Don't be ashamed!

Marlon: Sandrine, I saw you at an HIV conference in Bern last October as a fighter and activist. Has that always been the case?

Sandrine: No, not at all. When I was younger, I was shy and because I was the ‘ugly duckling’ in my family, I had no self-confidence.

When and why did that change?

After 24 years of marriage. I took stock of my life and came to the conclusion that I couldn't go on like this. I had a ten-year-old daughter, for whom I was prepared to move mountains, and I had to do her justice despite the illness. But I also had a husband for whom I didn't exist as a person,
but only as a housewife and for whom I felt disrespected. One day the tears came and I couldn't stop crying. Something had to change. I started psychotherapy and learnt to love myself as I am and to stand up for my needs. I separated from a man. Today I have had a fulfilling love life for over ten years with a person who makes me happy and content, who supports me in my endeavours and who respects me for who I am.

You are now 56 years old and have been living with HIV since 1986. You got married shortly after your diagnosis.

Exactly. I got married very young because I had fallen in love with the man who would later become my husband and these feelings were reciprocated. Anyone who was living with HIV at the time and was convinced they were going to die didn't hesitate for a minute to commit to their loved one.

What was your life like before your marriage?

Before my marriage, I had a relationship with a very nice person who unfortunately had a drug problem and was living with HIV without knowing it. We only had sex once and shortly after that I was living with HIV. I didn't know how long I would live because there were no treatment options. Shortly after my diagnosis, I moved to Zurich with my boyfriend. I wanted to learn German, but it was also a kind of escape. I liked him a lot and wanted to help him get off drugs. I tried for a year and a half, but I didn't succeed, so I left him. I couldn't go on seeing how he was destroying himself with drugs. Then I returned to Delémont.

What was your return to Delémont like?

I got my life back on track and someone fell in love with me, even though I had HIV. That was extraordinary. And especially at that time. It was 1988, it was amazing! I felt like I was a good person and accepted, especially because that wasn't the case in my family.

How did you deal with your diagnosis?

Everything fell apart at first. I was in a state of shock. But I was young, didn't feel ill and had gone through a phase in which I had denied myself a little. I also had an optimistic temperament, was full of life and that played a big part. Nothing was known about the disease anyway, there was no treatment, everything was unclear, so life went on. My biggest worry, however, was that I might pass on the disease. Shortly afterwards, people in Europe were talking more and more about HIV. There was a lot of discrimination at that time, which was the worst thing for me. For example, I was accused of having fallen in love with a drug addict. I was often hospitalised alone in a room or with very old people. I was always last in line for operations and when I gave birth, I experienced rejection. But my zest for life and acceptance of my situation were crucial in helping me get through it all. In the end, I accepted myself as I was. I was lucky enough to have a doctor who supported the concerns of people with HIV, which was not common at the time. That helped me a lot. On the other hand, my dentist and the nurses who did the blood tests accepted and respected me.

You are currently doing peer-to-peer counselling for people with HIV. What is that like?

Peer-to-peer counselling is very important. When you put a smile on the face of someone who is sad and isolated, there is something magical about it. I've been given a lot, whether it's health or love. I've received a lot and it's normal for me to give something back. Somehow I've been lucky, but I've also forced my luck.

You also raise awareness about HIV in schools. What is the most important message you give the pupils?

When I go into schools, I don't know exactly who I'm dealing with. I can share my experience by saying that it's really crucial to be careful. My message is that at the beginning of a romantic relationship it is very important to get tested for sexually transmitted infections. In an exclusive relationship, you can then go without the condom after a second test after six weeks (in the event of a negative test result) without running the risk of HIV infection.

What are the particular challenges for a woman with HIV?

What discriminated me the most in this respect was that a woman is isolated. Women and children are always forgotten when it comes to HIV. They are never included when it comes to new treatments. Instead, they have to take the treatments, which are often too high doses because they were developed for men and not for women. With hormones that don't work like they do for men.

What was it like when HIV first emerged?

In the beginning, everyone only thought of the four Hs: haemophiliacs, Haitians (editor's note: outdated and discriminatory term for people of colour), heroin addicts and homosexuals. But we hadn't thought about heterosexuals. We had forgotten the fifth H, which was important. A woman living with HIV is more ashamed than a man. Women were forgotten, and in the case of heterosexuals, it is often the women who are infected. A man can transmit the infection to a woman more easily than a woman can transmit it to her partner. I know that the risk is highest among men who have sex with men, but we must not forget about women. Unlike the gay movements, which have been quick to organise in the face of the pandemic, women have been isolated, silent and left alone with their HIV infection.

Don't be ashamed!

What advice would you give to someone who has only recently started living with HIV?

You can live with HIV, you can have a family with HIV, you can have sex with HIV, and you can keep your job with HIV. You have to be very conscientious about taking your medication. Nowadays there are treatments that are effective. I wasn't so lucky because the treatments before 1996 changed my body a lot, I have after-effects and it's sometimes hard to bear, but I have to live with it. You have to be looked after by a medical professional. It's important to go to someone who is also living with HIV and who can give you advice. You shouldn't remain isolated. It has helped me a lot that I have never been ashamed of my HIV status and I would like to convey this to others: Don't be ashamed!