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).

When I came to the UK with my mates, I went to the GP just to register for, you know, general health checks and one of the checks they suggested was the do a chlamydia test. Which I did, and it came back positive, and the nurse said everybody positive we were offer HIV test, just as a follow up. Because that was the procedure back in 2010. So, I showed up not thinking absolutely anything. It was not a rapid test it was a test where you have to come back to get the results, so I came back a week or so later, and she said your test came back positive. So, I was very young, a few months into living in the UK I couldn’t believe that I had HIV, I had just started University, it was a big shock.

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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.

I was obviously born with HIV and diagnosed at five didn’t actually find out until I was 16 and then I got pregnant at 17 when treatment and life expectancy still wasn’t quite known as much as it is now.

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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.

He struggled to tell me at first. I think he struggle to tell me but, obviously, I needed to go and get tested as well. And so and so I knew there was a build-up of something happening, something coming up, something wasn’t right, that’s why he asked me to go. Then slowly, you know, we were able to speak about it. Yeah, it’s been difficult but, obviously, we still haven’t processed it. To be honest I still personally haven’t been able to process it and just putting all my energy toward the pregnancy and that because, you know, it was all in a matter of a few minutes.

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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.

I think the fact that it happened on the same day like, it was like I believe in God like I am a Muslim woman. I have a strong faith in God. So, the fact that He hit me with bad news and then somehow, okay here’s something for you to hold onto or something to live for, kind of thing or like, you know, be positive for. I feel like yeah, my pregnancy is a positive thing and not like oh I’m burdened with a pregnancy now. Look now I’m happy again. I mean I’m still pregnant.

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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.

I was, I thought I had Lupus like my sister that’s what my symptoms were and, and then back on, they wasn’t, I’d had the five years I’d had funny bloods and lots of really like symptoms and I was pushing and pushing and pushing for help they weren’t referring me to like rheumatology or haematology, nothing and then I pushed for the referral and then straight away they done a test and then I was called in and then I was told, so they were, once I was referred they were straight on it but the GP, I mean now in hindsight obviously the symptoms and the what was going on is very clear that, you know, there was cause to kind of look into it a lot earlier it’s, yeah I think I’ve got like a three page, I wrote down all of the blood tests, it was three pages of A4 of me going in saying I’m tired, I’m this, I’m this and then blood test after blood test after blood test and nothing was done at all. So yeah, it’s quite disheartening when I could have just been well this whole time like I am physically well now, I didn’t need to get to that point where I was, you know, in bed all day in pain all that kind of stuff. I got myself into debt obviously because I wasn’t focussed on paying bills and all of that kind of stuff, so it’s that, it’s the coming back out of that that is now frustrating because I’m in a worse place than if they’d just told me and I’d been able to manage my life a bit more.

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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.

I did not believe the diagnosis because I didn’t feel I had any symptoms that sort of showed that I wasn’t unwell and the symptoms that I felt that I was pregnant and then when I was diagnosed, I did mention it to my husband then of which he said the diagnosis cannot be possible because he has had similar tests done at his workplace and he is not positive. And I know for sure because it’s me, I know myself, I know after I married with him, I have never been with any other person, and during my first birth it was natural delivery, vaginal delivery.

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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.

I found out 2018, late, late I think when I was about six months and then I started the treatment then. At first, I was I wouldn’t say I was in denial, I was just I don’t know how I can say this but, you know, when you just wanna ignore everything and just carry on with life.

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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).

I would say it was something that probably never really crossed my mind until I met my partner and it was, the information was, was given to me quite well and structured by my partner, I think it, it was in one breath quite a shock and the wealth of information that was obviously provided to me because again it was just something I had absolutely no idea, almost to the point, you don’t think it exists, you know, it’s not something you hear about every day and yeah I, very, very quickly learned what was what and I think naturally being quite an inquisitive person I think I sort of took it upon myself to kind of learn as much as possible even outside of the information I was given.

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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.

The support was really good because, at that time, I was like I thought you know like sometimes I was thinking, “Oh, is this going to affect my immigration status?” Because silly me, that’s what I was thinking about because I didn’t know like oh it’s something [inaudible] a disease and things like that. So, I was thinking “oh, is it going to affect my immigration status?” So, at the point where I didn’t want to turn up to the clinic. I didn’t want to go there. I just wanted to stay, I just wanted to go about my business and then I think about it. I went there but I was really nervous when the doctor went, when they were taking my details. She had to put me on the system. They set everything up for treatment and everything and then I was like, and he said to me, “Listen, none of this information is going out. We just need to make sure we keep everything private, and nothing is going to be shared except if you want something to be shared. But even if you know us, we see you in public or whatever unless you say help to us, we’ll pretend that we don’t know you, that kind of thing”.

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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.

So, when I first got married, which was in 2017, I hadn’t really thought about children because I wasn’t on treatment this was not possible, well it would endanger the child so that was not an option for me. So, I waited like to see what to do. I had not started the treatment until 2019. So being a mother was kind of not an option for me. But once I started the treatment then I told the doctors that I had, I wanna get pregnant as soon as I can. That that was my goal.

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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.

They told me that it was possible nowadays to live a, a normal life and was just to take, you could just take one tablet a day and it would be, but I didn’t, it didn’t penetrate. It took a while for me to actually realise, it was only after I talked to a nurse, I’d see a lot that I gradually came to understand, I mean she said, "Oh you’ll be able to have children, you’ll be able to", and I, I just didn’t believe her, I was still used to all the things that I’d seen growing up in the ‘80’s… I was going around cleaning things, terrified that I’d give it to my son off a toilet seat or a cup or things like that and it took a long time for me to realise that that wasn’t the case.

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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.

I feel so bad, I feel so disappointed, but the doctor talked to me, and he give me reason for me to take my medications so that I can live long for my kids so even though it was stressful, but I have no choice, I have to live for my kids.

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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.

First, I went into denial, and I had to embrace it because I had to protect the unborn child. My husband did test, it was negative, and I have to protect the family so the first medication they gave me I had very terrible allergic reaction. I had swollen lips; I couldn’t breathe. I had rashes all over me and that affected my sort of trust in the care they were providing then I was in [ward]. So, when I got job in [City], I transferred to [City]. I was very reluctant to commence any treatment because the first one I had nearly killed me, nearly, I survived narrowly.

Even the doctors were, the extent of the reaction shocked everyone. So, then I moved to [City] and met the team here and I think I was it about six months then I started the treatment that I had for that short period, I was taking two pills and it did work, it did work so after my baby I switched to the treatment which I’m now having, and it’s been okay.

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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.

I didn’t anyone else to tell them. I just had that fear that they’d be at someone’s house, and they’d be discussing it and they wouldn’t be discussing it in the right context, and they’d try and use it as a weapon against them, so I let them know. My other sister was my birthing partner, so she had to know because we’d be going to appointments, and they’d be discussing it so. I told my dad, yeah just immediate family. It wasn’t till the stigma really started after I had my daughter.

In what way?

Not, people not being knowledgeable, circumstances, this is like later, later down the road, not like within months or weeks of me having her. It was just a long-time cos my family who did know, were like, ‘I think you should stop telling people. It’s not everyone’s business. It’s yours.” And they gave very, very good valid points but I didn’t actually realise they were cutting off a part of me that made me depressed and anxious, and I didn’t like in a way having to lie to people.

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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.

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