Interview with David Jackson-Perry

This is the shortened version of the French Positive Life Podcast. Listen to the interview in full length in French.

Let me introduce you by your full name: Ellen Cart-Richter. I know that it's important for you to live openly with HIV. But that wasn't always the case. Six years ago, you experienced what you call the "tsunami of diagnosis". What do you mean by that?

I was scared at first. From 1986 to 1990, I worked as a nurse at St Bartholomew's Hospital in London on one of the first wards where people with AIDS were treated. After my diagnosis, the first thing that came to my mind was the three people who died in my arms as a result of AIDS. That was my first reaction to the HIV diagnosis: I'm going to die.

As a carer, didn't you know about the new drugs?

I knew that the effectiveness of the treatment had greatly improved. But I don't come from an infectiology background. So I wasn't up to date with how much the situation had improved. Besides the fear, I had a huge amount of anger towards the person who had infected me because I stupidly thought that person was to blame. In the beginning, I was desperate to find out who it was and that broke me.

This fear, this anger...?

Exactly! It didn't help. The anger disappeared when I realised that I could have infected other people without knowing it. I was diagnosed in 2017. A lot had happened up to that point. My marriage had ended and I was already in a new relationship. I didn't know about my diagnosis, so I could have infected other people without knowing. When I finally realised this, my anger completely disappeared.

When I finally realised that, 
my anger completely disappeared.

And what replaced this anger?

Unfortunately, this anger turned into shame. I come from a very religious, evangelical background where the very fact of being divorced is a great shame. Not only my family, but also all my friends were closely connected to the church. The fear of possible judgement from those around me led me to start hiding my diagnosis. So I couldn't confide in those closest to me, the people who were normally supposed to be my support - because I was afraid of rejection.

Today you are at a completely different point. What has happened?

This change came with knowledge: I understood that I'm not going to die and that I have a normal life expectancy. I take one tablet a day in the evening and no longer think about my diagnosis. From then on, the disease itself was no longer a big problem... but the secret around it was.

There are two types of HIV: "medical HIV", which no longer worries you. The "social HIV" is a lot more difficult. Something that was bothering you at the time was who to tell and how to tell.

In fact, I didn't want to tell my children anything at first because I didn't want to burden them. But the fact that I was no longer afraid myself made it easier for me. I first told my eldest daughter when we were travelling for a weekend. We drove for ten hours together and had enough time to talk about it as a couple. And a short time later I told my two other daughters too.

So you first had to let go of your own anger, fear and shame. Was that a compulsory exercise, so to speak, so that you could talk to your daughters about it later?

Absolutely!

And what were your daughter's questions during the ten-hour car journey?

How I was doing and why I hadn't dared to tell her earlier. I was amazed that she didn't have more questions.

What has changed for you since you started telling your family?

Around the same time, I started working on various research projects at the university hospital on the topic of HIV and stigma. And the result of this research was that "social HIV" is now much more harmful than "medical HIV". This encouraged me to stay involved.

This change came with knowledge: 
I understood that I was not going to die 
and that I have a normal life expectancy.

It seems to me that you have experienced a kind of rebirth!

Exactly! I've been living again since I started talking openly about my HIV.

When I met my husband, I had already had a diagnosis for a long time. It was part of our relationship right from the start. It was different with you.

When I was diagnosed, my partner was very scared. Part of his reaction was guilt, but his test was negative. He also initially thought it was better not to tell anyone. He was afraid that people would judge me, especially at my workplace. But after a short time, he assured me of his support - regardless of whether I wanted to tell people about my diagnosis or not.

The workplace is one of the places where people hardly ever talk about HIV. You yourself are very open about your diagnosis at work.

I spoke publicly about my life with HIV for the first time at an event for International Women's Day. Before that, I went to my boss - because I wanted him to hear it from me first. The encouragement he gave me was simply incredible.

So you were not only supported on a personal level, but also on an institutional level. Now you are part of the mentoring project at Lausanne University Hospital.

Exactly, because this stigma, the feeling of having done something wrong and having a secret, is something that we HIV sufferers all experience. And I thought that I would like to support others in this. I've met all sorts of people in the process. The biggest surprise for me: people who have been living with HIV for thirty years and have never spoken to anyone about it! They are constantly suffering under the burden of keeping this secret to themselves. These people motivate me even more to get involved.

On 8 March this year, on the occasion of International Women's Rights Day, you came out publicly. You also gave an interview to Swiss television on the same day. Your whole family and friends were there. What was that moment like for you?

There were a lot of emotions. But it was also liberating to speak in a very favourable environment. People were there to understand, they wanted to learn. I found it very impressive. And I think it's important to be part of this movement and to go public. We make life with HIV visible in a different way. So that it's not just doctors who deal with it.