Feeding a baby while living with HIV
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).
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.
Maria finds it difficult that she does not know how she became HIV positive (played by an actor).
Maria finds it difficult that she does not know how she became HIV positive (played by an actor).
To be honest it just, in the, the only way, my only closure was not to think about it, I take my medications on time, I go to my appointments, but other than that I just try not to even think about it because it does upset me and even now like ten years on I still, I just don’t know how it came about, I’m just almost like, you know, ‘why me’ but, so I think the only way I just cope with it is not to think about it.
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.
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 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.
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.
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.
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.
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.
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.
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.
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.
Deborah felt it was important to accept her HIV diagnosis (played by an actor).
Deborah felt it was important to accept her HIV diagnosis (played by an actor).
To be honest it was just, just not something I was expecting, I told myself that I can’t remove it. There’s nothing I can do. I have to accept myself.
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).
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.
Stephen learned more about HIV after his partner, Holly shared her HIV status, but was not bothered about her diagnosis.
Stephen learned more about HIV after his partner, Holly shared her HIV status, but was not bothered about her diagnosis.
Yeah, kind of I, when I first found out I was like ‘okay so what’, and I kind of learnt about it quite quickly like being sort of undetectable and what that actually means and how the medication works and all that sort of kind of scientific side. And for me it works as far as I’m aware of the research that’s gone into this kind of the drugs which people take with HIV have and how it all works and kind of all the trials that people are going through. It seems to be kind of yeah, it’s, it kind of doesn’t really bother me to be fair.
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.
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”.
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.
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.
After the initial shock from being (wrongly) informed that she had 10 years to live, Tina learned that taking the latest HIV treatment would keep her well.
After the initial shock from being (wrongly) informed that she had 10 years to live, Tina learned that taking the latest HIV treatment would keep her well.
Obviously it was, how long, that was nearly 15 years ago, so the test result were reported to me from a sexual health clinic and I remember at the time the guy who, I don’t remember his name, who told me my diagnosis said that, you know I think sort of ‘oh you’ll have at least ten years’ or something like that. So obviously at, at the age of however old I was then, I can’t remember 21 or 22, but that was quite a shock but very quickly when I actually got referred to the consultant at an HIV clinic obviously got the better and more informed information. About, I was told about how good drugs are and how good the education is, all the research that’s been doing, you know, and, and you know, life longevity you know, usually is, you know, the clinical approach is no more for people who don’t have HIV and you know, was much more positive. And then as I say they had counsellors so just to help you, you know, chat about the diagnosis and things like that.
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.
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.
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.
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.
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.
Lana was diagnosed during her first pregnancy and wanted her medical team to think about her needs as well as her unborn baby.
Lana was diagnosed during her first pregnancy and wanted her medical team to think about her needs as well as her unborn baby.
I think everybody was just concerned about, ‘Oh you’re six months, you’re getting to a very risky period. We’ll have to bring the viral load down to keep the baby safe.” How I feel about working wasn’t really considered.
And I think all of them boiled down to what made me have depression when I had the baby because I had a very terrible depression, and I struggled a whole lot before I was able to adjust.
So, it was just about the baby, you know, bring milk for the baby. Everything was about the baby. It wasn’t more for me I feel like I wasn’t existing exactly just, ‘We’ll give her tablet, let’s take care of the baby.” That’s how I see the whole thing.
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.
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.
Holly was advised not to tell many people when she was first diagnosed with HIV (played by an actor).
Holly was advised not to tell many people when she was first diagnosed with HIV (played by an actor).
Yeah, I mean there were a few things like really remain with me, the lady who immediately diagnosed me then and then and there said ‘don’t go around telling everyone’ and that was really valuable yeah advice I think, so I only chose to tell, you know, a few individuals really and so like family, my housemates at the time and some key people from my job.
Sherry’s relationship broke down after she told her partner about her HIV diagnosis.
Sherry’s relationship broke down after she told her partner about her HIV diagnosis.
When I was having a partner, my husband, not my partner, I was married so my husband left me. He wasn’t having it, any of it, so along the process he left me when I lose the baby, he left me, so.
Eriife shared her HIV status with her boyfriend at the time, who later became her husband.
Eriife shared her HIV status with her boyfriend at the time, who later became her husband.
It was not easy; it was not easy at all because thankfully he’s the only one I’ve- I had to tell. I didn’t have to go through many relationships and then loads of people know my situation, which, to be honest I feel relieved, but he took it; he was very surprised to be honest. I think he was in a bit of shock because I kept telling him, “I have to tell you something very important,” and he think he just thought I couldn’t have children, so he was like, “Okay that’s fine. Is that it?” [laughs]. So when I did tell him, he had no idea obviously what it is, how like, yeah and obviously, all he has heard obviously is what is in the mainstream news and stuff, so I had to first explain and stuff like that and I had to ask him not to tell his family, because he was going to tell his mum. I said, “No, we’re not married, so I don’t think I want that. So, waits, let’s get married.”
Other people will know my business, so I had to ask him to keep it to himself which he respects. And yes so, he, what I did do is to just kind of help him with information. I organised a meeting with my doctor with him so that he could like explain in detail and answer any questions that I couldn’t answer that he had. Yeah so, we booked our meeting, and I was willing to not even be there to be honest, but he wanted me there. And so, he asked the doctor all the questions he had and yeah and the doctor answered the questions and yeah and that was that and to my surprise he took a, he took a test without me knowing and he just messaged me, ‘oh I’m negative.’ I’m like ‘for what?’ So, you know, it just to kind of let me know I’m with you in this kind of thing.
Pauline needed to hide the real reason why she was taking HIV medication (played by an actor).
Pauline needed to hide the real reason why she was taking HIV medication (played by an actor).
When she asked about my medication, I told her it was during pregnancy, they knew I wasn’t well throughout my pregnancy I had really bad nausea and all that and I even had to get iron transfusion so I told them it was because of that because before that they didn’t see me taking medication regularly, but yeah after the baby they realised I was always taking medication so when they asked me, that’s what I said.
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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