When were you diagnose and how did you feel at the time?
2009 I was just about to turn 31 and it was really bizarre circumstances, everyone’s got a story, mine’s just as unique as a anyone else’s. My husband was diagnosed first so I guess at that point I pretty much knew but I was told my a consultant on a completely different ward. A neurologist told me. I knew there was a really good chance I was positive. I was shocked more than anything. I had had a child with him as well. I was worried about that more than anything else. You don’t think about yourself do you? I was diagnosed two weeks after my husband. I just knew, I just knew. I was really ill when I was diagnosed. My CD4 was 94. I was ill, I was really ill. I had pneumonia, skin terrible, thrush, ulcers. In a way there was some relief to see a reason I was ill. I was shocked. I wasn’t scared or sad, I just didn’t have time to be. I had a husband in hospital, a full time job and two small children. I still haven’t cried about it. Shock, scared for my children, scared for the future. At the point I told my GP, the specialists at Southmead were involved. I went out to see them in a daze. I got a phone call about my CD4 and there was no choice but to go on medication immediately for me. I struggled further on from that to understand how other people choose to go on to medication. I sat in rooms with Bonnie from THT for hours asking ‘How do people choose to do that?’ Medication was the hardest thing. It was late at night, the children were in bed, my husband was still in hospital and in my bedroom and I’m looking at this bottle of tablets thinking ‘that’s it, once they go in your mouth, that’s it forever’. That was really weird and hard to accept. I still don’t know why I found that so hard. That was the hardest night for me: I didn’t know what they were going to do to me, I’m never going to be without them. I think I was concerned about the effect they were going to have on me, because you hear about the side effects. And I was concerned about the child that was my husband’s child.
Can I ask did you get your children tested?
Yes, the older one just because and the younger one because she was my husband’s child. I was actually advised by the consultant at Southmead not to have her tested but I couldn’t live wondering about every cough and every sneeze. I put it off for a few months until everything has settled down. They were both negative.
We had enough information to deal with it. When I was diagnosed all the info came rushing back to me. The info I had at school was really good compared to a lot of people. It helped when I was diagnosed.
Did you get any support when you were diagnosed? Did you reach out or need it?
Yeah, I did. Bonnie from THT was involve with my husband and then started to talk to me and introduce me to the women’s group and that’s all the support I had until now. I remember coming into contact with Brigstowe but no direct support for me. I have been involved with things Brigstowe deliver services further down the line.
You’ve mentioned the women’s group already, and we have international women’s day on the first of March. I wanted to talk to you about the particular challenges of living with HIV as a woman?
We probably self-discriminate more than men do. We think we’re dirty or tarnished in some way. We naturally assume we’re going to get a reputation. I’m not saying it’s not difficult for men, it is. But I think women are judged in a bit more of a sexual way than men and questioned a lot more. I think we’re naturally more emotional and hormonal. We have to be mindful of how HIV medication interacts with that. And of course, we have other health considerations as well, like smear tests. I think the children thing is big. When I was told I was positive, being told I could have a child was the absolute everything. Even if I didn’t want one, to know I could have one. TO be told I could was huge. When I go and do workshops, the men be gay straight are also bold over with that. I went on to have another baby, and she’s negative. I still see a lot of women who carry a lot of old information and want cisareans because they think it’s safer. Why would you want to have major surgery? And research now tells us it’s not the safest option. I think it’s great women can have natural births but I see a lot of women who area really frightened to because it’s going to make the baby positive.
Being a mum is also hard in terms of your HIV. You’re the person who collect the children from school. As a mum, it’s more likely to be you in that school playground, it’s more likely to be you that gets talked about. The guilt of having done that to that child, it’s in a local area.
It sounds like you think there are added stresses for women, perhaps particularly in they have children or they are thinking about having children. It also sounds like you are impassioned about getting all this correct info out there about being able to have a negative child and have natural births.
My youngest is coming up four so it’s not that long ago that I had her. I was concerned about how I was going to be treated. I was worried. But nothing was different. I has one extra appointment. No one mentioned it in hospital a part from once. The midwife when I was being induced was really curious, in a good way, in an educational way. I didn’t want it in my notes that I carried around with me. I think they wrote retroviral illness, something like that. The community midwife, labor ward midwife, liaised with each other. No one mentioned it out loud. It was a really nice experience.
Sounds like a great experience, that they were really mindful of your needs.
No one made me feel uncomfortable. It was really nice. And that’s where the women’s group comes into play because obviously…. I have met women in women’s group who were having their first child and obviously I had two already but I had questions for them about how I was going to be treated in hospital now I had HIV. It was nice to have that support.
I was going to ask you about the women’s group. THT have been running this group for ages, I think 25 years or something now. And you’ve been involved since you were diagnosed. How have you found that?
Initially, not easy. You can’t make the assumption you’re going to make friends just because you have this one thing in common. What hit me the first time was just how different everyone was. It was hard for me to form relationships in the very beginning/ It took a while going and persisting. And talking to lots of people to form friendships. When you first go, you’re in this state of shock. I think I was desperate to meet someone like me, and I didn’t go in there and meet someone like me so it was quite hard. But now, oh my goodness, the people I meet are so inspiring. From all different places in the world, all different backgrounds. It just makes you think ‘it doesn’t discriminate’. People Just have such amazing stories, I met the most amazing people, from the most amazing places and it’s so nice. I met a lady that I talked to for a couple of years at women’s group and then we were asked to talk together about our experiences, two years after meeting each other. And we’d been asked to train these volunteers at THT and we were laughing and they were looking at us horrified. And she was going” everyone thought I was a bloody stupid cow for having an HIV test cos that’s how it is in Africa” She was saying it like she was a stand-up comedian, so I was crying with laughter. And that I was saying – so I’m divorced from the person who gave it to me now – and I was saying “I didn’t divorce him because of that, I divorced him because he’s ****”. So she was crying with laughter. And the volunteers were still looking at us horrified. But that’s how it is, people come to women’s group and burst in to tears but you can guarantee they’ll leave laughing, like there’s hope. There’s nothing that one of the women hasn’t gone through, that one of the other women can’t empathise with. There’s so much laughter and tears. I don’t want to generalise but we do deal with things different to men and that’s what a woman will do, we want to talk about it. That’s what women’s group gives, a space to talk about it in a safe confidential space.
It sounds really special.
It is really special, and I don’t know what we’d have done without Bonnie keeping it going. I don’t know what we would do without it. I have formed lifelong friendships through it. And it’s also just a really nice day. We might do yoga, we might do something creative, disclosure conversations, sex conversations. MAC Make up comes once a year. Even if all you do, is run into the toilet and take a selfie for your facebook profile.
We do lots of feel good things and lots of opportunities to talk about what you need to talk about it.
I imagining a women who is newly diagnosed and hasn’t heard or come to women’s group, what would you say.
Try it. Meet people. It’s such a unique experience to be able to go into a room of women who have come from all different parts of the world, different backgrounds and actually see how they have moved forward. You will relate to somebody there. Everyone has a different jobs, some people have kids, some people haven’t, people have different types of relationships but somebody will have experienced what you’re experiencing right now. Someone will have experienced what you’re experiencing.
9/10 women in women’s group it will have changed their life for a positive reason as well as a negative reason. For example, I had a career change. I left my job to become a full-time mum because I needed to be with my children and experience that. But I couldn’t then go back to what I used to do. I wasn’t enjoying it anyway. I retrained and I was aiming for a career that made me really happy and I don’t think I wasn’t diagnosed with HIV. I wouldn’t have gone back to college and retrained. known all these amazing women, it opened my mind and opened my world so much more.
Just try it.
So you’ve just mentioned dating.
I think as a woman we have that concern to have to share that information with someone that’s negative. To tell someone negative that you’re positive is almost similar to being told yourself, they would might have this massive reaction or not like you may or may not have. It’s nice now we’re in a position where we don’t have to legally tell someone because there is absolutely zero risk of transmission and that’s been proved which is amazing. Going back over the years we’ve all had these choices of what to do. I myself chose not to date a man who was HIV negative. I went on to the HIV dating website hoping that it would be this wonderful experience because it’s a niche market, that there weren’t going to be any weirdos, that there were going to be HIV+ men looking for HIV+ women who are looking for HIV+ men. I was thinking “it will be great”. And to certain extent it was. But there are still weirdos, so that was a big fail. The positive men I did meet, it was great. I went on a date and I could talk about anything else. If I was dating an HIV- man, even if they accepted it, they would want to know the whys and the wherefores, they would want to know how you got it, who wouldn’t, its human nature. So actually, to go out with an HIV+ man and just be able to talk about normal things was great. It would happen, but there was no rush or no need for it to happen. You could talk about that later on. I’m all for HIV+ dating! The PARTNER study has been game changer for positive people. Because it means we can be with someone negative without any risk or need of telling anyone.
And you’re with an HIV- man now and you haven’t disclosed because you don’t have to.
I might, I might one day. I don’t know if long-term I can live with that sort of secret. He knows I take medication and I have so far as saying that I have a problem with my immunity. I have never had to lie to him.
If you were to leave us with one piece of advice or fact for women living with HIV, what would it be?
It doesn’t change your life expectancy. You can live a long, healthy life. But it can change your life for the better.
THT’s Women’s Group was set up over 35 years ago and still continues to support women living with HIV. The group runs on a Saturday bi monthly from 11.30am until 4.00pm. The group covers a range of activities, from talking about disclosure, relationships, women’s issues, yoga and art. It’s a safe and confidential place to share life experiences, sadness, joy and laughter.
If you would like to know more please contact Bonnie from THT on 07835 855481 or firstname.lastname@example.org
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