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Susan: Battling self-blame after an HIV diagnosis

Susan came to the UK from Malawi in 2002. She was diagnosed with HIV in 2008, and is currently waiting on her application for asylum. It was scary. It’s still scary. I didn’t know what I

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Susan came to the UK from Malawi in 2002. She was diagnosed with HIV in 2008, and is currently waiting on her application for asylum.

It was scary. It’s still scary. I didn’t know what I was going to do. I just thought that was it, life was over. At the time you’re not thinking straight. You’re confused. You can’t even tell your family, you can’t even tell your friends.

I was self-blaming. I didn’t know how to live with HIV. It was a big, big challenge.

For people who have been newly diagnosed, the most important thing is knowing who to talk to. You need to know who can tell you what services there are. Talking to a stranger is a lot easier than talking to someone you know. Of course the hospital does tell you, but if it’s coming from someone who’s living it, then it’s better that way.

I searched for an HIV support group and then started attending one. It wasn’t a very good one at the time, because when I went there some people were really ill, and that just made me really sad. It just made me think, “that’s gonna be me”. So I stopped going. Maybe I didn’t want to face the reality at that time.

A year after that, that’s when I moved to Glasgow. At that time, my own coping strategy was to wake up and forget that I had it, and then just get on with it. Then only at night when I’m taking my meds would I remember.

The shame and guilt attached to HIV

It’s not easy. You have your HIV diagnosis at the back of your mind, it’s there. It’s there, it’s in your head. I managed to forget it, and then eventually, I became pregnant.

I didn’t even want it. I was like, “I don’t know whether the child will be okay. I don’t even know how I’m going to survive.”

The thing about it is that the information is there to say you can survive the pregnancy and the child can be born negative, but the fear is there in your head. It’s about conquering that fear. I’m a Christian, so I had to keep the pregnancy but every day was a struggle. I was just like ‘why am I keeping this?’ It was the hardest pregnancy ever.

At the time I had a partner who wasn’t supportive. He was very, very abusive. I was blaming myself for keeping the pregnancy, I was questioning my religious beliefs. When the child was born I struggled a lot and I developed post-natal depression.

Being pregnant is really the most exciting thing, but then, with all the uncertainties, it wasn’t that good.

I am recovering from that now. I have recovered from it, but it took a lot of effort and determination to say, “I want to be out of this, I don’t want to be like this.”

Sometimes it comes and goes, it doesn’t go away completely, but it’s not as it used to be.

I’ve accepted it, but I also struggle about disclosure, like forming other relationships. When you disclose, either people will walk away or they’ll stay. I am beginning to understand that if they walk away, then it’s not my fault because living with that secret is also very pressurising.

Now I work as a volunteer at the Brownlee Centre. I do understand what HIV is. I’m quite aware of it. I do peer support for people who have been newly diagnosed. If they want someone to talk to, then they can say to the nurse or the consultant that they want to speak to someone who’s been positive and getting treated for some time, and then they’ll link you up. It is challenging but at the same time you want to just reassure someone, even though that does come on it’s own.

Even though someone is telling you at that time, you don’t feel like they’re telling you something that you’re gonna get used to, but over time, it does come over time.

Get tested and treated for HIV in Glasgow

The Brownlee Centre is based in Glasgow and offers free HIV testing and treatment. For more information, call the Brownlee reception on 0141 211 1074 or write to Brownleehiv@ggc.scot.nhs.uk. To visit their website, click here.

For other HIV services based in Glasgow, visit Terrence Higgins Trust Scotland and Sandyford Central.

1000women@naz.org.uk

1000women is a platform for minority ethnic women to tell their own stories, on their terms. To find out more about joining the team or sharing your story, write to 1000women@naz.org.uk

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