How does it feel after being infected with HIV?
"Feeling like it's all over" : Seven years positive - my life with HIV
“What if the result had been different? If I were HIV positive? Would I have dared to write this then? I'm afraid the answer is no - and I want a world in which I could say yes without fear. ”These lines end an article I wrote for the Tagesspiegel seven years ago. As a journalist, I wrote thousands of sentences. But few have haunted me like this.
I had written a very personal story: a man I fell in love with, a trip to Brazil, a broken condom, my partner's revelation that he was HIV positive and not taking any medication, the search for post-exposure -Prophylaxis, the morning after pill for viruses, so to speak. In the end I did a test and it was negative.
I wondered if I would have written about all of this had the virus been found in my blood as well.
And then a few months later on a sunny Berlin morning I am in the doctor's office, waiting for the result of the recommended six-month-after test and the doctor comes in and says: “I'm sorry, but I have bad news. The HIV test is positive. "
You can do that
As a child I used matches upstairs in my room while my mother was talking to a neighbor downstairs in front of the front door. I put a match with the fuse on the friction surface and then I flick it into the wastebasket.
Most of the time it goes out before it falls into the trash. Not once. The wastebasket goes up in flames. I run to the bathroom. Toothbrush tumbler. Water. Room. Bath, mug, water. The fire is out quickly. But the hot air tore up some burning scraps of paper and they scorched the carpeting where they landed.
And as I look at the burns and the partially melted trash and as I turn around to go down the stairs and confess to my mother what happened, I have this queasy feeling in my stomach that it is all over now.
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It feels something like that when I leave the practice and go down the stairs. Something happened and I can't undo it. My mind tells me that I have dealt with this eventuality extensively. That I know what that means. I call one of my best friends, talk to him, make plans, work. "Everything's fine," I think. "You can do that."
But you can't
It won't be the last time I overestimate myself. That I confuse knowledge and experience.
Because: you can't do that. Not always, anyway. That first evening I lie in bed and suddenly there is nothing more to do, nothing to distract me, nothing to hold back the fear and it just washes over me. Everything I know about the virus now turns against me. I know what's going on right now.
Millions of tiny virus particles swim in every microliter of my blood, invade my immune cells, copy themselves into the genome and produce millions, billions of copies of themselves. I will never get rid of them. For the first time in my life I experience something like panic. It's like having claustrophobia in my own body.
I'm kind of an infectious disease expert. I studied molecular biomedicine. As a journalist, I reported from Liberia about Ebola and from South Korea about MERS. I write about fungal infections and couple leeches, plague, smallpox and cholera, about the little-known HTL virus as well as about HIV.
In theory, I'm an infectious disease expert
But I am a beginner at living with HIV. I can process and assess all of this rationally. But emotionally, HIV is called AIDS. And AIDS means fear, exclusion, rejection. I don't know at the time, but I have a steep learning curve ahead of me. And somewhere in the back of the less frequently visited rooms of my mind, words that I have written myself will echo over and over again: “If I were HIV positive? Would I have dared to write this then? ”Like a task that my younger self set my older self.
One of the most absurd moments of my life comes in Innsbruck. It's June 2013 and I'm in town to accept the AIDS Foundation's media award. For my story back then, which ends with getting an HIV test back that is negative. I'm just positive now. My family and friends know that, nobody at the awards ceremony knows.
The tectonics of the two selves
I sit in the front row while a TV presenter gives the laudation for me. She is talking about someone else. Someone who has been lucky and is negative. I feel as if these two lives, the before and the after, scrape past each other like two huge continents. I'm shivering.
And one more thing: I'm running out of time. I should actually take my pills now. Like every day, always at the same time. But the award ceremony lasts longer and longer.
I immediately started taking medication after I was diagnosed with HIV. This was not officially recommended at the time, but the study situation shows quite clearly that it makes sense. Today it is standard. At first there are three different pills, now I only take one pill a day. The active ingredients inhibit the virus from multiplying, they are sand in the gears of the tiny devil's machines.
As a rule, it succeeds in pushing the virus back so far that it can no longer be detected in the blood using common test methods. AIDS cannot break out in the first place, life expectancy is almost normal.
I am celebrated - and tortured
But even if the number of viruses in my blood drops drastically as a result of the medication - the pathogens do not go away completely. Some are hidden in the body: in immune cells, in the bone marrow, possibly in the brain. Researchers call this the reservoir. In reality, it is sleeper cells that are only waiting for their chance. When I stop taking the medication, it becomes active and the infection comes back. The tablets are my shield.
The thought of not taking my pills on time, the thought that my protective shield will soon crumble, drives me crazy. And while Michel Kazatchkine, a famous HIV doctor, is giving a speech in the hall full of AIDS specialists, I get up to secretly swallow my HIV pills in the toilet in the congress hall.
My shoes squeak treacherously as I leave the room. I'm ashamed and I don't know what for: That I'm positive? That nobody here knows? That I am currently failing at the task that I set myself six months before without even realizing it?
The diagnoses of the others
My first date after the diagnosis: he's attractive, funny in the chat, works in the advertising industry. Just moved to Berlin from Paris. We'll meet for coffee near Alexanderplatz.
How he has liked Berlin so far, I ask him. It's pretty much the first question I ask him. And he says he likes the city, the clubs are great, the atmosphere is relaxed. Only one thing bothers him: "So many guys here are HIV-positive."
I don't know what to expect. A grace period for newly infected people? It feels like a test. If I don't say anything now, I think I'll lose all respect for myself. "Hmmmmm ..." so I say. And then: "Yes, by the way, I am also HIV-positive."
[More from the area of knowledge: wound healing works differently than previously thought]
“Don't get me wrong,” he says immediately. “I have no problem with you. I just think you should have sex with each other and not with us who are healthy. "
You and us. My friend Hadija would now call it “othering”. A verbal "Sorry, you have to stay outside" sign. So that's what it feels like, I guess. Learned something again.
It would be a good moment to get up and leave. But I stay seated, make friendly small talk and drink my coffee.
The T-cell envy
Logically speaking, I'm not a risk. If the virus in my blood is below the detection limit, I cannot infect a sex partner even if I have unprotected sexual intercourse. U = U is what the World Health Organization (WHO) calls it: Undetectable = Untransmissable. But sex and logic aren't the best bedfellows. There is no pill against the stigma. Not against that in the head of the other and not against that in your own.
Some things change. When I watch zombie films, I suddenly think: what would I actually do in the situation? Where can I get my medication when civilization ends? The undead out there suddenly seem less scary than those undead things inside me.
I go to the doctor every three months and have my blood values checked. Then the CD4 T cells in my blood are also counted, these are the immune cells that the HIV virus attacks. If this value falls below 200, one speaks of the immune deficiency AIDS. A healthy person usually has between 500 and 1500 of these cells per microliter of blood. My crabs are somewhere around 400.
I watch this number like others watch their weight or bank balance. When I get to know people who are HIV-positive and whose cell count has risen to 700, 800, 900 under therapy, I get jealous. When I go to medical congresses, lectures about HIV suddenly feel different, more personal. I am sitting between hundreds of researchers and doctors and suddenly I have the feeling that everyone can see my status.
Life, love, learning
And then, six months or so after my diagnosis, I wake up in the morning and I can't quite tell what it is, but something is wrong. I get up, go into the kitchen, ponder - and then I know: I forgot to take my pill that evening. It's the first time.
It should scare me again, but instead I'm grinning like a madman. I haven't thought about my status for a day. I buy a small pill holder in which I put the pill every morning from now on, in the evening before going to bed I check whether I have taken it. Having to do this feels like a win.
I live and I learn. And at some point I'll love again. My boyfriend and I are on our second date. I already know that this person is something special and I can't think of anything else than that I have to tell him now, that I now have to know if that doesn't work for him. That fluttering in your stomach. It's like standing on a ten-meter board and looking down. If I don't jump now, someone might be pushing me.
So I tell him my story, he is quiet for a moment and then says: “First of all: Wow, I think it's brave that you tell me that. And secondly, there are many things that can fail with us, but not because of that. ”A few years later, it really failed because of other things. But I won't forget these sentences for the rest of my life.
Preps, pros and cons
Something else is changing. The pre-exposure prophylaxis comes, in short: Prep. The same active ingredients that I take to keep the virus in check can now protect healthy people from infection. In 2016, they will also be approved for this in Germany. When I tell someone that I am HIV positive, I now hear more and more: “No problem. I'm on prep. "
Maybe it does exist after all, the pill against the stigma?
In the countries where the prep is being introduced, the number of infections among men who have sex with men is falling. At the same time, sex without a condom is becoming more common, and venereal diseases such as syphilis, gonorrhea, chlamydia are becoming more common. It's such a thing with humans and microbes.
I'm writing a short book on infectious diseases. I also write about HIV in it. How the virus spread from chimpanzees and gorillas to humans at least four times. How one of these viruses managed to break through the lines of defense of the human immune system, how it got from the depths of the jungle to Kinshasa (once Léopoldville), and how ignorance, colonization, a syphilis epidemic and a change in sexual behavior created the perfect breeding ground for prepared the microorganism.
A lot of coincidences were necessary for this virus of all places to spread all over the world, I write. 35 million currently carry the virus, I write. I am one of them. I think. But I do not write it. I am not ready for it.
And it doesn't belong there either.
Nobody would have to get infected, nobody would die of AIDS
When HIV was discovered in the 1980s, mankind had nothing against handing out condoms or preaching abstinence. It was the time of scientists. They dissected the genome of the virus, analyzed the weak points, developed and improved drugs.
Today people like me can take medication that will enable us to live long and prevent infecting others, and HIV negative people can take medication that will protect them. That should be enough. Research has given us the means to end this epidemic.
But the reality is different. Around 1.7 million people around the world are still infected with HIV every year. The fight against an epidemic is not just about microorganisms and drugs. But also about society, money and justice. It's about fighting stigma and creating the political will to give everyone in the world access to the drugs that I take every day as a matter of course. According to the WHO, 32 million people have died of AIDS.
38 million people are now living with the infection, around two thirds of them are in therapy. I am fortunate to live in a time when there are medicines and in a country where I can get them without any problems.
I'm writing a second book. About the color blue, about the beauty of nature, science, life. And to my surprise, I find that there is no getting around my status of being HIV positive.
On a rainy day in London, I take refuge in the Tate Modern. I am strolling through the modern art gallery and suddenly find myself in front of a video installation that is just plain blue. It's Yves Klein's blue, filmed by filmmaker Derek Jarman. Jarman was HIV positive and the infection had damaged his retina. In the end he could only see blue.
And so he turned blue for 76 minutes, while actress Tilda Swinton and others talk about his life and his diagnosis in the background. “Because our time is fleeting like a shadow and our life shoots through the straw like sparks.” Jarman died in 1994 shortly after the premiere of the film. One of the many who were less fortunate than me.
I tell this story at the end of my book. It was published in October, and since then friends and strangers and everyone in between, work colleagues and primary school teachers, have been able to find out about my status.
“If I were HIV positive? Would I have dared to write this then? ”Yes, I am HIV positive. And today I dare. Because the world has changed. And me too.
Research continues. There are different approaches to cure HIV. Some researchers want to first wake up the viruses dormant in the body of infected people and then fight them: "Kick and kill". Others want to remove the virus with gene scissors. In the beginning, shortly after my diagnosis, my heart beats when I read about such plans. The thought of reversing it all is so tempting. I know better today.
A part of me
Today we sometimes say that something has become “part of a person's DNA” when something belongs to the essence of a person. HIV is actually in my genome. Not in all cells, but in so many that it would spread again, I wouldn't take any medication. Even if scientists could one day track down and kill each of these infected cells - even if they could cut out the virus and the last letter of its treacherous genome: it would remain a part of me.
It's been a long way to understand. And accept it. Sometimes, on particularly nice days, when the sky is bluer than usual, I'm even grateful for it. It's more healing than I ever hoped for.
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