AHF Ukraine’s Alyona has turned her personal journey with HIV into a powerful platform for hope and empowerment. Featured in Divoche Media, she shares her courageous decision to openly embrace her status, challenging stigma and inspiring understanding within her community.
I was born and lived until I was 12 in a small provincial town in the Luhansk region, just on the border with Russia. My family was a part of very-well educated and intelligent society: my mother was a music teacher, my father was an artist, and my grandparents were working as managers at the coal mine. I excelled in school and showed a great promise. Even though my father left the family when I was five, I always felt immense love from my family.
After finishing school, I graduated from the Institute of Management and Business with a degree in Public Relations Management. Studying was easy for me, which worked to my advantage, as I was deeply engrossed in my first real relationship, which took up a lot of my time. My boyfriend was much older than me and seemed to embody success. I, on the other hand, was used to living on the edge of poverty. So, the dollars my boyfriend would occasionally bring from somewhere in significant amounts left a strong impression on me.
For a while, I felt like I was floating on air from happiness and love, until one day, I received a heavy slap across the face. And then another one, and another one. Over the smallest things. Before that, I had never been hit in my life. As I sat there, sobbing in shock, not understanding what had just happened, my boyfriend composed himself and began apologizing. He was so sincere that I believed him when he said it was the first time and that he deeply regretted what had happened.
It’s a pity that back then we had no understanding of domestic violence, because over the next year, I lived through the full scenario of classic abuse. Let me put it this way—after that first incident, I ended up with a broken jaw in two places, a stab wound to my hand, a gunshot wound to my chest, and much more. He had enslaved me, and at some point, I realized that there was nothing left of the cheerful, sociable, and ambitious person I once was. There was nothing left of me. That’s when I decided to leave.
I hid at my mother’s house. I did not leaving the house for about a month, but soon I regained my footing. However, I had no idea what to do with myself—how to apply the knowledge I had gained at university or what to dedicate my life to. I vividly remember a moment on a bus, listening to a radio report about volunteers giving food packages to HIV patients in a hospital on World AIDS Day. I was deeply touched and thought about how difficult it must be to work with people who are dying.
When my new boyfriend, a psychologist, invited me to visit the HIV Center where he worked, I agreed. I’ll never forget walking the corridors, discreetly observing the patients. I looked for signs of a deadly disease but found none. This was in 2006, a time when HIV therapy was already available in Ukraine but in very limited quantities. Medications were prescribed only to those who were already in the late stages of the disease.
Of course, there were people who looked very thin and weak, but in my mind, AIDS was surrounded by a sense of hopelessness, despair, and vice. I thought that people with HIV were those who had hit rock bottom and that the disease was their penance for straying from the moral norms of society, indulging in forbidden pleasures like drugs, promiscuous sex, or something else I couldn’t even imagine. And all of this was supposed to leave a significant mark on them.
But the patients in the corridors of the Center looked like ordinary people. I was struck by this realization and understood then that nothing in life interested me more than this. I decided to stay on as a volunteer.
My new boyfriend cared about health, so before we stopped using condoms, he asked me to get tested for HIV. The test came back negative. Meanwhile, I started working at the organization, completed HIV counseling training, and quickly became a senior social worker.
I was doing work I loved, helping people, and had someone I loved—what more could I ask for?
One day, while reading the book People and HIV, I came across a description of symptoms characteristic of the early stage after HIV infection—they were identical to what I had experienced during a strange illness.
That winter, I became very sick and felt strange. It was like having the flu, but without a sore throat, runny nose, or cough. I got tired of going to doctors—none of them could make a clear diagnosis. After three weeks, it passed, but I remembered it.
Later, as I was studying the book People and HIV for self-education, I stumbled upon a description of the symptoms typical of the period immediately after HIV infection—they were exactly like what I had felt during that strange illness. So, I decided to get tested just in case and had my blood drawn for analysis.
On the day I received my results, the psychologist working in the “Dovira” center was someone I knew. When he read the lab report, the expression on his face changed. He said dryly, “Alyona, antibodies to HIV have been detected in your blood.”
Why is he saying the phrase we were trained to use when informing patients about a positive result? I laughed, but he looked at me seriously and repeated the statement. I don’t remember much after that—how I took the report, left the office, or made it back to our workplace. My colleagues, seeing my state, immediately understood what had happened.
I remember it as if it were yesterday. Zhenya, my colleague and friend, hugged me tightly and said, “Welcome to the club. Now you, too, have the right to conduct peer-to-peer counseling.”
People react very differently to being told about a diagnosis. Over the years of my work, I’ve seen hysteria, sadness, laughter, tears, silence, and indifference. I, however, felt the need to tell everyone about my HIV status—close friends, distant acquaintances, everyone. Now I understand that it was important for me to see their reactions, to feel their attitude toward me, to make sure that everything was okay and that no one turned their back on me. And I was fortunate that this is exactly what happened.
I shared the news with my long-time friends, and none of them stopped communicating with me. I remember the reaction of my friend Oleksandra, who asked, “What do I need to know to talk to you?” I was deeply touched—she was ready to do whatever it took: take preventive medication, wear a face mask, or who knows what else, just to stay friends with me. Through tears, I laughed and explained to her how HIV is transmitted.
My boyfriend and I broke up—I couldn’t forgive him for his deceit. He got tested and turned out to be HIV-positive. A few years later, I warned his future wife about his HIV status, which turned out to be very important for her.
I can’t say I wasn’t concerned at all about my status. No, of course, I would have preferred not to have HIV. But I didn’t feel devastated either. I already knew that:
- HIV is a chronic condition that can be controlled with regular medication, which is accessible.
- I wouldn’t transmit HIV to my loved ones through daily interactions or while communicating with my friends.
- I wouldn’t pass HIV to my child during pregnancy and childbirth, nor to my husband during sex, even without a condom, as long as I take the medication.
- I have the same opportunity to live a long, happy, and fulfilling life as anyone else—if I continue taking the medication.
- I need to value, cherish, and support my wonderful body—both physically and psychologically.
What about my personal life?
“It seems like my personal life hasn’t worked out, so I’ll dedicate myself to helping others,” I decided. But at the very next event, I met my future husband. After a month of talking, it became clear that we loved each other and shared the same dreams: to build a family, have a child, and live our lives together. But there was one “but”—my HIV status.
Even now, in our HIV-positive community club START, the most frequently discussed topic is disclosure of HIV status. Should you tell someone about your HIV? To whom? When? How? These questions trouble everyone. Through peer support, we help provide answers to these questions—offering advice and guidance on the best course of action.
Back then, however, I didn’t have the START Club, and I had to figure out on my own how to disclose my HIV status to the person I loved.
That evening was wonderful— we were walking around the Podilskyi District until late at night, admired the Dnipro River on the embankment, enjoyed something delicious to eat, and laughed. But I couldn’t relax because I had decided to tell him tonight. My beloved started first: “You know, I want to tell you something—I love you.”
I interrupted him: “You know, I also have something to tell you. I have HIV.” His reaction was unexpected. He exhaled with relief because he had been worried the whole time that I might have another boyfriend. And this was “just some HIV.”
Of course, I had to explain everything he needed to know about HIV—that we needed to use condoms, that it was better for him not to use my toothbrushes or razors—but overall, he had no prejudices.
After this experience, I advise everyone with an HIV-positive status not to be ashamed of it in front of their loved ones—people fall in love with the person, not the virus! If he or she gets scared, then they’re simply not your person.
Planning for a child
When, after getting married, we started talking about having a child, I had no idea how to go about it properly, as there was a risk I could infect my husband during conception.
Today, everything necessary to prevent this is available—PrEP for the HIV-negative partner and antiviral therapy for the HIV-positive individual. But back then, we had to take a risk. I wouldn’t recommend this to anyone. It’s better to call a hotline and get professional advice. However, we were lucky—my husband is still HIV-negative to this day.
I became pregnant, and like all HIV-positive pregnant women at the time, I received medication to prevent mother-to-child transmission of the virus at 24 weeks of pregnancy. I gave birth at Maternity Hospital No. 4, which has an infectious disease department.
I turned out to be a valuable patient for the head of the department—he immediately recognized how useful my counseling skills could be for his patients. As a result, I took on the role of an informal consultant, and doctors began directing women with HIV to my room—especially those who had just learned about their status right before giving birth (I couldn’t have imagined how many such cases there were!).
In addition to gaining valuable experience, I also earned the respect of the medical staff—they saw not just a patient in an HIV-positive woman, but almost a colleague. Looking back, I realize that this experience marked the beginning of my fight against stigma and discrimination in society toward people with HIV—a fight I continue to this day.
In June 2009, I gave birth to a beautiful son weighing 3.315 kilograms. Unfortunately, breastfeeding is still strictly prohibited for women with HIV, and during the first week of his life, my little one had to take antiviral medication in syrup form. However, after a year and a half, he was taken off the registry—I had given birth to a healthy child.
After maternity leave, I returned to work at a new Dovira center, where I worked as part of a team with other HIV service specialists. Together with doctors, psychologists, and nurses, we came up with new ways to teach our patients to love themselves and value their lives and health—even with HIV. For example, I organized seminars for those who had just learned of their diagnosis and were starting therapy.
Over time, I noticed that our patients adapted much better to life with their new diagnosis when they had the opportunity to interact with one another outside of the training sessions.
It’s been five years since then. I now work with the AHF Ukraine team as a Community Communications Coordinator, developing the START Club—a variety of events for patients where they can communicate with each other and share their experiences. By the way, this format of events was experimental when we first implemented it in Ukraine. Today, the START Club model has been adopted in other European countries, as well as our hotline, which saved many people living with HIV at the start of the full-scale invasion, when Ukrainians were forced to flee without any medical support.
Our hotline team worked to find them medications and doctors wherever they ended up—be it Europe, Thailand, or the United States.
I am truly happy. I have everything. I even have a dream that the HIV epidemic in the world will be eradicated. I know it’s possible. For this to happen, everyone at risk of infection needs to get tested for HIV. Everyone diagnosed with HIV must receive treatment. And those who are not infected must take protection seriously.
