Interview with Jane Shepherd, a woman living with HIV who was diagnosed in the 1990s.

How long have you been living with HIV?

Since 1990. I was about 30 years old when I was diagnosed.

How did you find out?

I found out by getting a test in an STI clinic in central London, it was in a basement of a London hospital.

It’s so interesting to me that you were tested in the basement of a hospital, which is where you usually find the morgue and those types of things.

Yes - it's where the taboo things go, the things that mustn't be seen. You went down some back stairs, like a dark stairwell. It actually had tiles, like old toilet tiles, as if it had to be easy to clean. It was quite hidden down a side street. I think there was a queue and you sat on a hard chair and shifted up each time someone got seen.

Which is such a stark difference to our now open, bright sexual health clinics that look just like normal waiting rooms. So, did you decide to go yourself  and what was testing like back then?

I had a friend who thought I should go. It was just a blood test and then a long wait – three weeks for a phone call. They either called with a negative result or you had to go in if it was positive. Once I had received that phone call, I had to go to the Kobler Clinic in London.

Back then, you weren't allowed to give the results without counselling, so I saw somebody straight after the result. I went to see a health promotions officer and she gave me the number of a support service for women called Positively Women.

I was also told I probably had eight years to live.

I know you knew about HIV before having the test, but being hit with 8 years to live must have been quite mind blowing?

Yes, it was! The thought that I would die a very horrible death and it would be very stigmatised, because by 1990 people knew what happened if you had AIDS.

Once I was told I was diagnosed, I never looked up anything to do with AIDS. I just thought, I don't want to know. I think it was a survival tactic as I don't think it would have helped to have known all the different things I could succumb to.

What do you think is the most positive change you have seen with testing over the years?

The two brilliant things are, of course, the discovery of treatment in 1996 and the more recent discovery that if you take treatment, you are not infectious – meaning you can’t pass HIV on. I think those two things have worked to make testing something that's much less scary for people. I guess a third one is that testing is so much more accessible. We have rapid testing, so you don't have to wait weeks for results. And you can get tested in various places.

As a peer supporter, I spoke to a young man recently. I told him, you just have to take one pill a day and you can have a normal lifespan like anyone else. He said, are you sure, that’s all there is to it? He thought his life was ruined and over.

Did you know many other women living with HIV at the time?

I didn't know any other women when I was diagnosed. But the first thing I did was make an appointment with a support group for women living with HIV in London. I used to go every week – a group of about six of us. I just thought, wow, seeing other women getting on with their lives. I just thought, Oh, okay, so I could do this too! It gave me that strength to get on with the life that I was going to have. I've met lots of amazing women through that group, and it became a network of women living with HIV across the world.

What has your experience been as a woman living with HIV?

It's been isolating and quite lonely because there hasn’t that been much organised support. I think inequality makes it difficult for women to negotiate a pleasurable sex life. I suffered with low self-esteem because of being diagnosed with HIV. I definitely felt stigmatised, and I ended up in relationships that weren't very good for me. I think that's a fairly common experience for women with HIV. I felt a lot of finger-pointing and blame as a young woman who was living with HIV and sexually active.

I think women still experience real difficulties around dating and meeting people and talking openly about it. Women are often the first ones to be diagnosed, especially through pregnancy, and this can open the door for men to blame women.

What can people do to be the best ally for supporting people with HIV?

Be informed - number one. Be up to date with your facts. If everybody who learnt about U = U told five other people, we could soon get the message out.

Have an open mind. Nobody sets out deliberately to get HIV. We are all just human beings. We don't deserve any more judgement than the next person. 

Always make sure that people living with HIV are included in decisions about HIV and the things that affect our lives. That's a good way to be an ally.

Do you feel as a woman, within healthcare, that your health issues can be overlooked or under researched due to being a woman with HIV?

A big issue would be pharmaceutical research, I think that has always been overlooked, the effect of medication on women's bodies. The UK HIV sector has been quite good with research priorities, often due to lobbying from women living with HIV.

There’s been a lot of advocacy to get our voices heard.

For example, look at the menopause. Women with HIV are living longer and the menopause has become an issue for us. I think menopause can be very confusing for women living with HIV because the symptoms of menopause can feel like it might be HIV medication side effects.

Do you feel attitudes toward people living with HIV have changed over the years?

I'd say there's quite a big leap from the 80s and 90s. But it has happened gradually and I'm still shocked when people say things like, “How can you have HIV? You look too healthy.” People still think that we are going to pass HIV on, that we are walking viruses. I think there's still a lot of stigma. It's probably just a road we've always got to go down and work on.

There might be a tipping point where it suddenly becomes normalised. Could be another celebrity coming out in the open – that's a good way to get it into the media. Much like Gareth Thomas did, that really helped. Or another TV drama like ‘It’s A Sin’

Yes. I was going to ask you about It's a Sin, did you enjoy it?

I was reluctant to watch it for a bit. The episode when he went back to the Isle of Wight to die, I just sobbed. It just brought it back to me, that era, and I felt like I was back in those days when women with HIV were not talked about, because there's no women in it. So many people died lonely deaths and it left a lot of people deeply traumatised.

There are similarities with COVID. People dying in hospitals and not being allowed to have visitors, not being able to go to your relative's funeral. We can see how traumatic that is

What would you say to someone who is fearful of getting a HIV test?

It's better to know than to not know, because to not know is to carry on through life not getting the treatment that you need to keep you healthy and stop you passing it on. And if you do test negative, then at least you can get information on how to protect yourself in the future.

We have PrEP information on our website - PrEP is FREE, confidential and easy to access.

Breaking down the stigma is part of encouraging testing. Sex is something we all do and it can be fun and pleasurable. People should not feel any shame or stigma around going for a test or accessing PrEP. Talking about HIV and other STIs can be difficult and stigmatising attitudes just make it worse. Back in the days when I got tested, most people found out through illness or a partner dying.

Whereas now it’s a routine part of STI testing, and HIV tests are included in our FREE, home test kits that can be delivered right to your door.

Yes! It’s so much easier now. Unfortunately, I don't think it's on women's radar because it's still considered less of a risk for women.

Whereas we know, HIV doesn’t discriminate – it is a risk for everyone.

Thank you so much for answering all my questions, I have learnt so much and really enjoyed your passion, knowledge and hearing about your experiences.