Von Janos / März 2021
Viel habe ich nachgedacht über die Auswirkungen der HIV-Diagnose auf meine Psyche; zu Genüge gelesen über das Trauma, über die tapferen Aktivisten und Aktivistinnen, denen ich irgendwie schon mein Leben zu verdanken habe; über Medikamente, über U=U und wo wir heute stehen. Viel Zeit habe ich damit verbracht mir selbst zu vergeben für etwas, das in Worte fassen schwierig ist; Zeit für mich zu entscheiden, wie ich mit all dem leben kann – leben will – und lieben darf. Doch sehr wenig, wenn überhaupt, habe ich mir Gedanken darüber gemacht, was meine Diagnose ausgelöst hat in den Menschen, deren Dasein für mich so wichtig war. Und so habe ich zum Telefonhörer gegriffen – ich gebe zu, durchaus klopfenden Herzens – und habe zugehört:
«Also ich war natürlich erst einmal betroffen, umso mehr, weil ich es ja in einer Zeit erfahren habe,
in der Du ja akut krank und im Spital warst. Gleichzeitig war ich ehrlich gesagt auch ein bisschen verletzt, dass Du mir das vorher all die Jahre nie gesagt hattest. Wir waren in dieser Zeit ja wirklich sehr eng befreundet und ich war ja auch Teil Deiner Suche nach Heilung zum Beispiel mit der Makrobiotik usw. Das war für mich nur schwierig zu verstehen, dass wir zusammen durch all das durchgehen konnten, ohne dass Du mir etwas gesagt hast...»
«Why could you not tell me when I asked you if you were safe?»
«The very first moment you told me about it I could not believe this happened to us. Everything about our relationship was so beautiful. I finally found this amazing guy and we sat in this romantic restaurant by the beach at night, in a small island south of Thailand. Everything that night was magical for me, a 23 years old gay boy from small town in Indonesia. It was something, I never thought could ever happen to me. So when you told me about your diagnosis, it was like the sky falling on my head. All the excitement and happiness turned into fear.
Naturally, the first feeling I had was the sympathy that you, my boyfriend, would have to undergo the very difficult time in the future. Then it followed with the thought that I might be the one infected you knowing that I had a few unprotected sex prior our relationship. I was so scared to have it as I felt that I would be prone to get sick due to my unhealthy life style (lacking in exercises, eating unhealthily, smoking and drinking alcohol, etc. I started to put my self first, and what would happen to me instead of what would happen to him or to us.
Though the first thing that I felt was that sympathy to you, for some reasons after a few moments I could not help but thinking ‘what would happen to me?’ Since I still did not know about my own status, there was a feeling of : ’If I had had it too, then at least we would have faced this together’, followed with ‘but if it’s only him with this diagnosis, maybe I should walk away and ‘save’ my self from the difficulties laying ahead of me.’
It sounds so selfish I know but I am trying to answer your question with total honesty as you asked me.
Some moments later, the thoughts of ‘what should I do next?’ was replaced by the thought of ‘Now I should get my self tested, ASAP’. And I think what happened to me before the test was that I was trying to calm myself down to the possibility that I might have it too. Which if it happened, it meant I would have to change how I live my life almost entirely.»
«Du riefst mich an, ich müsse Dich sofort besuchen kommen in Berlin. Das tat ich. Ich wusste nicht genau was los war, aber Du warst schon einige Jahre irgendwie komisch zu mir und ich habe gespürt, da ist etwas. Du hattest mich oft gefragt ob Du bleich seist, ob Du Gewicht verloren hättest und ich wurde das Gefühl nicht los, dass Du mir etwas verheimlichst. Als ich Dich dann in Deinem Bett liegen sah, wusste ich Du bist todkrank. Du schnapptest nach Luft. Ich soll Dir einfach zuhören und Dich nicht unterbrechen. Es war wie ein Blitz, der durch mich hindurch ging und mich zerriss. Der Schock für mich war riesig, wahnsinnige Angst um Dich. Erinnerungen an meinen Freund Béla der an AIDS verstarb. Sofort Einlieferung ins Spital. Innerhalb von Minuten bekamst Du Bactrim, IV. Die Ärzte und das Pflegepersonal waren hoch-professionell. Ich erinnere mich daran, wie man mich gefragt hat, wen Du angesteckt haben könntest, mit wem Du in letzter Zeit Sexualkontakt hattest. Das wusste ich nicht. Du warst dann nicht ansprechbar, Dir hatte es die Stimme verschlagen. Wochenlang hast Du am ganzen Körper gezittert. Das war der Schock, Du warst in Todesangst. Eine Beauftragte der AIDS-Hilfe war innerhalb von Minuten an meiner Seite, hat mir alles erklärt und mich auch über die nächsten Wochen begleitet. Die haben das enorm gut gemacht. Es gab keine Besucherzeiten, und ich konnte jederzeit bei Dir sein. Ich verstand das damals nicht, warum Du nicht wolltest, dass ich mit niemandem darüber spreche. Einige Monate nach Deinem Spitalaufenthalt, wurde mir erst wirklich klar, wie haarscharf Du das überlebt hast. Dann begann sich auch meine MS zu verschlechtern und ich hatte einen Schub nach dem Anderen. Ich glaube dies hat der Schock ausgelöst.»
«I was scared. You were the first person to have told me about your diagnosis prior to us having sex so I was scared to think of how that would affect (and did affect, for a bit) my willingness to have sex with you. To be fair, I did ask you but I didn’t think about what the answer could’ve meant.
I was then a bit confused because my knowledge of HIV at the time was somewhat limited. I didn’t know what the implications were. It was also something I thought about whenever I thought about you. I went through a period of not being able to separate you from being HIV+; I could not distinguish between the diagnosis and you as a person. It’s difficult to explain but this is the simplest way to put it. I was also trying to come to terms with my desire to have sex with your HIV status in the back of my mind. I was then very impressed and charmed with your honesty. You didn’t have to tell me. You could’ve hidden it (as it is your right to) but for some reason you chose to be honest with me. I am still not sure why you did that. At the time we also did not know each other that well so there was no need to be as honest as you were I think. I was then relieved to find out about how easily manageable the virus is and how little it affects your daily life. I then began to compare it to something like diabetes where you could have to regulate your food intake, take your blood sugar levels often and even administer insulin. It became obvious that living with diabetes could be much more of a hindrance to your daily life than living with HIV and so I began to see how silly it is to think of it as a big issue at all. (of course this is because we live in a part of the world where treatment is accessible and this has a lot to do with how grave of an issue the diagnosis can be.)
Then I didn’t find myself thinking about it at all.»
«Ich habe irgendwie schon gespürt, dass Du HIV+ bist. Irgendwie hatte ich in Gedanken, dass mein zukünftiger Partner HIV+ sein wird. Ich hatte von Deiner Diagnose schon erfahren, bevor Du mir davon erzähltest. Dies kam schon in einem Gespräch bei einem Besuch bei Deinen Eltern raus. Ich war schockiert und auch traurig. Ich konnte am Anfang nicht glauben, dass das, was ich in Gedanken hatte, sich verwirklicht hatte. Zum Teil hatte ich Angst davor, was mir passieren könnte, weil ich einfach viel zu wenig über das Thema wusste. Ich hatte Dir schon damals vertraut und deswegen war die Angst bald wieder weg. Ich wusste auch, dass Du mir davon erzählst. Als ich Dich in Berlin besuchte und Du mir von Deiner Diagnose per Email erzähltest, war ich erstmals etwas enttäuscht, weil ich mir gewünscht hatte, dass Du es mir in einem Gespräch erzähltest und nicht per Email. Ich wusste aber auch, dass dies kein einfacher Schritt für Dich war. Ich war aber froh, dass Du genug Vertrauen und Mut hattest, um mir davon zu erzählen.»
«When you first told me my first thought was, like okay that’s totally normal. Obviously, I had just come out of a relationship with someone who was HIV positive. It wasn’t something I had trouble accepting. But then the second thought was – well, sympathy, because even though the disease is controlled with medicines physiologically, you still have to deal with stigma and you seemed like you were carrying a burden, especially after you told me the story with that guy in Copenhagen. As much as it seemed ridiculous, and that he over-reacted, but it was obvious that it affected you and that is not something that is easy to deal with. I’m glad you’re letting it out, that you’re writing this article, and that you’re freeing yourself of that burden. Just always remember: be gentle with yourself.»
«Non posso non scrivere su quel momento senza ricordarmi che mi sono emozionato con la sensazione di saperlo prima che tu me lo dicessi, il che per me è stato come magia, "una cosa dell'altro mondo", ma forse quello che ti interessa sono i miei pensieri e reazioni in maniera piú razionale, per cui cercheró di raccontarlo cosí.
Per me non è stato un grande shock, perché ho giá conosciuto persone sieropositive e nel mio piccolo mi sono informato sin dai 18-19 anni sulle forme di contagio, prevenzioni, e trattamenti, oltre che realizzare esami periodici ed avere amici che lavorano nel settore pubblico e privato in campagne per incentivare la prevenzione e soprattutto ridurre lo stigma sociale con informazione. E ancora, sapevo giá che non rilevabile vuol dire non trasmissibile.
Gli aspetti che mi hanno lasciato molto pensieroso sul tuo caso sono altri, come per esempio il fatto di non sapere come e quando sia successo la tua esposizione al HIV, arrivando al punto anche di attribuirlo a una punizione divina. Devo essere sincero che nei momenti nei quali io ho avuto rapporti sessuali che potevano essere di rischio sempre immaginavo che se fosse quello il momento che avessi contratto l'HIV, l'avrei voluto cancellare dalla memoria. Pensavo che un momento di piacere non valeva il portarsi avanti una condizione fisica che avrebbe avuto conseguenze per tutta la vita, pensavo che forse avrei odiato la persona che me lo avesse trasmesso. Ti dico tutto questo perché in alcuni momenti ho pensato che tu forse sapessi il momento nel quale hai contratto l'HIV, ma come succede nel caso di traumi molto forti, nei quali non riusciamo a processare l'informazione, semplicemente la cancelliamo (volontaria o involontariamente).
Quello che mi ha sorpreso di più non è il fatto che tu abbia l'HIV, ma si come tanti aspetti della tua vita siano stati influenzati da questo. I rapporti, il lavoro, le relazioni, il sesso. Non è assolutamente una critica, ma semplicemente sono rimasto affascinato e curioso.
Ricordo che quando mi hai raccontato di alcune persone che avevi conosciuto su Grindr o altre app, generalmente erano sieropositive e ho pensato che forse per te c'era un qualcosa che ti attirava nel conoscerle e nello stare con loro, io non so a che punto era una curiosità puramente di scambio di esperienza oppure sessuale.
Di recente ho conosciuto un ragazzo che è sieropositivo e quando gli ho chiesto com’è stato per lui scoprirlo e convivere con questa condizione, lui mi ha risposto che sin da quando era molto giovane sapeva che era inevitabile, perché lui è sempre stato sesso dipende e nel suo immaginario e per sentirsi completo non c'era spazio per prevenzioni come usare il preservativo, anzi, forse il rischio all'esposizione era quello che voleva. Mi ha anche detto che in alcuni momenti ha pensato in partecipare di feste organizzate di proposito per la trasmissione a persone che lo vogliono e tutto questo mondo che mi ha descritto mi ha fatto pensare molto. Non che non so sapessi, ma mi sembrava una realtà distante, e mi ha colpito che una persona così vicino abbia vissuto tutto questo.
Quando gli ho chiesto com’è per lui adesso sembra che non gli importi tanto. Prende le medicine tutti i giorni, tutti i suoi amici, parenti, colleghi di lavoro e di universitá sanno che lui è HIV+ e non si sente trattato di maniera diversa o pregiudiziosa per questo. Non só che dire, ma mi ha fatto riflettere molto come una stessa cosa o situazione possa essere vissuta in maniera cosí opposta o diversa.»
«Ich war eigentlich gar nicht überrascht, es war wie ein ehrliches, fast treues und intimes Gespräch.
Ich dachte, eigentlich machst du das mega toll und bist immer so ausgeglichen, es ist wirklich ein fester und schon integrierter Bestandteil deines Alltags - da war es für mich ausser Frage es auch nur im Ansatz schräg oder komisch zu empfinden. Bin wohl einfach dankbar, dass du ein sehr beeindruckendes Beispiel bist wie integral du damit umgehst und freu mich, dass du es auch mit deinem Umfeld teilst und eine Fragestellung rund um das Thema HIV in unseren Freundeskreis trägst.»
«I remember the day clearly. The news came prior to a message that said "I have a secret" to which I responded jokingly "you're married, right? We had known each other for a few months and I was convinced that you were the love of my life. You were so perfect, with those intense blue eyes and a smile that filled the cloudiest day with its light... and then you told me: I am HIV +. Honestly, I felt how my world fell apart. I was completely shocked by the news and didn't know what to say. I was very angry, but the anger was not at this wonderful human being, but at whoever had harmed you in such a way by infecting you with this disease. I had a lot of anger for who could unscrupulously mark your life this way forever.
At that time, I was very ignorant about the subject. I felt very sad, I felt that our relationship could not continue and that my heart had been torn apart. If I had been as informed as I am now, possibly the result would have been different. Little by little we distanced ourselves and then nothing ever was like in those magical days between the two of us.
I was scared and felt that you were slightly annoyed at my ignorance. I don't think it was the fault of either of us. Today we are good friends. I adore you and I love you even in a way, perhaps, purer.
I must thank you so much, for educating me, for teaching me, for being the first to tell me in my life. And above all, because thanks to you and what I learned, after several years I was able to meet another wonderful man, also HIV +, and with whom I also lived many happy moments. Ironically, these two people have been the ones who have taught me the closest thing to what they call love that I have ever experienced in my life.»
«I have dated several guys that are undetectable. And their status doesn’t matter to me at all. I’d marry a guy who is undetectable without hesitation. Because it doesn’t affect me personally.»
«I was very surprised. I heard of people having it, but never thought that it would happen to my close friend. I was sad, not because you got HIV, but the fact that you have been dealing with this situation for a long time all alone, and to think about how hard it must have been for you to come out to me, friends, and your family. I was also grateful that you finally told me. High respect. I believe it is a feeling of release for you..at least to some extend. After we talked more about it, I also think how strong you are to fight with the diagnosis and the stress that come with it. I also realized how little I knew about HIV really.»
«Our joint experience with HIV began when we went back to your apartment in Berlin, after spending yet another marvellous and exhilarating evening together. I believe that evening was the first time we kissed. I felt that we were diving together into an atemporal ocean of relations and sharing so I wanted to be honest, transparent and open with you. Or perhaps, I yield to the moralistic compass which I perceived as a signifier for the potentiality of trust forming between us. Either way, I wanted to tell you that I am HIV positive.
Something in the way that you responded to me sharing my status with you, somehow informed me that you knew what I was talking about and not only because you were well informed or empathic but rather, I could sense that you too had an empirical duet with HIV and that you knew first hand the terror that is brought along by the stigma associated with it.
But it was also clear at that moment that you could not and were not going to share your experience with me right there and then. I knew better than to even ask you about it. I felt you.
Then a couple of years later I was in Berlin again and I knew that you were not feeling well even before I took that trip. We decided to meet again. To connect. Reconnect.
I was very worried on my way to meet you because I wasn’t sure what you were able to share with me at that point and I was afraid that the social stigma would silent you and hinder our ability to dive deeper into our special atemporal ocean. Also, because part of me knew what was going on as I remembered very clearly my impression from the time when I shared my status with you, I was afraid that if I had to witness you struggling so much with telling me about your status it would reinforce fear, pain and shame that I was still feeling about my own journey of living with HIV or rather living as an HIV positive person.
When we sat at that restaurant, across the street from the hospital, in that cold and rainy evening, and you finally shared with me what had already been long known. I believe my first feeling was relief. I believe I was relieved that you no longer had to hold that secret with you. At least not with me. That you were not alone in it. That you were not scared of it anymore. At least not as scared of it anymore. The feeling that followed, as I recall it, was sadness. But not sadness of you having HIV rather sadness that we live in a world where still sharing our HIV status requires bravery. Still today, one needs to be courageous to share their HIV status. I am not sure what is easier, to share one’s HIV status with a complete stranger or with someone they truly love and care for.
I was also really grateful and honoured that you wanted and chose to share this information with me. What had been known was now told. Unsurprisingly, that was another dimension added to our genuine and invaluable connection. Our relation is a universe. A galactic constellation filled with convergence and intersections. Sharing history, present and probably future of having HIV is one of these convergences. We share deep connections, this is either one of them or one of the reasons to why we can access and practice these connections.
Thank you for sharing this with me. Thank you for sharing other things with me.
Thank you for being in my life.
Thank you for letting me be in yours.»
«I think because you told me of your diagnosis the first time we met, I didn’t think too much about it, to be honest. In my mind it just registered as a „fact“ about someone new you just met. Understanding what a HIV+ status and „undetectable“ means, certainly helps. I tried not to ask invasive questions and just listen, and let you shape the narrative as much as you felt comfortable.
In hindsight of course, I do understand that it must have taken a lot of courage to disclose your diagnosis right from the start. Sadly there is still a lot of stigma and shaming surrounding HIV even in the most informed spaces.»
«My first thought was that I was not entirely surprised, because I knew that you had been through something major healthwise some years back, though I hadn’t known the details and hadn’t wanted to pry. I regretted not having known earlier, because in not knowing, I didn’t have the chance to be there for you in ways you may have needed when you received the diagnosis and in the ensuing years. I was concerned that you might ever have thought you’d need to hide it from me, or that I would judge you simply on the basis of a medical condition. My next thought, of course, was that I hoped you’d know you could count on my support and friendship no matter what and anytime you might need it. I just wished I could reach around the globe and give you a huge hug, and tell you that I love you and I’m here for you always!»
«Ich kann mich noch gut an den Tag erinnern, als wir uns kennengelernt und zusammen Kaffee getrunken haben. Noch während der ersten Tasse Kaffee hast du mir von deiner Diagnose erzählt und mein erster Gedanke darauf war: Wow, er ist ganz schön offen, direkt, interessant und so ganz ohne Scham. - Bestimmt eine sehr offene, spannende und interessante Person. Eine offene, spannende und interessante Person bist du alle mal. So habe ich dich zumindest die letzten Jahre wahrgenommen. Mein Gedanke von „Ganz ohne Scham“ hat sich - jetzt ausschliesslich auf deine HIV-Diganose bezogen - etwas anders gezeigt: Aus Erzählungen von dir habe ich erfahren, dass du sehr wohl und über Jahre Scham verspürtest, dies aber verstärkt noch vor unserem Kennenlernen war.
„So ganz ohne Scham“ - Ja, so nehme ich dich auch heute noch war, auch wenn ich ein paar Mal bemerkt habe, dass deine Diagnose dich einholt und kurzzeitig belastet. Ich denke du hast in letzter Zeit einen riesigen Schritt in Richtung Akzeptanz und Selbstbewusstsein gemacht und wünsche dir, dass du dein persönliches Ziel mit noch wenigen und kleinen Schritten auch so erreichen magst.»
«My first instinct was the need to protect you and help you get over the fear and shame that I saw was accompanied by that diagnosis. Even when I knew it was not on my power to give all protection and healing you needed, I tried my best to help you in that process. You always showed so much kindness and empathy, some important qualities that I've always tried to be part of me too. Growing as a gay person we are confronted with fear and shame since very young, and that diagnosis is something many of us fear so much. It's in part because of the possible health complications, but a big part of it comes from the stigma that we fear that diagnosis might bring.
I had been confronted by the diagnosis of a friend years before I knew about yours. Initially I felt sorry for him, but with time I understood that he was the same person I had known for many years, him being open and brave, confiding that information, just meant that we were a bit closer as friends. It also helped me understand that if I ever got that diagnosis, I would still be myself.
So when I was confronted with your diagnosis, I also saw you were open and brave, despite the fear and the shame, it was the most important for me to make you understand that you were the same person to me, and if anything had changed, similar that friend, you were simply a bit closer. It was hard, but it was also beautiful somehow, I could witness you growing, opening up and being more yourself, the kind and beautiful person I've had met almost a year before.
Regarding my own health, I was never afraid, you had always been very responsible on practicing safe sex. And I had also been responsible about protecting myself. I think having responsibility for ourselves is very important to have and overcome the HIV subject. But even more important is to be kind to ourselves and the people around us, to know that anyone who gets that diagnosis, would still be who they are, even ourselves. And we could even become better versions of ourselves. Thanks to the advances in medicine many HIV+ people just have to deal with some minor (in the big picture) inconveniences, the way we all will have to deal with as we age and one or other health condition needs to be taken care of. I hope society catches up with medicine so we can erase the unnecessary stigma that an HIV diagnosis still brings to so many.»