spoke with had shared their HIV status with at least one of their close family, a friend, or their partner.

For Emily and Sherry, sharing their diagnosis had led to their relationships ending, however this was not the case for Eriife, who ended up marrying her partner.

LeaSuwanna initially told her close family about her HIV diagnosis and now lives openly with HIV.

Women living with HIV can be particularly vulnerable to mental health problems, 4M Network has a webinar on violence against women and mental health issues that you may wish to watch.

Feeding a baby while living with HIV

In this section, you can find out about the experiences of mothers and pregnant women who are deciding how to feed their babies while living...

Current or most recent pregnancy

Being pregnant while living with HIV comes with a range of different considerations. In this section, we focus on the experiences women had during their...