Joyce

Age at interview: 36
Age at diagnosis: 30
Brief Outline:

Joyce formula feeds her baby and she believes it is going well. Although her HIV is undetectable, she did not want to take any risks with HIV transmission. Joyce receives free formula and peer-mentor support from a local charity, which she finds very helpful.

Background:

Joyce is in a relationship and she has three children aged 5 and 3 years-old, and a 3 week old baby.

More about me...

When Joyce migrated from West Africa to the UK in 2015, she was diagnosed with HIV during the health screening process for asylum seekers. She was referred to a local HIV charity when her test came back positive.

Joyce was very scared when she learned her status, based on things she had heard about HIV previously. However, her medical teamed eased some of her concerns, and told her she would be fine so long as she took her HIV medication.

During her first pregnancy, the national guidelines advised against breastfeeding. Joyce has chosen to formula feed all her children, even though the guidelines have changed since then and allow breastfeeding as an option under certain conditions. She thinks the new guidelines are good but chose to avoid all risk of transmission by formula feeding. She still believes the risk of HIV transmission via breastmilk must be higher than what is claimed.

Only a “couple of people” know her HIV status. One of Joyce’s friends ended a friendship when she learned about another person’s HIV status, and so Joyce is scared to share hers, because of this kind of HIV stigma. Joyce told fellow church members that she had difficulty breastfeeding which is why she did not do it. Joyce’s partner is supportive of her infant feeding decision and is aware of her HIV status (although he himself is negative). When she originally told him, he left at first but came back after two months.

Joyce received all of her infant feeding information through her medical team. She trusted them and did not feel the need to seek information elsewhere. Joyce described formula feeding as “fine” for all her children. She received free formula milk from a local charity for each child, up until they turned one-year-old. This eased her financial worries; she thinks she would have considered breastfeeding without the financial support. Financial and peer support at the HIV charity helped Joyce when she “was down mentally” as it “takes off some pressure”. Generally, she has also found her interactions with medical staff quite good.

 

Joyce felt a societal pressure to breastfeed but had developed strategies to explain why she was not breastfeeding.

Joyce felt a societal pressure to breastfeed but had developed strategies to explain why she was not breastfeeding.

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You know, the society we live in most people around me like my church members, they wonder why I don’t breastfeed. Anyway, I don’t really keep friends because I don’t want people to, you know, to keep asking me a lot of questions, what if they keep prying, they kept asking me why don’t you breastfeed and since I don’t want, I don’t want to disclose my status with them I just told one or two person that I have this condition that whenever I’m pregnant and that for real this black stuff that affects me, my whole boobs, my nipple area is very black and falling off so I can’t breastfeed my baby so it’s such, yeah so I just have to put up that story.

That’s the reason why I bottle feed. And bottle feeding, formula feeding, yeah, it’s really good and it’s helping me so far so good so and I missed out breastfeeding, but all the same I don’t have any reason to complain, I’m just grateful to God that at least I’m able to have kids and for my feed them and they’re doing well so that’s it.

 

If Joyce’s HIV clinic had not referred her to an HIV charity that gives her formula milk for free, thinks she would have stuck to breastfeeding.

If Joyce’s HIV clinic had not referred her to an HIV charity that gives her formula milk for free, thinks she would have stuck to breastfeeding.

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Oh, yes for, until the baby is a year so you can imagine what it would have been like without support, you know, if there was no support, I bet maybe most of us would stick to breastfeeding, you know.

 

Joyce described the impact of hearing her friend talk negatively about people with HIV.

Joyce described the impact of hearing her friend talk negatively about people with HIV.

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I don’t know, you know, some people like were Af-, where I come from, my place [community] in Africa, okay there’s this lady that she was very close to me, and she was telling me of someone that the partner is HIV positive, and she said she stopped getting close to her because she’s HIV positive. So, I was trying to explain to her that you don’t get HIV by getting close to someone that is just through blood transfusion but she refused to listen so you see it’s due to such things I don’t disclose, apart from my medical team, my partner and my just family members, no, no other person. But I’m scared of stigmatisation like, you know.