Media Partners | Contributors | Advertise | Contact | Log in | Tuesday 23 July 2019

'World AIDS Day? It's a time to remember that we are still alive and kicking!' Living with HIV as a student

27th November 2013

Share This Article:

Whilst most third year students are worrying about dissertation deadlines, applying for jobs and squeezing in as much last minute partying as possible, Serena* was coming to terms with the fact that she was HIV positive.

What is it like to receive this life-altering news at the age of 22? How do you reveal your condition to those closest to you? And how do you reconcile such news with the more mundane aspect of student life?

Sunday 1st December is World AIDS Day, a day in which people from all over the world come together to raise awareness of HIV and AIDS and breakdown the stigmas still surround the conditions.

Serena, who was diagnosed as she began her third year at university, attends sessions at the Body & Soul charity in London – a place where those with the condition can come together.

She spoke to us about what it means to be a recent graduate with HIV, the myths that still surround it – and how she isn’t going to let it affect her life.

Do you know how you became HIV positive?
Yes, I believe I acquired HIV through sex with a regular partner. I had always been careful as I had seen the film 'Kids' by Larry Clarke (a girl finds out she has HIV a year after losing her virginity; it was the only time she had had sex) and was traumatised into always having protected sex where possible. Up until my diagnosis I didn't know what it was like to have unprotected sex as I had only had it a handful of times. But the one time I let the person I was seeing have unprotected sex with me, I went to the clinic and did the responsible thing of getting checked and got the morning after pill... that was when I got diagnosed.

How are you treated medically?
I am on anti-retrovirals. I take four pills once a day everyday...which is a great medical advance from how ARVs used to be taken. It’s amazing to think those medicines keep me alive. For all its faults, thank goodness for the NHS for providing access to free HIV medication so that we don't have an AIDS problem like parts of America and the rest of the world.

Do your friends and family know about your HIV status? If so, what has been their reaction?
Well, only a few family members know and close friends. I'm ok so there's no point in people worrying about me. All reactions have been positive. When I first found out, there were a lot of tears from my best friends, cousin and mum, but I remained numb.

One person didn't take it well at first because they didn't understand it wasn't that easy to transmit it to them, but once they got the facts from a medical professional they respected me for telling them and now we're best friends.

I always try to disclose to potential partners before getting intimate because I can't deal with guilt and so far, I have been very lucky to have had such understanding open-minded men in my life and I thank them for that.

How did you reconcile being HIV positive with university life, particularly with the comparatively minor problems your friends might have been having - essays, lack of money, etc? Did you feel frustration?
Well, I got diagnosed going into my third year of uni but it kind of got overshadowed by back problems. I developed sciatica from a slipped disc and was in agony to the point I couldn't walk. I was doing a very practical degree and so I had to stop uni and work. I wasn't getting the solution I needed here to fix the agony I was in because I'm allergic to aspirin, and I didn't think I could take anti-inflammatories because of my status. My GP was unhelpful so I eventually went to the homeland of my father to see other doctors for nine months.

Two years after suspending it I went back to try and finish my degree but I still had pain in my back and leg. So, my mum set it up for me getting assessed for Disabled Students’ Allowance. That helped massively because I got a computer, internet and design software to help me do my uni work if I was in too much pain, too weak or too ill to go to uni, and at the crucial time of trying to finish my major project, I got help paying for my cousin to pick me up from uni with all of my uni work and I also got a technical assistant to help produce my work.

However, I started my HIV medication around winter of my final year and it instantly made me feel ill when I took it. I had to take it as close to bed time as possible because the side effects would make me feel drowzy, dizzy, nauseous, and I would get headaches and severe stomach cramps and so could sleep it off when they had subsided.

So, not only did I have a bad back and leg which would obviously hinder my work, I would go home and feel horrible when I took my medication. I was also having relationship and family problems. It wasn't easy but passing my degree was my focus to get me through it. I blocked out everything to focus on uni. I didn't want to be £20,000 in debt with nothing to show for it.

Was your day to day life at uni affected?
Yes, because I was in pain, tired, overwhelmed and under pressure. I had to get deadlines extended for all uni coursework. My status just added to uni pressures and none of my classmates knew or understood. Because my status was still relatively new to me, I was still dealing with it and so when uni was too much, it made me feel more sad.

Do you personally feel like stigma towards those living with HIV is lessening – or is it still evident?

Ummm... yes and no. There are a lot more people who are educated and open-minded about HIV but there are still a lot of people who are ignorant about it. There are still a lot of misconceptions and there’s a gulf between what people know and how they act – a campaign I was involved with called Life in my Shoes through Body & Soul found that while 81% of the young people they spoke to knew HIV couldn’t be transmitted by sharing a cup, only 27% of people said they would actually drink from the same cup as someone they knew to be HIV positive. That’s the thing that needs to change – attitudes, because a lot of the time, the knowledge is there, but people don’t act on it.

What do you think the biggest misconceptions about HIV are?

That you can tell by looking at someone if they have HIV. That HIV = death. That only gay or African people get HIV - but I am neither from the LGBT community nor am I African. That HIV automatically leads to AIDS. That you only get HIV through sex. That you can get HIV through kissing, which is just ridiculous as there has never been a report of anyone acquiring HIV through kissing. There isn’t just one – and in their own way, they are all equally damaging.

Do you broach the subject of HIV with strangers, or those you’ve just met? If so what tends to be the reaction?

Yes I do, because I have gone on to work in sexual health. I am knowledgeable about it so I am confident to talk about it. A lot of people have said that they would kill themselves if they found out they had it, but you can live a normal life as long as you look after your body and your mind and take your HIV medication properly. I have also heard people say that they would kill someone if they gave them HIV. At the same time you need to take responsibility for your own sexual health and make sure you protect yourself and wear condoms. Condoms are the only form of protection against STIs, HIV and pregnancy… it’s like my mantra!

Did you tell other students? If so, how did they react?

I happened to have a really good friend from secondary school in my class and I told her not long after I got diagnosed because I knew she would be open minded. She started tearing up when I told her but she was the only one at uni besides my course leader and a couple of tutors who knew. She was my friend so she was supportive but I didn’t feel safe telling more people – the more people who know, the more you risk someone telling everyone.

Have you met other people living with HIV– through the charity or elsewhere?

I grew up knowing that a family friend is positive, he has been living with it for about 30 years. I have met a lot of positive people through the support groups I go to at Body & Soul. I have a close knit circle of friends there; we're more like family. We understand each other when the rest of the world doesn't. I also met people on the positive self-management programme run by another charity called Living Well, which helps you to manage being positive.

Do you think campaigns such as World AIDS Day have a positive impact?

Yes, because it reminds us to remember the souls we have lost to AIDS. Also for those of us who are positive it's a time to remember that we are still alive and kicking and to be thankful but more importantly, it's a wakeup call for everybody else to remember that HIV is real and not going away and that you need to know your HIV status. It’s also so important though to update the image of HIV and people’s understanding of it - to let people know that it's not a death sentence, it can be managed and that people living with HIV are not monsters who are carrying around the plague, we are human beings. Hatred is a virus!

How is the Body & Soul charity helping you?

Body & Soul is an amazing charity that spreads love, gives people hope and helps people pick up the pieces and put their lives back together. You feel the love as soon as you walk in the building and from every member of staff, especially the founder Emma. I am where I am today because of the support and encouragement I have received and I will always remember that, and can't thank them enough.

For more information about HIV, including some myth-busting facts, visit the Body and Soul website here.

To donate £2 to Body & Soul text NICE13 £2 to 70070

*Serena’s name has been changed to protect her identity

© 2019 is a website of BigChoice Group Limited | 201 Borough High Street, London, SE1 1JA | registered in England No 6842641 VAT # 971692974