While working with youth in the SRHR and HIV/AIDS sector, I have realized that most adolescents and youth either affected or living with HIV/AIDS share a rich bond that is often not considered in the HIV community response. Despite youth coming from diverse indigenous groups, they share common values and beliefs that facilitate healing, positive meanings, and confidence in the future of their health. While adherence clubs are crucial in positive living, there is a gap in coping strategies, especially in times of stress and adversity of loss and grief. The gap also extends to thinking beyond talks about treatment, healthy living and the future. In South Africa, the continued high burden of HIV offers a lethal legacy that has left devastating effects on youth’s social relations such as friends, family, teachers and role models. However, there is still hope and the turning point of the tide is seen among young people who have accepted their status through, and beyond adherence clubs led by peers for change.
From program implementation lessons over the years, once young people have a deep understanding of what works and needs to be done, they are committed. The grassroots adherence clubs for young people living with HIV have become a valuable edutainment resource, promoting key information to young people and building confidence in establishing thriving social networks. Beyond these clubs, youth have given received support on initiatives for income generating activities. “We have to learn to live beyond HIV and plan for the future, family and finances,” a 16-year-old female respondent said. Despite youth struggling to cope with challenges like peer pressure and adhere to treatment, youth initiatives of income generation are growing with a long-term vision. This vision shows that as long as they plan for the future now, they will also see success stories of family members living positively and healthily into adulthood.
Youth club activities extend to supporting newly diagnosed youth with a collective “food for life” project to promote adherence. Clubs could meet daily to take antiretroviral medicines together to make sure they leave no one behind as a mantra of communal response, resilience and treatment adherence. The messages of hope and resilience from young people is that HIV is no longer about the adults only but also us the youth, and as young adults we have to come together and make it work, picking up the pieces and moving on. Despite persistent challenges that threaten adherence issues, e.g. stock outs of ARVs, inaccessibility to contraception and discrimination, young people in some communities are excelling remarkably.
Having a strong passion for gender issues, I am without a doubt that many young women feel empowered and have found means to pave a positive path. Through interviews and open platforms of discussion young women have highlighted how they realized that acceptance of their HIV status is actually power to make a difference in their lives despite challenges they face, including leadership conflicts in the sector that often undermine their voices and lessons. Yet, there are stories of hope, resilience and opportunity for us all to engage with and learn. Among these resilient young women, I most am touched and reminded of one young lady in particular.
Gugu, a 27-year-old young woman activist fighting against HIV stigma and discrimination emphasizes acceptance as the first step to healing, forgiveness and self -care. She is the founder of Break the Silence Mzansi campaign focusing on HIV and gender-based violence, a member of TAC and previously a member of Survivors of HIV SA team. Her opening statement was, “Once I knew my status, it wasn’t more important to point fingers at the person who had infected me. I was more into caring for my health and that responsibility made me stronger. For me, I was no longer a victim. I am an overcomer, survivor, and fighter.” A concern raised was a need for education at community response level to deal with discrimination and stigma that continues to kill many young people making it difficult to accept their situation of living with HIV. “I don’t want to see my peers go through the same journey. I have a made pledge to speak out, I will be a voice of voiceless” says Gugu.” She adds that, “We need more knowledge surrounding HIV because stigma kills. Not everyone living with HIV has fully accepted their status—it’s not ignorance but stigma and discrimination. So, I don’t care what people say about my HIV status, but what about those who still find it difficult to accept. That’s why I fight against stigma and discrimination toward PLHIV.”
For many young women in South Africa being resilient is key to positive living and planning a future beyond their HIV status. Most young women share stories of self-growth, and with mostly very rough and difficult beginnings. For some, the ability and capability to do more than your status is strength and a realization that more is possible. Another story from Lekoane, a 25-year-old young woman is one shared by many girls and young women. For Lekoane, the establishment of a support system that built her up was crucial and has kept her going in her lived reality—hence she emphasizes support from her partner, who is a pillar in her life and constantly seeking inner peace and mentoring to grow. This story highlights the importance of male support and participation, mostly due to hegemonic masculinity and the patrilineal nature of African societies. As one who found the source of power from within, Lekoane she writes:
"Resilience is having the capacity to bounce back or recover quickly from any tough or hard situation, difficulty or challenge, as a young woman living with HIV. I discovered the many tools I use and philosophies as I grow up. After losing my parents I thought my life was over. I had no vein of hope left in me; I just could not hold on any longer. But life just had a way to force me to face the situations that I kept running from. My partner is the best thing that has ever happened to me. She is very supportive and makes me feel that I am living with HIV and that I must accept myself as I am. She taught me about meditating so that I can be able to heal my inner self –it is working like a miracle. Mental health is important; therefore, my peace of mind is a priority. For me waking up every morning is a serious privilege. So, I took a personal vow that each and every day of my life I will make one or two people happy so that they can be able to see their worth in life. That is what keeps me going daily."
The stories from youth in South Africa underscore an urgent need to work with young people to have this outlook on effective prevention, treatment and care strategies for them and support beyond treatment adherence. Sibongile Tshabalala, National Chairperson of the Treatment Action Campaign (TAC) acknowledges this revolutionary and power of young women’s resiliency as an area to contribute to and build up on change. “Young women within the space of activism, and members of TAC are growing to be independent, and be strong women leaders of South Africa. Our world, the world of female, is in safe hands with these kinds of young women leaders for as long as we continue to support them and listen to the ideas for response at the local level.” The stories are compelling and collectively call on communities everywhere to demonstrate their willingness to confront difficult issues where young people, especially girls and young women, are rallying to support each other. While their stories may seem small, and they may be, but the difference they make, and more importantly, the hope it creates is the greatest opportunity we have to defeat HIV/AIDS.