“They told me I only had 2 years left to live”: infected with HIV in 1984, Pascale is the happy grandmother of a little boy

I was infected in 1984, when I was 23, by my boyfriend at the time, who didn’t know he was HIV positive. I only found out about this ten years later. I have lived without knowing it all these years with the virus inside me. In 1994 I fell ill, a little bronchitis. But as the virus had destroyed my immune defences, the antibiotics weren’t working, I was getting worse and worse. Seeing that I was not recovering, my doctor suggested that I take a screening test. It was there that I learned I was HIV positive.

Era explosion. We have to put ourselves in the context of the time: In 1984, people were still dying of AIDS. The doctor told me that I was HIV positive I only had two years to live. It was very brutal. I immediately thought of my daughter, who was then 6 years old. My first thought was that she should have grown up without me by her side. I also immediately wondered if you could be contaminated. The doctor asked me if she was in good health. She was her, so she told me not to worry, by now she would be dead or very sick if she had the virus.

But my doctor preferred to give him a blood test. The result came back positive and the doctor told me, very tactfully, that she would not arrive as a teenager. He was extremely violent, I never got over it. He completely traumatized me. It’s like we both signed our own death warrant.

“Mom, we’re going to die”

From there we had both heavy following. I immediately wondered how I could tell my daughter about it. But she was only six and a half years old at the time. The doctor advised me to wait before telling her that he would still be asking me questions.

So I waited. It took her ten years to ask questions, when she was in high school. One day, her establishment calls me to inform me that she is in tears, that they don’t know what happened to her, that I have to come and pick her up urgently. It was then that I understood. All these years, she must have known that we both had something serious, but she couldn’t say the exact word. She never asked me questions, probably not to scare me.

It was there, after picking her up from high school, that I told my daughter that she, like me, was HIV positive. It was terrible. She started crying, she said to me: “Mom, we are going to die. » Then he had a severe depression, he stopped school for a year. She benefited from a psychological follow-up and recovered little by little. She went back to school, she passed her high school diploma… But it was very complicated.

All these years, I have waited for her to ask me questions. I too lived this wait with the anguish of telling him, of wondering what his reaction would be. Somehow, it was also a relief for me to finally be able to tell him the truth. He had to go out.

In 2023 it is still very difficult to announce your illness

We have always been very close to my daughter and this ordeal has further strengthened our relationship.. The round trips to the hospital, the treatments brought us very close… But also the secrecy that surrounded our illness. We shouldn’t tell anyone about it – except our relatives – let alone at work and at school. In the 1990s, the feeling of rejection of HIV-positive people was still very strong. People wondered how we got infected. Were we on drugs? prostitutes? Luckily, my entourage were fantastic at the announcement of our illness and were very supportiveS. I know, unfortunately, that this is not the case for all HIV positive people.

We are today in 2023 and it is still very difficult to announce one’s illness, one risks rejection, discrimination. This stigma forces many people to live with their condition in silence, which is very painful.

“I had to live with the guilt of having given him this virus”

Living with HIV also means having to deal with very heavy treatments. When I learned that we had been infected, my daughter and I, only AZT existedto be taken every 4 hours. We had to find a way to the mistress takes care of my daughter without ever arousing suspicion By anyone. So I transferred the pills to an old bottle and feigned an allergy problem to justify taking the medicine every 4 hours. I think that’today this subterfuge would no longer be possible.

Then, in 1996 tritherapies arrived. Then we had 25 drugs a day to swallow. In addition to the triple therapy, we had to follow an antibiotic treatment because we had a very high risk of tuberculosis. To make him swallow all this, I made a little train: the drugs one after the other, like wagons. I was lucky that he accepted it without any problem.

We often went to the hospital was a bit like our second home. My daughter knew all the pediatric nurses, she tidied up the playroom… It wasn’t traumatic at all for her. The nursing staff was also very attentive, they did everything to make things go well for her, despite the very heavy side effects of the drug. Despite being hospitalized very often, my daughter kept smiling. She was incredibly strong.

For me it was more complicated. I had to live with the guilt of passing this virus on to her, always bearing in mind that I was told she was not reaching her teenage years.. Every time she caught a slight cold, I was afraid that she would get very ill and risk dying. All these years I have lived with a sword of Damocles hanging over my head.

” One day I had given up on being a grandmother. »

The other problem to think about when you are HIV positive is that it disrupts your intimate life. Personally, I made the decision to announce it to my partners right away. I told myself it made it or it broke. Luckily, I’ve never had a negative reaction from that side. So of course you have to protect yourself. We have been fortunate, since 2008, to have an undetectable viral load and no longer transmit the virus when we take our treatment correctly and have good compliance. This is very important to us, it means that we are no longer “time bombs”. Because the fear of contaminating one’s partner was always present until that moment.

But that didn’t stop me from being very worried about my daughter. I was wondering if she could have a normal love and sex life. When she became a teenager, she had her first boyfriends, to whom she told about her HIV status. And then finally, she found her treasure of hers, who reassured her that she wasn’t afraid of her. They are still together and had a baby seven years ago.

This pregnancy was a miracle and my happiness. One day I had given up on being a grandmother. My grandson is proof that an HIV-positive mother can have a healthy HIV-negative child, as long as she takes care and the virus is undetectable in her body. When he was born she had to take a little antiretroviral treatment for a few weeks, then be followed up for two years. My daughter simply couldn’t breastfeed her, as a precaution – although today the discourse tends to change on this topic. Now she is in perfect health, just like her parents.

” Every year that passes is like a gift to me”

Today, I am the happiest of mothers, grandmothers. We are lucky enough to live within minutes of each other, we will leave next week for a beautiful trip to Egypt all together… My nephew is what keeps me going. When I’m not well, I think about him and hold on. I want to see him grow, accompany him in all phases of his life.

I just turned 62 and I am the happiest of women trying to age! Every year that passes is like a gift to meto me who was told I only had two years left to live.

However, I remain vigilant about my health.. I still spent ten years without knowing I was HIV positive, and therefore without treatment. During this time, my immune system deteriorated a lot and never fully recovered, despite the treatments I still follow today. This is my big concern. Every time I go to the hospital for my follow-up, I am concerned about my T4 lymphocyte levels. Luckily I’m in good health today. I spent the winter peacefully, I didn’t catch the flu.

We also need to remember that even though we live much better off with HIV today than we did in the 1990s, the virus is still in my life, I can’t forget it. So even though I’m much calmer, there’s always this little fear lurking inside of me. And then I worry about my daughter: I’m a mother, it’s normal. Although I see that she is fine, she is still very tired, the disease has an impact on her life as well.

“I want to tell HIV-positive young women that they will live a long time”

To the women and young women who, like me 30 years ago, will now discover that they are HIV positive, I would like to reassure them. Tell them they will live long, that they will only have one medicine to take a day, with minimal side effects. That they will be looked after very well, that they need not be afraid. Furthermore, by taking the treatment correctly, they will not be able to transmit the virus, which will allow them to have completely normal sexuality, without the use of condoms, and will be able to have children if they wish. I really want to reassure them.

But before they find themselves HIV positive, girls and young women need to be told to protect themselves too! Even a first sexual encounter can be riskythe condom is really essential, in all circumstances.

Also, you shouldn’t be afraid of get tested regularly, for yourself and for your partners. It’s free and anonymous. The sooner we are detected, the sooner we are diagnosed, and the sooner we have access to treatments that enable us to live longer. You don’t have to be an ostrich.