Blog items for the Youth Force

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Noah Junior’s Story

By Noah Junior Tiago

When telling my story, I always start from the beginning. I am an orphan who lost both parents due to HIV/AIDS. My Mother left both my brother (who is HIV negative) and me. After my father passed away in 2005, my brother and I were taken to our grandmother. But by then, she was very old and couldn’t help herself. She couldn’t manage the monthly medication refills and could not afford food. Due to this, my aunt decided that she should look after me and so I was adopted by her. My aunt was a widow who had lost her husband and therefore she lived alone. She was a hard-working woman that ran rental houses. My aunt’s brother, my uncle, also lived in one of these houses with his wife.

Due to now having moved areas, I had to be transferred from my original healthcare facility to TASO Mbarara. This healthcare facility was great, and I easily received my medication refills every month. It was also only a few kilometers from where my aunt’s home so I would pay less money when traveling and sometimes I would even walk there. Back then, I was still young and therefore my uncle’s wife accompanied me whenever I collected my monthly refills. One day on a sunny Wednesday, I arrived at TASO and was told that I was HIV positive. I was horrified and in that moment, I replayed the terrible statements that my primary school had said about the virus; AIDS HAS NO CURE, YOU WILL DIE. I remember my uncle’s wife telling me that I would die if I didn’t take my medicine. After I arrived home and told my aunt about my status, she also said a similar thing to my uncle’s wife.

Due to only being 13 years old, I didn’t know how to use the medication. I had to take them every day at home and often I was alone when taking the medication. I felt isolated – I hated myself and everyone around me. Whenever I took my ARVs, I would remember what people said to me, “take your meds otherwise you’ll die”. I would then take them quickly so that I could get better faster. I wanted to take more because I thought this would speed up the process. I eventually took double the dose. This caused horrible side effects, such as loss of appetite, fever, dizziness, and vomiting.

One day, after arriving at TASO, my counselor noticed something wasn’t right and so she asked my uncle’s wife what was wrong with me. My uncle’s wife could not tell the counselor what happened to me, so the counselor gently pulled me aside and asked me directly. I remained silent and she asked again. Finally, I managed to find the words to tell her, “I take my drugs alone without any supervision. My aunt tells me I will die if I don’t take them. I feel like I should die or live alone in this life.” This was a ground-breaking moment for me because I realized how alone I felt.

After arriving home, my aunt reassured me that now she would be the one who would supervise me while I took my ARVs. After this, we became very close and today, I still feel as if I am her biological son. I always felt supported by her and found she was often there for me by providing me with things that I needed. However, as I grew older, things became more difficult. When I reached secondary school, I lived in the boarding section of the school. Now that I was an adolescent, I started seeing girls and became responsible for my actions. I would go to TASO alone to receive my ARVs refills and I made decisions for myself, even if they were reckless ones.

Due to staying in the boarding house section, I was forced to take my ARVs in the school dormitory hall. This made me anxious and afraid of judgment from my peers. I was also a school prefect and so I didn’t want people knowing about my status in fear that it would tarnish my popularity. Due to this fear, I would sometimes skip days of taking my medication, and taking the ARVs strictly depended on whether people would see.

One day, I got a call from my aunt asking me to come home because she had something important to tell me. After arriving home, my aunt said, “You are now older and can take care of yourself. The fact that your parents died from HIV doesn’t mean that you have to die. You can still live for many years because nowadays, PLHIV lives the same amount of time as an HIV negative person”. I didn’t understand why she was telling me this until she added, “Someone at TASO has told me you are not taking your ARVs at school. TASO is worried and they want to see you.”

The following day at TASO, I was told that my viral load was too high. I was so surprised and shocked too. Despite this, it still didn’t make me understand the importance of adherence and so I still avoided taking my medication. My friends were also beginning to suspect that I was taking something. One evening, my friend saw me opening the bottle of ARVs and asked me what they were. I didn’t know what to say in embarrassment and from then on, I stopped taking them completely. Luckily, I eventually told my counselor this who then told my aunt.

Once my aunt and counselor knew about my fears, things became better and I also started receiving support from my school headmaster. Eventually, I became open about my status and despite my previous fear, my friends were actually supportive. I became a youth peer leader who taught my fellow peers about HIV. In 2017, I was tested with a low count and since then, I have never been tested with a high count. I am now undetectable. This achievement had a lot to do with the support I received from those around me.

Due to my leadership skills, the TASO community allowed me to take part in the trainers for the TOT which was held by Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). Thereafter, I was recognized as an Ariel Youth Ambassador. In 2019, I took part in the Ambassadors Reunion and I was able to tell my story to many PLHIV. I also heard their stories which made me feel I wasn’t alone. I want to give thanks to EGPAF for giving me a platform where I could tell my story to many other PLHIV in different areas. Working as an Ariel Ambassador is honestly the greatest achievement for me because it gives me hope that we will end HIV/AIDS.

Looking back on my story, I realize my resilience came from within but also from those around me, especially my aunt. I will always be grateful to her for teaching me to be strong in the face of adversity. She and many others showed me that HIV doesn’t determine my potential and that I should always respect myself. And when I started to believe this, I slowly began to help myself; resilience comes from within and I am especially grateful to myself for realizing this.

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Tanya’s Call to Action

By Tanyaradzwa K. Vinho

I am a young man from Zimbabwe who plays an active role in bringing youth voices and perspectives to the global fight against HIV/AIDS in my respective country and community. I was selected as one of two members from the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) Zimbabwe to participate in EGPAF’s Committee of African Youth Advisers (CAYA) to create projects that assist youth-led solutions. My breadth of experience working with adolescents and youth living with HIV (AYPLHIV) was one of the reasons I was selected for this role. I previously served as a Community Adolescent Treatment Supporter (CATS) with Africaid-Zvandiri in partnership with EGPAF and assisted hundreds of AYPLHIV by providing support with adherence, linkage to care, psychosocial support, index case finding, peer-to-peer counseling, encouraging disclosure and facilitating support groups.

I also serve as an EGPAF Youth Ambassador where my role is comprised of supporting demand-generation activities. These are aimed at increasing the identification of AYPLHIV through advocacy and championing HIV Testing Services and national sector representative (Treatment, Care, and Support) for Zimbabwe Young People’s Network on Sexual Reproductive Health, HIV and AIDS (YPNSRHHA). This aims to have open dialogues about SRH to prevent new HIV infections and disseminate information to AYP from different sectors. It is also focused on achieving the 90-90-90 goals.

In working with young people in my community and through personal experiences, I have come to acknowledge and recognize the major challenges faced by AYPLHIV. Most AYPLHIV face stigma, discrimination, and late disclosure of their HIV status by caregivers. These challenges are contributing to the defaulting of ART medication, stress, and mental health issues. I wish to advise Community Based Organizations (CBO’s) to continue offering quality adherence, psycho-social support, and education to the communities of HIV/AIDS to mitigate stigma and discrimination. Stakeholders and policymakers should involve AYPLHIV in the designing and implementing of youth-related programs. This will allow policies and strategies to address the needs of AYP in their diversity including the YLHIV.

I have made an impact on the lives of AYPLHIV by focusing on fostering good health and wellbeing. This includes increasing PLHIV’s access to SRH service and reducing HIV related stigma and discrimination through disseminating accurate information of HIV/AIDS in and out of schools. Through advocacy work, I have participated in different technical working groups, strategies review, and validation meetings. I have also worked closely with AIDS Action Committee through YPNSRHHA by sending in the concerns of my peers and prioritizing several issues. Through community-based support, I have been involved in supporting AYPLHIV. I found that their medication adherence and viral load suppression improved a lot where they started coping well with their health and living a positive life. I also empowered my peers to live a positive life and understand that being HIV positive it’s not a death sentence.

I have supported parental-to-child communication with caregivers and helped them understand the benefits of early disclosure, the process of disclosure, and that disclosure to their children can improve adherence. I have experience in conducting sessions on the importance of disclosure in relationships working with my peers to disclose their HIV status before indulging in sexual intercourse as we are fighting the pandemic of HIV and being HIV positive should not limit your dreams or goals in life. It is possible to get married and have children that are HIV negative with your partner.

The peer-peer counseling sessions l conducted with several AYP in denial helped them to accept HIV status and taught them to cope effectively while not being limited to the stigma and discrimination within their communities. The Community Based PSS Groups l led shared different topics that helped transform my peers who were losing hope, suffering from mental health illness, and had no confidence. The PSS sessions contributed to boosted self-esteem, gave hope to the hopeless, and allowed them to smile. Through information sharing sessions, focus group discussions and educational SRH video screening sessions, AYP made informed decisions about living with the future in mind. The majority of AYPLHIV in PSS groups are now empowered with accurate information and can make positive changes. I also conducted substance abuse group discussions and individual counseling sessions with AYPLHIV who have been engaged in substance abuse. After the sessions, there was a positive change where some individuals were reformed and still reforming. This is due to them understanding the implication of drug abuse to health. I have made the voices of AYP stronger and louder by sending in their interest, concerns, and sharing their challenges in the response to Sexual Reproductive Health and HIV/AIDS.

I want to ensure that HIV/AIDS strategies address structural barriers and are designed with young people in mind. I advocate for youth friendly services to ensure inclusivity for all young people to be able to access services without fear. I have gained a deep satisfaction, knowing that I have contributed to making the lives of young people better and have given them a chance to a brighter future. It brings me great joy to know that I have also given a voice to the voiceless, which is needed in our generation and beyond.

During COVID-19 and lockdown period (like in my country), my greatest fear is that we might have an increase of ART defaulter cases of AYPLHIV due to limited follow-up by Community Healthcare Workers. Moreover, I am fearful of limited Sexual Reproductive Health, HIV/AIDS, and other services because they are not related to COVID-19. My call to action during this pandemic period is that relevant stakeholders should have the provision of online counseling to help all AYPLHIV access psycho-social support. I also hope stakeholders utilize available toll-free numbers in our respective countries that address the issues affecting AYP in their diversity as well as keep striving to improve high-quality healthcare services.

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The Dangerous Comorbidity: how should WLWH and mental illness be assisted?

By Lucca Munnik

In 2018, there were 18.8 million women living with HIV (WLWH)[1] with many of them facing issues of mental health, gender-based violence, SRHR, and human rights. Despite evidence suggesting mental health plays a large role in the experiences of WLWH, this issue is either lacking in policy change or rarely addressed in policy guidelines. Understanding the existence of mental illness amongst WLWH can direct healthcare providers towards the types of services and treatment that is needed for WLWH with mental health difficulties[2].

The Impact of HIV on Mental Health

There are various impacts that HIV has on women’s mental health. The common mental illnesses experienced by WLWH are depression and anxiety with symptoms ranging from shame, self-blame to low self-esteem, and insomnia2. Excessive worry is also common and is often related to fretting over future partners or worrying about the reaction from family regarding an HIV-positive status. Further, negative self-talk is common amongst WLWH and mental illness and results in the development of a low self-esteem[3].

Research suggests that many WLWH and mental illness socially withdraw, and this causes them to feel socially isolated[4]. Another impact of HIV on mental health is rejection and this is related to HIV-stigma as well as linked to a lack of disclosure and lower social support24. Moreover, it has been noted that partner rejection, abuse, and abandonment is also a common occurrence amongst this key population where unfaithfulness and being disregarded by romantic partners triggers mental health difficulties, such as low self-esteem and anxiety4. Reproductive health barriers and human rights violations also play a large role in exacerbating mental illness amongst WLWH. Most commonly, WLWH are discouraged from having children, mistreated during pregnancy, or face discriminatory acts, such as forced sterilisation2.

The impacts mentioned above demonstrate that mental health and HIV are very interrelated; they both influence each other in many ways. Due to this, intervention strategies must be explored to assist this key population in the prevention and treatment of the comorbidity.

Interventions

Although it is evident through literature that WLWH often struggle with mental illness, there are still little interventions or healthcare strategies that cater to this specific comorbidity2. There is some research, however, that explored the characteristics needed in healthcare services to treat WLWH and this can also be applied to treating mental illness amongst this key population. Treatment can be addressed in three ways; through psychological support, challenging stigma, and via the community.

Psychological Support

Counseling or psychosocial support is a way of providing support for WLWH and mental illness. Types of counseling include; Cognitive Behavioural Therapy, Only-Women Support Groups, and Problem-Solving Therapy2.

It is recommended that these counseling strategies should be integrated into other HIV interventions, and should be affordable, holistic, and accessible. Moreover, HIV and mental health services should collaborate so that mental health specialists can offer services in the HIV setting[5]. There is also a need for screening for mental illness amongst WLWH and this should be included in the collaborative care approach4. Finally, the healthcare setting should involve the treatment of other issues or comorbidities, such as substance abuse2.

Interventions at home, including individual counseling, has been recommended for WLWH who cannot attend the clinic due to sickness or due to poverty in low-income countries4. Further, it is suggested that women are “met where they are”3 where support is provided to WLWH by meeting her needs and doing so without judgment.

HIV-related stigma is an issue seen in healthcare settings, even amongst healthcare providers. Compounded with HIV-related stigma, WLWH are also troubled by the stigma of mental illness. Therefore, there is a massive need to approach this issue to reduce discrimination in both the healthcare and communal setting.

Challenging Stigma

In order to challenge and reduce stigma and discrimination, educational interventions are required. Mental health promotion intervention is needed to promote gender equity (as this will assist with reducing GBV too)4. It will also help foster social support from the community which is needed to uplift WLWH and their families4.

At a healthcare level, service providers should be trained to not discriminate against HIV as well as their comorbid mental illnesses. This should be done through culture – illness- and gender-sensitive training which should assist service providers in understanding the various backgrounds from which WLWH come. Moreover, this will reduce the stigmatized assumptions service providers often have when treating WLWH3.

The Role of Community

The community plays a large role in HIV treatment where family and partners are often included in the interventions. Most WLWH have families and they often make decisions about their house according to their family unit3. This is seen in services such as family planning and is the main indicator of the importance of SRHR services. It is recommended that health services should provide for WLWH and their families, such as through supervised playroom for children, pregnancy planning, family therapies, and counseling for partners3.

When dealing with mental illness, it is important to ensure the community is involved.  One study suggested that community caregivers and lay counselors provide psychosocial interventions and that group-based therapy is important when fostering support and resilience4. This would create a support system as well as build on strengthening communal support4.

WLWH and mental illness struggle with various issues, but among many of them, lies the issue of treatment and prevention. By improving and discovering ways to ensure psychosocial support, end stigma, and empower the community, this will aid us in treating and preventing the harsh reality of both HIV and mental illness.

 

[1] UNAIDS, 2019

[2] Petersen, I., Bhana, A., Fairall, L., Selohilwe, O., Kathree, T., Baron, E., Rathod, S. and Lund, C., 2019. Evaluation of a collaborative care model for integrated primary care of common mental disorders comorbid with chronic conditions in South Africa. BMC Psychiatry, 19(1).

[3] Orza, L., Bewley, S., Logie, C., Crone, E., Moroz, S., Strachan, S., Vazquez, M. and Welbourn, A., 2015. How does living with HIV impact on women’s mental health? Voices from a global survey. Journal of the International AIDS Society, 18, p.20289.

[4] Carter, A., Bourgeois, S., O’Brien, N., Abelsohn, K., Tharao, W., Greene, S., Margolese, S., Kaida, A., Sanchez, M., Palmer, A., Cescon, A., de Pokomandy, A. and Loutfy, M., 2013. Women-specific HIV/AIDS services: identifying and defining the components of holistic service delivery for women living with HIV/AIDS. Journal of the International AIDS Society, 16(1), p.17433.

[5] Collins, P., Holman, A., Freeman, M. and Patel, V., 2006. What is the relevance of mental health to HIV/AIDS care and treatment programs in developing countries? A systematic review. AIDS, 20(12), pp.1571-1582.

 

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Ismail’s Story

By Ismail Harerimana

 

Eleven years ago, I discovered that I was HIV positive after I was disclosed to by one of my fellow adolescents. I had thought I was taking medication for my kidneys because that is what my parents had told me. At the age of 15, I knew little about HIV & AIDS except for the information I received from the presidential initiative of AIDS strategy for communication to youth (PIASCY). This is where various speakers would attend schools to teach learners about HIV & AIDS, treatment, prevention and HIV transmission.

Due to my little knowledge about HIV, the truth about my status was difficult for me to process and so life became very hard for me. I did not disclose my status to my friends at school. I would take my medication each day at 7am while I was still on AZT/3TC/NVP. When people asked me why I was taking medication, I would tell them that I’m taking it for my kidneys and eyes, and they believed this. My Head School Principal also did not know that I was HIV positive, so this made getting permission to leave school to get my ART medication refills difficult. I would often leave school without permission and because of this, I would face school punishment nearly every month. At this point, I thought about dropping out of school because it had become too much for me to handle and my academics were also not spared. Because I had lost hope, I started performing poorly and coupled with this was the thought that I was going to die soon. Instead of revising during school classes, I would think about what I would tell God upon my death and how I was going to miss my friends. At the end of every school term, I would bid farewell to them because I thought I would not return the following term. I used to ask my friends to attend my burial in case they heard I died. To address their suspicions, I would tell them that my family had many misfortunes. I also had no future plans, especially not with partnerships, because I feared spreading HIV to other people. Despite all this and my fears, I persisted and completed my secondary education.

As time went along, I eventually stopped pitying myself and instead became open about my status. It was during this time that I realized that I could also use my status to encourage fellow adolescents and young people to live positively. I started a group to bring young positives together to fight AIDS. This group is called Kabale Young Positives (KYP) and it involves 30 HIV-positive youth, all of whom have accepted their HIV status. I lead this group by visiting, supporting and counselling many adolescent and young people who are not adhering to their medication.

It was as if one day I found my voice and used it to empower my peers which is also seen in the various roles to which I commit. I have completed short courses in HIV counselling, and I am now volunteering as a youth peer at Kabale Regional Referral Hospital. I am an Ariel Ambassador supporting EGPAF’s Ariel clinics in all their supported districts in Uganda as well as a national Young People and Adolescent Peer Supporter (YAPS) Trainer. I was also selected as one of the Uganda members of a Committee of African Youth Advisors.

When comparing my lived experience of HIV to what I learnt about HIV in school awareness campaigns, there is one major aspect that I notice, and it is something I wish to advise to policymakers. It is essential to change provoking messaging about HIV awareness from “AIDS KILLS; AIDS HAS NO CURE; THE ENDING RESULT FOR SOMEONE WITH HIV IS DEATH” to something more positive and accurate. I question how this kind of messaging makes a school learner, who has just been fully disclosed to, feel. Similar to how I felt, I think it would make the school learner not adhere to their ARVs and think life is pointless. This negative dialogue needs to be changed to focus on more positive and less stigmatizing language because this does not motivate youth to stay adherent but rather has a profound impact on mental health. I believe that positive encouragement and making people aware that they can live healthy and happy lives despite being HIV positive is very important; it would help youth living with HIV as it would have helped me.

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The Role of Social Media in the Fight against HIV & AIDS

The Role of Social Media in the Fight against HIV & AIDS  

By Gift Banda

 

On the 28th of January 2011, the former President of Egypt, Hosni Mubarak, shut off the Internet across the entire country. This unprecedented blackout lasted for five days. Mubarak’s decision came after days of protests by many Egyptians who were mostly gathered in Cairo’s Tahrir Square (or “Liberation Square”). Most protestors coordinated via social media platforms and in the weeks leading up to the protests, Egyptians created 32,000 Facebook Groups and 14,000 Facebook Pages. Mubarak’s desperate attempt to halt the flow of communication further invigorated protests. Following the five-day blackout, over one million Egyptians joined demonstrations across the country—up to a tenfold increase. When the Internet was finally restored, Facebook had its highest-ever number of users from Egypt. After 18 days of protest, President Mubarak resigned from office, ending his 30 years of authoritarian rule. In the wake of the blackout, President Barack Obama stated, “Once more, we’ve seen the incredible potential for technology to empower citizens and the dignity of those who stand up for a better future.”

In this Tahrir Square example, social media not only served as a vital channel for communication, but also brought individual citizens a sense of self-empowerment through the capacity to express, discuss, participate, and assemble.

 

Social Media as a Tool

In this article, social media is defined as platforms that connect people online based on a common topic or goal. This definition focuses on the connection between people and the sharing of information through text, photos, or videos. It is a known fact that the daily users of social media are young people[1]. The popularity of social is because it is inexpensive, accessible, and easy to use. Due to young people often being dependent on the financial assistance of their family, they are also likely to use social media more frequently[2].

Social media has the potential for young people to connect, express, learn, engage, and act with the simple push of a button; the power of social media is undeniable and cannot be ignored. With this tremendous power that resides in social media, it can be used as a tool in global health initiatives, especially for the fight against HIV. The social interaction that social media offers can be mainstreamed with other health-related initiatives to offer double benefits to the people. HIV prevention is a widely discussed topic and we often ignore that HIV prevention relates to information provision[3].

 

Behaviour Appropriate

In behavioral change models, information provision is highly emphasized. For a person to change his or her behaviors that are risky, it is of paramount importance that such behavioral modifications must be parallel with relevant information for proper decision-making. Effective health information delivery must be engaging and must be in line with the behaviors of the target population. As mentioned earlier, almost 80% of young people across the globe use social media for their daily communication endeavors[4]. Therefore, integrating HIV prevention messages on social media will likely meet this 80% of young people who use social media.

It is also important that we consider using platforms or strategies that are appropriate to young people and so they can easily understand the message. Young people are sensitive to what is around them and so by using platforms that are unacceptable or inappropriate to youth, it may not be enough in the fight against HIV & AIDS[5].

 

Health Promotion and Stigma

The benefits of social media are also used in health promotion. As defined by the Ottawa charter for health promotion, health promotion is the process of enabling people to increase their control and improvement of health[6]. Social media is engaging as it allows young people to state their views on a particular topic of discussion and this makes them develop a sense of ownership towards the message. This brings out an empowerment element that is very vital in health-related messages[7]. Social media can act as a platform for sharing information that will help individuals and communities to combat HIV-related stigma. This is because it allows people to access information about the importance of accepting PLHIV and the knowledge that being HIV positive does not warrant a defined difference to those who are negative.

As it was the case in the Tahrir Square scenario, social media has the greatest potential of making serious modification in our societies, especially in the fight against HIV and the stigma that PLHIV face daily. If social media can be innovatively utilized by individuals and organizations, it will be able to meet a huge number of young people across the globe.

 

 

[1] A. M Kaplan and M. Haenlein.  “Users of the world, unite! The challenges and opportunities of Social Media”. (Bus Horiz, 2014)
[2] ibid
[3] S. S Bull, et al. Social Media–Delivered Sexual Health Intervention: A Cluster Randomized Controlled Trial. (PubMed: 23079168)
[4] L. Yonker, et al. “Friending teens: a systematic review of social media in adolescent and young adult health care. (J Med Internet Res. PubMed: 25560751)
[5] J Rothwell. “In the company of others: An introduction to social psychology” (New York: McGraw-Hill, 1999)
[6] S. Ottawa Charter (1986). For Health Promotion
[7] http://www.tandfonline.com/doi/pdf/10.1080/17290 376.2011.9724996 (uploaded: September 2011. Accessed March 2020)

 

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The Stories of Young Resilient Women

By Tambudzai Muzenda

While working with youth in the SRHR and HIV/AIDS sector, I have realized that most youth or adolescents either affected or living with HIV/AIDS share a rich bond that is not often considered in the HIV community response. Despite youth coming from diverse indigenous groups, they share common values and beliefs that facilitate healing, positive meaning, and confidence in the future of their health. While adherence clubs are crucial in positive living, there is still a gap in coping methods and thinking beyond the talk about treatment, healthy life, and the possible future. This is especially seen in times of stress and processing the loss and grief.

While in South Africa, the present-day burden of HIV remains that of women and girls, more youth across the country are bearing the weight of this inheritance; a lethal legacy that has left devastating effects on their loved ones, teachers, and role models. However, there is still hope.

When focusing on young women, it is without a doubt that many feel empowered and have found means to pave a positive path. Through interviews and open discussions, young women highlighted how accepting their HIV status is powerful enough to make a difference in their lives. And despite the challenges they face, such as leadership conflicts that often undermine their voices and lessons, they still recite their stories of hope, resilience, and opportunity.

 

Gugu’s Story

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:

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 by Gugu was a need for education at a 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 the voice of the voiceless. 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 more about those who still find it difficult to accept. That’s why I fight against stigma and discrimination towards PLHIV.

 

Lekoane’s Story

Similar to Gugu, young women in South Africa find resilience is key to positive living and planning a future beyond their HIV status. Lekoane, a 25-year-old woman living with HIV, highlights that her story is one of self-growth despite the beginning being difficult. The establishment of a support system that helped her grow was crucial and has kept her going – she emphasizes support from her partner, who is a pillar in her life and constantly seeking inner peace and mentoring to grow. For some, the capability to do more than your status is strength in itself and a realization that more is possible.

Lekoane’s story is one that is shared by many girls and women who have found the source of power from within. She writes:

Resilience has 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 actually 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, and 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.

Then I have my mentors who support me in other areas of my life. And my role models that I look up and they inspire me whether they are HIV Positive and HIV Negative. So I can say that I am surrounded by a lot of positivity and inspiration. And it is by choice for the sake of my peace of mind.  I always drive myself to the point of sanity because I know, and I am fully aware that I have other young people who look up to me out there. I love writing, and I have an active Facebook page where I always write motivational and inspiring messages. I also share some health information so that people stay informed. I am not JUST an ordinary young woman who is living with HIV. I can recognize myself as a young person who is hungry to bring change to my community; I am that very important tool who is not only an agent of change but the voice of the

voiceless. How we program our minds toward HIV will be the exact results of how our lifestyles will turn out to be. So if you get tested, and the results come back positive, make a choice of being positively positive or negatively positive!  I believe that nothing beats recognition.

Both Gugu and Lekoane’s stories, along with others in South Africa, underscore an urgent need to work with young people to have similar outlooks on effective prevention, treatment and care strategies and support beyond treatment adherence. These stories are compelling and call on adults everywhere to demonstrate their willingness to confront difficult issues where young people, especially young women, are rallying to support each other.

Sibongile Tshabalala, National Chairperson of the Treatment Action Campaign (TAC), acknowledges the revolutionary power of young women’s resilience as an area to contribute and create change when saying:

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 females, 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.

And despite the small numbers of young women engaged, the difference they make is the greatest opportunity to defeat HIV/AIDS.

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The Truth about Living with HIV

By Adelaide Hamese

I grew up in a country where if you are living with HIV/AIDS, you are considered to be dying. It is a country where PLHIV don’t disclose their status in fear of being the laughingstock of the community and where they are considered disgraceful to the family. In other words, speaking about HIV is taboo. So, one would ask me how I did it at such a young age?

Here is how the story goes…

My parents found out I am HIV positive when I was five years of age. This was after I became ill and admitted to hospital where I was diagnosed with meningitis which nearly took my life. At that point, I was too young to understand what was going on. I started taking ARVs at age five and would go for check-ups every month. This obviously meant I was missing school every month and because I did not understand what was going on, I would ask my mom why I go to hospital every month and she would tell me I have a teeth problem. I honestly believed her although no one ever checked my teeth.

When I was in Grade 5, a friend of mine whose parents knew my mom, told everyone at school that I am HIV positive. The next day when I went to school, my other friend told me what had been said. At that time, this was news to my ears and so I said that there was no such thing with confidence. I thought to myself; how can a girl with such curves be HIV positive? And as for my skin? It is popping and clear. I thought this because where I grew up, if someone is slim with pimples, we think they are HIV positive. That day, I got home and asked my aunt if what I had heard at school was true. She didn’t answer and instead, told my mom, whose reaction confirmed everything for me.

That’s how I discovered I am HIV positive and nothing was ever the same since that day. I started battling with myself and the people around me. I sometimes felt worthless, useless, ugly and I never understood why God would give me HIV at such a young age. I had thousands of unanswerable questions to the universe. I bottled so many emotions inside for a very long time. This then led to a battle with suicidal thoughts, anxiety and depression for three years. During this period of my breakdown, I learnt so much about the virus and about myself which helped me become stronger. Although I felt broken, I managed to convince myself that I am bigger than HIV and reminded myself that my story is for people to hear. The belief that kept me going was, if not me, then who?

At some point I decided to share my story with my close friends, and I told them how I managed to survive. Not all of them responded the same way and I lost friends in the process. Despite this I kept going, owning and telling my story which made me more resilient to HIV-related stigma and discrimination. The stigma and fear that I faced made me wake up one day and say: I am ready for the world to know about my journey with HIV.I realized that living with HIV is not a doorstep into heaven, but it doesn’t make you less of a person. Living with HIV does not define your life journey so do not let it define you. Instead, you have to define it.

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HIV Disclosure: Benefits, Challenges and Behaviors

By Austin Okumu

There continues to be various issues associated with HIV & AIDS that need to be explored in-depth. One of these issues concerns HIV disclosure, which refers to when someone living with HIV tells another person their HIV status. Although this comes with a sense of relief and potential support, it also bears many challenges – ones that can affect self-esteem and cause fear. As a result of the negative part of status disclosure, people living with HIV (PLHIV) can be reluctant to disclosing their status[1]. Moreover, HIV disclosure can also be challenging when someone enters into a serodiscordant relationship. This refers to a relationship that involves a person who is HIV positive and another person who is HIV negative[2]. This article will explore why specifically youth are not disclosing their HIV status as well as the challenges and benefits to status disclosure. 

Why is Youth Not Disclosing?

When addressing local and global HIV prevention efforts, understanding serostatus disclosure to sexual partners also needs to be included. This is because a large number of children living with HIV are entering adolescence and becoming sexually active[1]. Moreover, young people are engaging in sex, including condomless sex, with same-age peers who are living with HIV and this can be problematic if there has been no act of HIV disclosure. However, disclosure to PLHIV, can also be risky, and carries many threats of rejection, humiliation, and even sometimes violence. The fear of potentially adverse outcomes, such as rejection and stigma, can amplify transmission rates and this is seen in the fact that many adolescents and young people are choosing not to disclose their status despite continuing to engage in sexual activity[2],[3].

Numerous factors are associated with lack of disclosure which is demonstrated in literature. Lack of disclosure to partners has consistently been affected by sexual activity. For instance, YPLHIV are less likely to disclose to casual sex partners[4] whereas regular sexual activity amongst long-term couples acts as a reason for HIV discordance. However, inherent resistance to HIV in some individuals may be another reason for HIV discordance[5].

[1] Melvin D, Donaghy S. (2014) Talking to children about HIV in healthcare settings.

[2] HIV in Young People Network (HYPNET), Children’s HIV Association CHIVA / British Association of Sexual Health and HIV (BASSH) / British HIV Association BHIVA (2011) Guidance on the management of sexual and reproductive Health of adolescents with HIV.

[3] Corrigan, P., Kosyluk, K. and Rüsch, N. (2013). Reducing Self-Stigma by Coming Out Proud. American Journal of Public Health, 103(5), pp.794-800.

[4] Evangeli M, Wroe L. (2016) HIV disclosure anxiety: A systematic review and theoretical synthesis.

[5] Pettifor, A., Bekker, L., Hosek, S., DiClemente, R., Rosenberg, M., Bull, S., Allison, S., Delany-Moretlwe, S., Kapogiannis, B. and Cowan, F. (2013). Preventing HIV Among Young People. JAIDS Journal of Acquired Immune Deficiency Syndromes, 63, pp.S155-S160.

Challenges and Benefits of Disclosing HIV Status

In deciding as to whether or not to disclose, there is a considerable amount of evidence demonstrating the barriers that individuals experience, ones that are often fraught with emotional challenges. Currently, literature suggests that the majority of children and youth were only disclosed to during a health facility consultation where they were told the names of the drugs they were to take or were currently taking[1]. Due to this, it is recommended that children and young people are told their serostatus early so that they are prepared for the outcome. HIV disclosure is also influenced by stigma. This is because disclosing an HIV status might increase the likelihood of being alienated by peers and so it may also carry greater risks for many young people which to them, could outweigh any perceived benefits and overall gains[2]. HIV-related stigma, by its very definition, accentuates disapproval and can have negative effects on self-esteem and social support[3]. Despite the negatives, there remains benefits to status disclosure. Some of these include a sense of relief, fostering closeness to loved ones and a feeling of empowerment. Important benefits that should be noted is that by disclosing, YPLHIV can receive effective treatment and have a higher chance of being supported by loved ones and partners1.

Current literature on the topic of young people’s sexual health and behaviors explores the various factors that impact their lives as well as their relationships. It is suggested that disclosure is not a one-off event and is rather a sequential process that requires enabling opportunities for individuals to access appropriate physical and psychological support[4] which is a fundamental part of secondary prevention. In understanding the reasons why young people are reluctant to share their status throughout the disclosure journey it is important to provide adequate support. This may create interventions that aim to support and facilitate young people through the disclosure process[5]. Moreover, it is also important to raise awareness of the benefits of HIV disclosure because this can not only make the disclosure process easier but also can break the stigma attached to disclosing1.

[1]Fernet, M., Wong, K., Richard, M., Otis, J., Lévy, J., Lapointe, N., Samson, J., Morin, G., Thériault, J. and Trottier, G. (2011). Romantic relationships and sexual activities of the first generation of youth living with HIV since birth. AIDS Care, 23(4), pp.393-400.

[2] Hogwood J, Campbell T, Butler S. (2012) I wish I could tell you but I can’t: Adolescents with perinatally acquired HIV and their dilemmas around self-disclosure. Clinical Child Psychology and Psychiatry 18: 44–60.

[3] Wiener, L., Battles, H., Ryder, C. and Pao, M. (2006). Psychotropic Medication Use in Human Immunodeficiency Virus-Infected Youth Receiving Treatment at a Single Institution. Journal of Child and Adolescent Psychopharmacology, 16(6), pp.747-753.

[4] Conserve, D., Groves, A. and Maman, S. (2015). Effectiveness of Interventions Promoting HIV Serostatus Disclosure to Sexual Partners: A Systematic Review. AIDS and Behavior, 19(10), pp.1763-1772.

[5] Ravikumar, B. and Balakrishna, P. (2013). Discordant HIV couple: Analysis of the possible contributing factors. Indian Journal of Dermatology, 58(5), p.405.

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Precious’ Story

By Precious Kaniki

I found out that I was HIV positive twelve years ago and back then, it felt as if all my dreams were shattered. The only thing that came to my mind was to commit suicide which I almost managed to do by not taking my ARVs for seven years – I only took them when I felt like taking them. I withdrew from family and friends and I stopped studying while waiting upon death. I lost all my self-confidence and displayed a fake smile to the world, pretending to be okay when I wasn’t. I lost interest in everything. At one point, I remember when I was told I had a CD4 of 19 – I was the happiest person knowing I only remained with 18 counts to die. At the same time, I was failing treatment and so I was transferred to Didanosine Stavudine Abacavir, which meant taking twice the dosage of medication I was previously taking. This made me feel hopeless.

I enrolled in college where I was doing a diploma in Social Work and in my final academic year, I developed stomach pains. Within two months, I got sick to the point where I wasn’t even drinking water. I was 23 years old and I weighed 37kg (81lbs). It was in that moment where I was able to reflect on all the seven years since my diagnosis and I concluded that I had been difficult; full of anger and tears, and I had even attempted suicide. I reflected on how I hated myself for all those 7 years. After this, I remember going to the clinic and telling my doctor to do what they had to do, and I would do the same. It felt similar to when I had first started treatment. I was angry at myself for all the opportunity I missed because I didn’t accept myself. I could have been an electrical engineer. I could have made my parents happy by passing with distinction during high school. Regardless of that, all I wanted was to make the most of my life, to be happy and help other adolescents and youth who share a similar experience to mine.

When I was volunteering at the clinic in 2015, I saw a 19-year-old girl who had tested positive for HIV, crying while not caring that people were watching. I saw this girl in me, and I knew that if no one would be there for her, she would end up thinking life is cruel and bad. From then on, I started getting numbers from youth on treatment and told them that I am also HIV positive. I created a WhatsApp group for young people living with HIV and this group has been my true source of courage. It is a group with which I relate and where I’m able to share my struggles without being judged. I have come to know many young people striving every day to live their lives to the fullest despite their challenges with peer pressure and disclosure to potential partners.

I give thanks to everyone who was there and has always been there: family, friends and my mentor who helped me through recovery and towards accepting my status. Today, I am a co-founder of the Phenomenal Youths Association which focuses on the well-being of young people living with HIV after they start treatment, including their mental well-being. I advocate for good treatment adherence, self-acceptance, self-love and for undetectable = untransmittable.

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Her Story

By Helen Lonn

Pain, frustration and uncertainty sank deep into Josephine’s bones the day she was declared HIV positive. Her pain could not be explained merely by words. In that moment, she lost the true meaning to life – her personality, self-esteem and future shattered. 

“I thought I was having a bad dream, yet it is gradually becoming a reality. Oh God, when will I wake up from this bad dream? Who will save me? The stars seem to have disappeared from the sky, the night seems to be too long, and the blue skies seem to have turned red. Even though it seems I am living, I feel the cold hands of death deep in my bones,” decries Josephine.
While I watched the hot tears run down her cheeks, she concluded, “I know this is witchcraft”.
I gave her my arms to undergo catharsis.

Some days later, she accepted to begin her treatment for HIV, and I was relieved. By the next appointment, she had changed her mind and during my home visit, she said, “I went for a crusade and a ‘Man of God’ declared me healed so I am not in for any drugs again.”
This is when I knew that I must change my strategy; I engaged her in an empathic relationship while she walked through the ‘valley of depression’ and denial. A long-term empathic relationship became imperative and through this, she was able to disclose her status to her support system. Together, we lifted the burden off the young woman’s shoulders, sparking the flicker of a smile on her face and helping her breathe new fire into the fading embers of what was once a smoldering dream. We helped change the course of another human’s day, week and entire life as she embarked on chronic treatment.

Today, she stands as an advocate for many who still live with uncertainty and who have lost hope due to their HIV status. Her life has improved to such an extent that she has even attained viral suppression and now, she stands to encourage many others to be tested.

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