Mother Courage: Surviving Stigma, Embracing Truth, and Fighting for Life in Albania
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- 4 min read
By Olimbi Hoxhaj
From silence and discrimination to advocacy, dignity, and hope.
The year 2003 divided my life into two distinct eras: the time before the truth, and the relentless fight that followed. When my husband passed away in 2001, the official medical explanation pointed to severe liver complications. Yet, the atmosphere at his funeral told a completely different story. At my husband's funeral, people stood at a distance. Conversations stopped when I approached. No one explained why, but I could feel it: something was terribly wrong. After pushing through the wall of silence and demanding answers from healthcare providers, the devastating reality finally emerged. He had died of complications linked to AIDS.
That revelation was only the first tremor of an earthquake that would shatter my existence. Following medical advice in 2003, I took a test. The result confirmed that I was living with HIV. Nothing prepared me for what came next. When I learned that my son was also living with HIV, I felt a fear no mother should ever have to experience. The agony deepened into an unimaginable abyss. Every night I would look at my son while he slept and wonder what kind of future awaited him. My greatest fear was not death. It was the possibility that he would grow up believing he was less worthy because of a virus. A mother's instinct is to protect her child from every harm, yet I was staring at a diagnosis that, at the time, felt like a fast-approaching end.
The Suffocating Wall of Stigma
In early 2000s Albania, life-saving antiretroviral treatment was virtually non-existent. However, the virus itself was not the most immediate threat. The true danger was the suffocating societal stigma. Fear thrives in the absence of education, and the local community reacted with swift, brutal cruelty. Parents at the neighbourhood school organized against me, labelling me a criminal. They falsely accused me of plotting to infect the local children and demanded that my son be expelled. I was abruptly fired from my job. Basic human dignity was stripped away; shopkeepers hesitated to take money from my hands, and neighbours refused to share the same physical space. My family was thrust into absolute isolation. It was a period defined by closed doors and averted eyes.
Turning Despair into Action
Despair is a heavy anchor, but survival demands movement. There came a moment when I realised I had two choices: remain silent and accept the future others had decided for my family, or speak out and fight. I chose to fight. I refused to let my son become a mere statistic in a forgotten medical registry. Without truth, there can be no dignity, and without a fight, there would be no future. Since the Albanian healthcare system offered no structural solutions or support networks for individuals living with HIV, creating that solution became my singular life purpose.
I founded the Albanian Association of People Living with HIV/AIDS (AUPLHA). The mission was exceptionally clear: to demand access to life-saving medications, to protect the fundamental rights of patients, and to drag the reality of HIV out of the shadows. I knocked on the doors of ministries, confronted public health officials, and spoke publicly when others hid. The silence had to be broken so that the healing could begin.
The Heavy Burden of Motherhood
The burden placed on mothers in these situations is incredibly heavy. When a woman receives a diagnosis, society frequently bypasses medical care and goes straight to moral judgment. Vertical transmission—the passing of the virus from parent to child—remains a source of deep personal trauma for me. The failure of health institutions to prevent this transmission is a profound failure of basic human rights. I have dedicated decades to ensuring that pregnant women receive early testing, proper counselling, and essential medical care. No mother should ever have to watch her child fight an entirely preventable battle. An empowered mother changes the trajectory of a whole generation, and ensuring maternal health is the cornerstone of a healthy society.
A Global Recognition of a Silent Battle
Advocacy is an exhausting path, often walked in solitude, yet it eventually brings profound structural change. Recently, a documentary chronicling this journey, titled "Olimbi - Mother Courage" and directed by Karlo Mlinar, won the Story Board Impact Award at the Geneva Health Film Festival. Standing in that reception hall in Geneva, I thought about the woman I had been twenty years earlier: frightened, isolated, rejected by her community, and uncertain whether her son would survive. That woman could never have imagined that her story would one day be recognised on an international stage. That award does not just belong to me. It belongs to every single person fighting stigma in absolute silence. It validates the tears, the protests, and the sleepless nights.
This is why "Olimbi - Mother Courage" is about more than HIV. It is about courage, dignity, and the power of truth. Inspired by my own journey of living openly with HIV and advocating for the rights of people living with HIV for more than two decades, the documentary film seeks to transform a personal story into a source of hope and action for others. If a story can help even one person feel less alone, less ashamed, or less afraid to know their status, then it has already achieved something meaningful. Because ending AIDS requires more than medicine alone, it requires trust, empathy, and the courage to reach people where fear still exists.
The Fight Continues
Today, at 59 years old, I look back not just as a survivor, but as an architect of change. The medical landscape in Albania has improved. Treatment is available, and institutional approaches have modernized. Nevertheless, community stigma still lingers in the dark corners of society. Today, despite advances in HIV treatment, fear continues to prevent many people from seeking testing, information, and support.
Across the Balkans, countless individuals still carry questions they are afraid to ask aloud: “Where can I test without being recognised?” Behind every statistic is a person navigating uncertainty, stigma, and the fear of being judged.
The fight continues for better access to community-based testing, comprehensive social services, and absolute equality. Stigma can be defeated, but only through relentless courage, unapologetic truth, and fierce advocacy. Every person living with HIV deserves to live not in fear, but in dignity, respect, unconditional love, and hope.
