From self-censorship to becoming a voice: lifting the veil on my HIV status
This article is translated from French, original article published in Zèbre Magazine by Anne Gillet.
REFRAIN FROM EXPRESSING YOURSELF IN ORDER TO AVOID BEING JUDGED, SCORNED, REJECTED OR DISCRIMINATED AGAINST. ISOLATE YOURSELF TO PROTECT YOURSELF.
SELF-CENSORSHIP IS FIERCE AND MERCILESS. BUT TODAY, LOUISE HAS DECIDED TO FREE HERSELF FROM IT. IT IS A SLOW PROCESS THAT SHE IS UNVEILING FOR THE FIRST TIME: FREEING HERSELF FROM SHAME AND GUILT. SPEAKING OUT AT LAST TO (RE)BECOME FREE AND BUILD A BETTER WORLD.
Louise Soubrier is a sparkling 34-year-old French-Swedish woman. She was born in France, where she grew up until the age of 19 with a strong desire to leave the country. No doubt because of her two nationalities and because she had already travelled a lot and enjoyed other landscapes. One day, eleven years ago, she learned that she was HIV positive. Coming to terms with an unlikely reality has been a long road, but one that is finally beginning to open up today, because for the very first time, Louise has decided to lift the veil and to speak out.
Anne Gillet - Why did you choose to study in England?
Louise Soubrier - Neither the French mentality nor the French pedagogy really suited me. I first went to India to do a four-month journalism training course, as I really wanted to become a war journalist! Unfortunately I got really ill and had to go home for treatment, which led me to start my studies in London. Firstly in International Politics and then I did a Masters in Global Energy, Climate Policy and African Economic Development. The English system suited me much better creating a greater sense independence, self-discipline, and with a larger scope for individual reflection.
It was when you were living in London that you found out you were HIV positive... How did you find out?
“When I saw the look on the nurse’s face after the rapid test, I knew straight away”
It was 11 years and a few months ago, when I was 22, and it happened completely out of the blue. I was in a relationship with an Englishman I had met while studying in London.
One day in April, I went to a family planning clinic to change my contraceptive pill. I had filled in a form saying that I had had a South African boyfriend - at the time, the HIV rate there was around 17% - and in that case I had to have a full check-up. I wasn't afraid at all, I was convinced that I wasn't affected. However, when I saw the look on the nurse's face after the rapid test, I knew straight away. A few minutes later, she confirmed that the test was positive. I thought my life was over, that I was going to die within five years. I knew next to nothing about the subject.
I had heard the stereotypes, that it only affects African and homosexual communities, and that many people had been infected with HIV in the 80s, even in Europe. But what I did not know was that there was a treatment, or at least a way of living with it, and that anyone could be a victim.
Fortunately, I immediately had the support of the friend I was living with, my family, my twin sister Pauline. My mother even flew in the very next day to be with me, and support me psychologically with all the tests awaiting me at the hospital.
Facing this news, I was traumatised and shocked, but I immediately called my ex-boyfriends to tell them what I had learnt about my health and to make sure that the virus was not passed on to anyone else. When I did, I was met with very harsh and aggressive reactions, even though I was simply trying to behave responsibly. I quickly became aware of the discrimination this virus causes.
In fact, it was your partner at the time who gave you the virus. He knew he was positive, but didn't tell you...
Yes, we had been together for two years and he was positive and, over time, became very contagious. He had let the virus develop to such an extent that he was close to having AIDS, which is irreversible. I began to understand why he was taking around thirty food supplements a day, and seeing all these alternative doctors. When my test revealed that he was HIV-positive, he started treatment straight away. As for me, I couldn't start mine immediately: I wasn't sick enough, my CD4 count - the affected part of the immune system - wasn't low enough yet. The doctors told me I had to wait about two years before I could start, that was their policy or I could go to the USA. But in July, everything changed, my immune system plummeted and I became very ill. I would spike fevers and faint: the virus was developing inside me. I had to start the medication earlier than planned and the side effects were very unpleasant. It was more tiring for me to sleep than to stay awake, I had very lucid and disturbing dreams and I slept with my eyes open. I also had skin reactions; I was allergic to one of the ingredients in the first drug. While I was going through this very difficult period, my boyfriend, who was older than me, continued to behave very irresponsibly. I had to look after him, accompanying him to all his medical appointments and go alone when it was my turn. He had also forbidden me to say the word HIV; at home and in public we had to use another word - VF – he had invented, to talk about it. He was censoring himself and, by extension me as well.
I didn't learn the truth until much later, when I finally had the strength to leave him. He admitted to me that he had too often behaved in ways that were dangerous and unconscious to himself and others. He had never bothered to contact anyone he had put at risk. He answer was: “why should I tell anyone when no one told me”. I call his behaviour criminal.
What has been the consequence of this new reality, now that you are living with HIV?
“Once you start treatment and your viral load becomes undetectable, there’s no longer any risk of contagion.”
On the one hand, I was forced to stay with the person I was with because I firmly believed that, being HIV-positive, I was never going to be accepted by anyone else.
This attitude of mine was incomprehensible to the people around me who knew and loved me. But I was terrified of having to face someone and say: ‘I'm HIV positive’, and to live alone with the disease. I promised myself I would be transparent and share with anyone new in my life- even though once you start treatment and your viral load becomes undetectable, there's no longer any risk of contagion. At that point I began to be very afraid of this disease, for what it meant socially. The three years following my diagnosis were hell; I felt alone and misunderstood. I still managed to do well in my studies, but I honestly don't know how I managed.
Then one day you decided to go to Africa, which was to help you break free from this situation of being trapped and dependent...
“At that point I began to be very afraid of this disease, for what it meant socially.”
Yes, at the end of my Masters, I went to Africa to write my dissertation and I found a company that hired me, which enabled me to move to Kenya. I had never set foot in this magnificent country before. Although I had worked hard to develop my career in the energy access sector in Africa, this move was clearly an escape. I wanted to break away from this person who had contaminated me and caused me so much suffering. It was July 2015, I fell in love with Kenya, and after two weeks, I decided to stay.
It was very strange, when I landed there, I had the feeling of finally being aligned with the place I was in, I was vibrating at the same rhythm as Kenya, something I had never felt before, even though I had already travelled a lot on this continent.
I worked mainly in the energy sector and created a company in the production of food supplement. During my spare time I joined humanitarian groups and open-hearted people, who inspired me to develop projects in one of Nairobi's biggest slums.
Two years ago, I set up an association called Maisha Marefu, which means ‘Long Life’ in Swahili, to develop projects that improve living conditions in orphanages and help vulnerable communities to become self-sufficient and climate resilient. We have just set up two small chicken farms and a water pump so that the children can shower, drink and cook. We have also set up dormitories for the children to sleep in decent conditions, while ensuring that we provide food. I have also set up programmes to combat the stigma attached to HIV, a subject that is of course very close to my heart.
Have you suffered discrimination just by saying ‘I am HIV positive’?
Yes, absolutely. I think the main reason for discrimination is that the virus is sexually transmitted and it is therefore taboo. There is also the fact that the disease is more prevalent among discriminated communities. Whether in Africa or in Europe, I have heard a lot of contemptuous comments such as ‘it's dirty, they’re monkeys’, and some very misplaced jokes. When I shared my HIV status, I also experienced some very difficult moments of rejection.
I also feel a great lack of understanding, which comes from the fact that this disease is generally associated with a certain category of the population. Anyone can fall victim to it - and I feel very well placed to say so - and it remains unfair to anyone who falls ill. What I can feel is above all a sense of shame and guilt. I feel like I'm going to be judged. Immediately, someone is going to think: ‘she's dirty’.
For five years I was told that I couldn't have children, which was very hard to hear and accept. So I tried to live with older people who already had children, because I thought they'd understand me better and I wouldn't be under pressure to have a child myself. Something I probably would have done with a partner my own age. I have managed my life a lot by adapting to the disease, to what people think and to the side effects of the medication. As far as I am concerned, it may seem surprising to you, but I am still in denial about the disease and I refuse to accept it. My awarness of this denial is however a progress, although I have refused to work on it psychologically for 10 years.
How are things going at work for you?
I find it very difficult to have a ‘normal’ job. With this illness, I often have had spikes in fever and fatigue. I have recently changed my medication for the second time, as I was still having very complicated dreams and nightmares. The drug also affected my mood: feeling depressed for no reason at all. There are days when I need to rest and sleep, and there are days when I cannot concentrate. So are these side effects of the drug? Are they psychological effects of the illness? Or both? I don't know, but I suffer from it.
Until now, I have rarely dared to tell the truth to the people I work with. If they ask me: ‘Why are you ill so often? What's the matter with you?’ It seems totally hypocritical of me not to say that I have HIV, knowing that through my association I want to fight against stigmatisation and yet for years I haven't dared to put this point forward, even though it would be a real commitment and a relief for me.
You have to realise that stigma is one of the main reasons for new cases of HIV, and I am a victim of that myself. The fear of being judged and rejected socially makes it however very difficult to bring up in a work environment.
When people ask me: ‘You're 34, you haven't had any children yet? Don't you want any?’ I could quite naturally answer: ‘No, because I have HIV and it's not as simple as it is for most of you, because I have to be rigorously monitored’. And yet I alwayss answer: ‘No, I'm focusing on my career’. But that's not the whole truth. Not being able to talk about it openly is hard. Because it's like having to hide who I am and lie about it.
Do you think that if you spoke openly about it, it would create difficulties in your profession, in your circle of friends? Or is it difficult to express?
It's difficult to voice it and I fear rejection, so sometimes it's easier not to say anything. And at the same time, to be honest, the people who would reject me for it today aren't the ones I'm interested in surrounding myself by.
There is also a growing debate around this question: not being a threat to anyone do I actually have to disclose my status. The reason why I want to do it, it to raise awarness and decrase the psychological weight we have to carry.
I have made progress and moved forward in terms of acceptance, and I amm very lucky in that I've been living with someone for three years, who obviously knows about it and accepts and loves me as I am. He was very scared at first, of course, even though he didn't talk to me about it. It created conflicts in our relationship. He read a lot about it. Today, he keeps me informed about the medication and the tests being carried out. He is very present when I have to go to hospital to meet the doctors, to understand and support me. Sometimes I wonder whether he is ashamed of my illness or whether he is saying the opposite to reassure me. I also fear he too is becoming a bit of a victim of the stigma I bring to the couple.
At the same time, he's proof that HIV can be controlled to the point where it's no longer transmissible. So, in a way, it puts some order into the thoughts of anyone who might have a critical opinion about this.
Yes, I completely agree, but unfortunately this information is very rarely shared with the general public. On the one hand, it's possible to live an almost normal life on treatment when you're HIV-positive, and on the other hand, when the virus is undetectable you're no longer contagious.
However, stigmatisation remains one of the major vectors of new cases. I'm going to tell you something that will surprise you. When I go to hospital for my consultations, I'm afraid of people who have HIV. I can't understand that I've got it too! These people scare me and I have no sense of belonging. I'm steeped in stigma myself: I think these people are dirty. It's very strange, but I think I can explain it by the fact that the clichés surrounding the disease link it to people and practices with which I don't identify with, whereas the virus can affect anyone. Quite simply, I also feel disgusted by the virus in my body, and during these check-ups every six months, these ‘sick’ people remind me of it much more than I'd like them to.
It's not easy, that's for sure. These are clearly fears, and we can understand them. And how do you combat these fears?
I believe that these fears can be overcome through talking and through more transparent and factual communication. It's a slow process, but entirely achievable.
That's what I want to do through the organisation I have set up, to get rid of this fear. Many of the children and people we help have HIV. They have been infected in different ways. Their stories are much worse than mine. And that, too, makes me realise just how lucky I've been. Because the level of stigmatisation and family rejection in Kenya and other countries is much higher than in Europe.
While the virus is more prevalent there, the discrimination is even worse?
Yes, it's incredible. I know a young man of 16 who had the misfortune to fall ill because he had a blood transfusion when he was born. That blood was infected. Now his family are telling him he's useless because he's going to die anyway, so he's lost a huge amount of self-confidence and doesn't want to live any more. Another young girl attempted suicide because she could no longer stand the stigma around her. There are women who get beaten up if they tell their husbands that they are positive, when of course they have contracted it from their husbands. There's a fear of taking the medication so that your partner doesn't see that you're ill. Women continue to breastfeed even if they are ill, even though there is a risk of transmission, because otherwise they run the risk of revealing their positive status. But I know that you can live an almost normal life, and that's what motivates me to take action.
What are your current projects?
I have several things in mind. Firstly, I want to work on my own denial about the disease and get rid of all the stigma I have created or at least maintained. It's not normal for me to be afraid of someone who has HIV when I'm HIV-positive myself. For me, working on this aspect of my life would be a of great psychological release, because it affects me so much.
Then I want to continue to act through my organisation and help people like me to find the strength to speak out and start a life full of joy and personal ambition. The name of my association is my guide: Maisha Marefu. As I said, it means ‘long life’, because that's my dearest wish: to create a long and serene life around HIV.
There are few voices around the stigma, few people talking about it. And after remaining silent for far too long, I want to become that voice that carries so loudly, that it manages to break down that stigma... And I am starting today.
