This Is An Open Letter From An HIV-Positive 22-Year-Old
"Here’s how I learned at age 20 that I was HIV positive."
Your 20s is a time for staying out late, waking up early, working hard but living carefree. Lucie's life isn't like that. Not anymore, at least.
Today, Lucie is just 22 years old. Back in 2012, while running routine blood tests for an operation, Lucie found out she was HIV-positive. And then everything changed.
On June 28th, 2012, I sat on the seat that faced the gynaecologist in his office and he told me that my results from blood tests, found by an anaesthetist during an operation, came back positive for HIV. At the time, I immediately thought "my life will change," then I asked myself "why me?". I remember looking at the picture hanging on the wall to the right, I think there was a car in it. I don't remember because a tear blurred my vision.
I remember that tear was the only one. A tear of shock, alone down my cheek. The doctor told me he was going to make an appointment with the Department of Infectious Diseases of the University Hospital and I had to redo a blood test in the afternoon to get more information about my condition . He asked me if I had any questions. I asked him if I was OK and where the virus was. I was told I was well and that I should not worry. I would be given the date of the next appointment later in the afternoon.
Here's how I learned at age 20 that I was HIV positive.
“After all, the guy was clean”
On the first visit to the hospital, I was asked tons of questions to try to determine the origin of my contamination. "Have you been to Africa lately?", "Did you go to the United Kingdom between such and such a date?", "Have you ever practiced anal sex?", "Have you ever used drugs by injection?" etc. I had had unprotected sex a few months before the report and I had an idea of what the origin of my contamination might be, even though I did not really understand.
After all, this guy was clean, he had not been with a lot of partners. The second suspect, I had given him a blowjob but surely that can't be enough, though?" The virus is present in pre-seminal liquid" the nurse tells me. Ah. I was informed on the subject, and the basics, but like everyone else, I hadn't known that.
Before starting HAART (highly active antiretroviral therapy), it was all a bit abstract. I felt good, I was healthy, admittedly a bit depressed (but this is my normal state) and not sick. However, a few weeks after the announcement, I experienced an anxiety attack for the first time in my life. I remember it perfectly, I started to suffocate in a Monoprix shopping centre. I had a stomach ache. I got hot. I wanted out. On the way back to my apartment I felt that I was going to faint, but I wanted to head home as fast as possible.
Just a second after closing the door of my apartment behind me, I collapsed in tears, sobs choked me, filled with the urge to vomit. It lasted a few long minutes. I had never experienced that. During the summer of 2012 I had several. Sometimes, I had the absurd impression that an insect, or a small alien, was walking through my veins, I wanted to rip my skin off. An indescribable feeling.
Three pills to be taken every 24 hours
It is mid-August 2012 when I start the treatment. Three pills to be taken every 24 hours. It became very real once I started. I am HIV positive. I will take a combination of therapies. Every day. For the rest of my life.
I have not had a lot of side effects. In the corner of my eye, sleep is yellow. "The whites of your eyes may turn yellow a bit but it's temporary." Two and half years later nothing has changed. Several people thought I had something wrong with my liver. We wonder sometimes why my eyes are like that. I think it is a side effect of a medication that I take. No one ever asked me for my opinion though. Most times it is not noticed, it depends on the day, and the distance.
It's been a few months and the doctor who is treating me wants to change my course of medication, because of the side effects, but also because he is afraid of the potential impact on the long-term Truvada on my back. From my last exams, all my organs are working perfectly but Truvada is quite aggressive. Because of my young age, my doctor would rather change the drug and offer me a new prescription. It takes time because my virus has already mutated, it is resistant to a certain molecule that prevents me from taking certain antiretrovirals.
This is one of the first things he told me: there is no single strain of HIV. Without going into details, the virus may develop resistance to antiretroviral drugs and mutate. Contrary to what I thought, somewhat naively perhaps, I can't have sex with another HIV-positive person unprotected because I would take the risk of being infected by the virus again, which may well have mutations other than mine. This undoubtedly complicates my treatment options.
I kept an alarm on my phone for about five or six months. At 19:30, I would have to take my medicine. This is not so different from girls who take the pill. At first I often wanted to throw my phone out the window when it began to ring. After a while I could work out that it was going to ring a minute or two in advance and I would remove the alarm. I forgot to take one once.
Soon after the announcement, even before starting the course, I'd told my closest friends. My mother was informed a few days later. She'd come to fetch me by car at the train station. I told her as we passed a roundabout; before the bridge. She asked me if I was okay. How I had caught it. What would happen. I explained. When we arrived home I think we stopped talking about it. It was a neutral reaction, without judgment or fear-mongering, I understood later. Over the Christmas holidays. I told two of my sisters. It was in the room with my grandmother late one evening.
My mother was in the room. I took out my three boxes of medicines. "What is it?" asked my older sister. I hesitated a little. "It's a triple therapy. For HIV". I looked at my mother. She left the room and closed the door. "What?". I said to them, they both cried, too suddenly, they told me I was too stupid, I should have listened, I knew there were risks. I said, "I know."
My mother came back in and said it was one of the hazards of life. There are young people who die on the road while returning DVDs, or who are left disabled for life, others who have cancer, others who commit suicide, there are lots of children who are affected by diseases and never see their 20 years. There are all kinds of things that can fall on your face at any moment, anywhere in life. "Shit happens," as they say. I was HIV positive at age 20 and I could do something about it.
My father didn't know, neither did my eldest sister. I don't know when or how I gathered the courage to tell them. My father found himself by nosing through a pillbox one day he found lying in my room. We see the pills through the plastic. I don't know if he didn't see because he wasn't paying attention, or didn't want to know what it was but he didn't ask me anything.
A new sex report
The announcement hit me hardest in November of 2012. It had been a few weeks since I had seen a boy. I was single for a long time and it was perfect for me but I liked… I liked it, I felt good when I was with him. We watched a movie at home one evening and at the end we started kissing.
"Wait. I've got something to tell you. Before we go any further." But it wouldn't come out. Instead, it lasted a few minutes I think.
"But tell me."
I burst into tears, he just hugged me. I think I cried a good five minutes before we started talking about it, then I explained my situation. He asked me to give him a few days to think about it.
Raw anguish. It turns out that by now I am always with this same boy, but sometimes I think I would be better off celibate, how does it go with the guys?
As a couple, especially at first, the virus was like a third partner. We spoke freely, which of course was a big plus for me as well as for him. That didn't stop him from not sleeping for days, afraid to take the test, he had not wanted me for days because of a ras-le-bol, almost disgust, the hood. The hood … We must see it as a teaser. You know when someone pulls out a condom something rather nice will happen.
“I’m not complaining”
In the medical field, I have also been fortunate to have been no rejection or judgment. What I'm going to say might sound naive, I know this is a superficial analysis based solely on my subjective experience. I always had the impression that the people would feel pity and see me as a victim, a poor girl who has not had any luck, and I think it's because I'm a girl, white, in her twenties. It's very ironic but I sometimes wish people would imagine that it was my fault.
“I took the risk of exposing myself to HIV and other STIs”
I have not had any luck. I did not have bad luck. I had unprotected sex with boys who said they were clean and I believed them at their word. I took the risk of exposing myself to HIV and others to STIs. What is ironic is that I also never let anyone tell me that it was my fault. My sisters, my mother and I are allowed to say "it's your fault." No one has the authority or right to judge me. Either as a victim or as the responsible party. I am HIV positive. Period.
I had a rather unpleasant experience at the pharmacy. It was not my usual pharmacist but a young woman, not much older than me, on an internship. I gave the order. "All right, you OK? – Yes, okay, so the treatment works okay. – "Because it is not easy, eh? Especially when you're young I think we not realise…" She had the tone of someone who works with children, honeyed compassion, dripping. I remember that upon leaving the pharmacy I'd called my boyfriend to bitch about this intrusion into my private life. "But it left a good feeling." I know that. This compassionate reaction bothers me because, I think, I'm not complaining.
The ignorance surrounding the virus
Since then, my opinion has changed on everything related to HIV / AIDS. I am currently very aware of what is happening in this area of medicine. I noticed for example that many young people (roughly between 12 and 30 years) know very little or even completely ignore the difference between HIV status, HIV and AIDS. Little reminder so without going into scientific details. HIV, human immunodeficiency virus, attacks the immune system "colonizing" lymphocytes. A person carrying the virus is HIV-positive.
When the virus was too attacked the immune defenses of a human being, talking about AIDS, acquired immunodeficiency syndrome. The body can not defend itself against attacks from germs, bacteria and other viruses and so called "opportunistic" diseases can quietly install their offices until death. Antiretrovirals muzzle the virus, they prevent it from destroying the entire immune system. When a person arrives at the AIDS stage, there are also treatments to help the body defend itself. The Institut Pasteur explains better than me.
I am HIV positive, but I do not have, and never have had AIDS. My therapy prevents the virus from doing what it is supposed to do, but it can't return my body.
When ignorance becomes carefree
Through social networks and those around me, I tried to do prevention at my humble level, and I am desperate to see that it doesn't affect anyone else I know. I was like "if my friends are experiencing my life maybe they will be more careful." The day after a party, a friend told me she has with a guy. I asked him if they are protected. "No, we did not have a condom." A close gay friend of mine is still having regular unprotected sex, he has known me from the beginning.
One day we were discussing it in the street he said he'll need go for the test soon because he's taken risks. "Well, anyway if I catch it, it's okay, you seem well. – Uh, yes, finally avoided anyway, it's not joy all the time and it would surely be more complicated for you". I know he said that with a touch of humour, but it hurt my stomach to hear that. Does the fact that I live with my virus increase my desire to protect those who don't? It's a depressing prospect.
“After the announcement, I did not want to trust anyone. I decided to be wary of everyone. All the time”
This is an illustration of the knowledge shown by the new generation. A knowledge that I lived and that I must face the consequences. I was also one of the people who thought it will never happen to them. After all, I'm French, heterosexual, I am 20 years old, AIDS, it doesn't concern me. It doesn't exist in 20 year old girls with HIV.
If a guy tells me he's clean, he had only two or three partners, why should I be wary? After the announcement, I did not want to trust anyone. I decided to be wary of everyone. All the time. That's why we ask you to do this test regularly and know your status. Because when you say "I am clean" as your last test a few years ago and have had other partners, you may be lying. Without knowing. But you're lying.
And the virus in your veins laughs because he knows that you are not clean. Getting tested is scary, you're afraid of the result and that's normal. But isn't it even more scary to tell you that you will potentially contaminate someone because you're not sure that you're HIV negative? With each new sexual partner, the condom is necessary. As stated in an excellent Aids campaign is saw previously, "no condom, no sex." And that's how it should stay, until you and your / your partner (s) have done a test.
The selfishness of risk taking
I feel guilty sometimes. With myself at first, for having preferred the pleasure of a moment over my long-term health, but also to the thousands of activists who have fought the last 30 years and all the activists who are still fighting so that AIDS epidemic can stabilise, then end. When I saw the superb documentary How to Survive a Plague by David France (2012), I felt bad.
The Act-Up activists in the US have spent all their energy, rare energy, so that people with HIV have access to treatment, so that there is less discrimination, for the generations that will come after unfamiliar with this virus.
My carelessness, my lack of caution, and finally my contamination are an insult to their struggle, lack of posthumous respect. I would like to apologise for past and present activists because by not fighting the epidemic at my level, I flout years of struggle and suffering. As if all they had done and are still was useless.
I feel guilty and also indebted to the French State, because my medical care and my drugs are fully reimbursed by social security. I never had to worry about that. I sometimes say that France literally saved my life, I'm barely exaggerating. My therapy costs more than 1000 euros per month. The state pays for an error of judgment in my youth in a way. Through prevention campaigns government health services are trying to make sure we do not get there.
When I took the risk of exposing myself to HIV, it was as if I had said a big "fuck" to thousands of activists in all HIV-positive in the world, living and dead, and in my country trying somehow to sensitise youth to the epidemic. It's very selfish. It's disgusting.
I could write about it for another pages and pages but the key is said. Hoping that my experience, I would have had to share a long time, serve a purpose. This is an experience of HIV among millions on the planet, personal and subjective.
I am sure that many HIV-positive people have things to say about what I've written. We do not all live in the same way. For a long time I wanted to speak openly on Twitter for example, but I was afraid. I wasn't practising self-inflicting discrimination whilst thinking that being positive was neither shameful nor serious. It was silly.
I don't know what's made me decide to do this. I think that there is an urgent need for young people of my age to take a slap in face and wake up. This post is my slap.
Learn more about the prevention and detection of AIDS and HIV at Planned Parenthood.
Cover image via We Heart It.
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