HIV AND WOMEN: STORIES THAT INSPIRE

Globally, women account for over 50% of all people living with HIV. This is why it's important to amplify women’s voices and ensure they have access to care, treatment and prevention strategies.

However, women and their experiences of HIV are often overlooked. At ViiV Healthcare, we want to change this. We aim to promote understanding and foster an equitable society by sharing HIV stories from women around the world.

Throughout this page, you’ll hear from HIV-positive women whose stories can inspire and empower others to live authentic and healthy lives. By sharing their HIV stories, women can help change the narrative, break down the stigma, and help build a world where everyone is treated with dignity and respect regardless of their HIV status.1

But first, listen to Dr. Nneka Nwokolo, Head of Global Patient Engagement, being interviewed in Australia about how important it is for women to be able to make their own choices when it comes to living with HIV.

WOMEN DEALING WITH AN HIV DIAGNOSIS

  • About women dealing with an HIV diagnosis

    HIV stigma still persists. Therefore, dealing with an HIV diagnosis or accessing HIV care can be challenging for many women. Experiencing discrimination can make some women reluctant to access treatment, talk about their status, or implement prevention strategies.

    Women living with HIV can also experience internalised stigma, or self-stigma.2 This includes feelings of shame, guilt, or blaming oneself for having HIV.2

    When they share their HIV stories, women living with HIV help break down sigma and help other women feel supported and empowered. Breaking down stigma helps to ensure access to the right care and prevent further transmissions.

    Read on to find out how women like Xiana have dealt with an HIV diagnosis despite such challenges.

Xiana’s story

Xiana is an HIV-positive woman who shares her story following an HIV diagnosis. As she explains in the video, her journey may have started with internal stigma and fear, but with support from friends and healthcare providers, Xiana is now proactive in her HIV care. Her levels of HIV are undetectable as a result, and undetectable means untransmittable (U=U).

Taking ownership of your HIV status can help overcome internal stigma and negative feelings.2 For other HIV-positive women, stories like Xiana’s can be an inspiration and help them realise that happy, fulfilling lives are perfectly possible after an HIV diagnosis.

HIV AND WOMEN’S STORIES: MOTHERS LIVING WITH HIV

  • About HIV and motherhood

    Mothers living with HIV face additional challenges as a result of their HIV status. These challenges can significantly affect their mental health.

    Many women are already at a higher risk of mental health issues during pregnancy and after giving birth. Depression, anxiety, and post-partum psychosis are only some of the mental health problems that can occur during pregnancy or after birth.3

    Additionally, mothers with HIV may sometimes face stigma from some healthcare providers.3 They might struggle with having to disclose their HIV status (as it may affect the baby) and experience a lot of stress and worry about potentially transmitting HIV to their children.3 Finally, looking after your own health when you have HIV can be more challenging when you are a mother — caring for your child and caring for yourself at the same time can be a balancing act.3

    These additional stressors may all affect the mental health of mothers with HIV and their adherence to their HIV treatment.3 Studies have found higher rates of depression after giving birth among women with HIV than women without HIV.3 They have also found these stressors cause mothers living with HIV to miss their medication and doctor’s appointments.3

    However, many women with HIV have found inner strength and resilience, and with the support of their friends, loved ones, and their community, have taken control of their HIV status.4 This is the story of Helen, a single mother who first found out she was HIV-positive when she experienced symptoms in her feet.

Helen’s story

After her HIV diagnosis, Helen navigated some difficult personal challenges. A single mother whose husband had died and who had to separate from her child, Helen turned to her friends and healthcare providers for help. She has since taken control of her diagnosis and treatment and refuses to let HIV define her.

HIV stories from women like Helen will hopefully help other mothers take ownership of their condition, take treatment consistently, and live long, fulfilling lives where they can watch their children grow.

Winnie’s story

Winnie works as a Community Mentor Mother for mothers2mothers (m2m) in Uganda. She is living with HIV and has recently given birth to an HIV-negative baby due to the support and treatment advice she received from other m2m mentor mothers.

As a Community Mentor Mother, Winnie teaches other HIV-positive expectant mothers how to live a happy, healthy life alongside their baby.

For mothers living with HIV, women’s stories like the one shared by Winnie can hopefully bring optimism and inspire resilience.

PREGNANT AND HIV-POSITIVE: STORIES FROM AROUND THE WORLD

  • About being pregnant and HIV-positive

    Living with HIV during pregnancy can pose significant challenges for women. For example, researchers interviewed HIV-positive pregnant women in Uganda and found that they experience public ridicule and social rejection as a result of their HIV status.4 This HIV stigma is due to misconceptions and myths, like the wrong notion that an HIV-positive mother will absolutely pass on the virus to her child or the myth that getting an HIV diagnosis is a death sentence.4

    This study and other similar ones have collected stories of being pregnant and HIV-positive from the women themselves.2,4 In them, the women highlight the importance of support and love from their families and partners.4

    The study also found that pregnant women living with HIV are shunned by family, peers, and the wider community.4 This makes it incredibly difficult to disclose one’s HIV status and have access to HIV testing and treatment.4 Furthermore, the isolation caused by social rejection can cause low self-esteem, depression, and suicide.4

    In addition to depression, HIV-related stigma among pregnant women can cause poor adherence to treatment and therefore higher viral load and higher risk of mother-to-child transmission of HIV.4 It can also make a woman worry about her health and that of her baby, make her more vulnerable to violence, impact her relationships, her decision to get married or remarried, or the decision to have more children.2,4

Being pregnant and HIV positive: Victoria’s story

Victoria was diagnosed with HIV at her 9-week ultrasound scan. She is now an active social media presence, and her mission is to debunk myths and misconceptions about living with HIV.

Victoria owns her HIV status, doesn’t listen to negative judgements, and wants other mums with HIV to do the same. As part of her involvement in ViiV’s HIV in View campaign, she wants people to keep talking about HIV and be vocal about the virus without letting it define them.

HIV STORIES: WOMEN DIAGNOSED WITH HIV IN CHILDHOOD

  • About HIV and young girls

    Many women will have received an HIV diagnosis early in childhood when they were young girls. Girls (and boys) who discover their HIV diagnosis at such a young age can face significant difficulty, especially from a social and psychological perspective.5

    Parents often avoid telling young girls that they have the virus, either to protect them or due to internalised feelings of guilt.5 This may not only stand in the way of getting the right treatment, but the secrecy around a child’s HIV status can seriously interfere with their emotional and social development.5 Finally, an HIV diagnosis can make it that much harder for a young child to make friends and ‘fit in’.5

    Children need to be emotionally supported by their parents and caregivers when they are told about their HIV status.6 An early HIV diagnosis can continue to have a massive impact well into adulthood, so receiving support throughout puberty and adolescence is key.5,6

    Young women like Doreen have grown into strong, happy adults after being diagnosed with HIV since birth.

Doreen’s story

Doreen doesn’t want ‘a tiny virus’ like HIV to define her. So, she uses the phrase “I am a beautiful story” to describe that she is so much more than her HIV diagnosis.

Doreen was born with HIV. She has aged and grown up with the virus.
As part of the HIV In View campaign, Doreen’s mission is to challenge internal stigma and societal stigma and to help people heal and avoid self-sabotage.

HIV stories from women like Doreen remind everyone that HIV doesn’t stand in the way of achieving your ambitions, dreams, and aspirations. You can live a full, happy life after an HIV diagnosis.

TEENAGE WOMEN LIVING WITH HIV

  • About HIV and adolescence

    Some women discover their HIV diagnosis as adolescents. This comes with its own unique challenges, as during puberty and adolescence, young people tend to become interested in sex.5 Adolescence is also a time when friendships are at their most important.5

    It’s key that adolescent girls know their HIV status when they are a teenager and if their status is positive, that they receive support so they can take full ownership of their HIV and make informed decisions about their lives.5

    Managing your health, talking about your HIV status to your friends and facing potential stigma, all while becoming independent (and for some, also sexually active) can be a lot to handle for a young teenage girl.5 This is why social support is so important, and the HIV stories of women below show how this social support can vastly improve the lives of teens living with HIV.

Zulaika’s story

At only 19 years old, Zulaika helps other teens get tested for HIV, combat HIV stigma, and adhere to their treatment.
Zulaika herself is living with HIV and working as a Young Adolescent Peer with The AIDS Support Organisation (TASO). TASO helps bridge the gap between health facilities and the community to increase young people’s access to HIV prevention and care services, such as self-testing, treatment, and psychosocial support in Uganda.

Loy’s story

Loy is a 15-year-old mum living with HIV. At just 15 years of age, Loy mentors other parents in her role as Mentor Mother for Community Health Alliance Uganda (CHAU). CHAU has helped Loy and many other young women living with HIV to become financially independent by creating small businesses and helping them save money for their daily necessities. Loy helps young women in Uganda avoid transactional sex and empowers them financially. She also supports young mothers and refers them to health services when needed.

Luvo’s story

Luvo is an inspiring HIV activist. She is a peer counsellor and advocate for Positive Action's partner - HER Voice Fund. Luvo explores what more can be done to empower young women living with HIV to overcome the challenges that impact their health in South Africa. As an HIV activist, she wants to know what tools young adolescent girls need to combat stigma and be treated fairly in a just, equitable society. She thinks that, by connecting and sharing each other’s HIV stories, women can feel empowered to talk about their HIV status and become an integral part of society. Read more about how Luvo empowers young women to have a meaningful voice when it comes to decisions impacting their health and ultimately, their lives.

HIV STORIES: TRANSGENDER WOMEN LIVING WITH HIV

  • About the challenges of transgender women living with HIV

    The challenges faced by transgender women living with HIV are particularly complex. Women of transgender experience may face a double stigma: one due to their gender identity and how transphobes perceive it, and one due to their HIV status.7 Due to transphobia in healthcare, transgender women living with HIV have less access to HIV treatments and healthcare.7 Experiencing this double stigma has been linked with higher rates of depression amongst transgender women.7

    Transgender women living with HIV may also experience higher rates of anxiety, suicidal ideation, and other mental health disorders due to the intersection of gender dysphoria, HIV-related stressors, and marginalisation.8,9

    For example, many women who cannot find gender-affirming care may turn to street hormones, which may raise the risk of HIV transmission through syringes.8 The double stigma that they then experience may restrict their access to HIV care or mental health support, perpetuating a spiral of inequity.8 Lack of access to gender-affirming care and hormones negatively affects the health and quality of life of transgender women.9

    Finally, many transgender women living with HIV may not have supportive networks and acceptance within their families, communities, and society.9 These can all negatively impact their mental health and overall quality of life.9

HIV-positive transgender women: Rebecca’s story

Rebecca Tallon de Havilland is a Trans Program Coordinator at HIV Ireland and partner in our HIV In View campaign. Rebecca, who is also a peer support worker and CEO at Project Bootcamp, understands the importance of creating support networks for transgender women living with HIV.

As a trans woman living with HIV for over 30 years, Rebecca has experienced significant stigma throughout her life. In her words, she experienced a “double whammy:” HIV stigma and transphobic attitudes. She believes that sharing her story and her truths with people worldwide will empower others to live their colourful lives, at any age. To eradicate HIV, no person can be left behind, and Rebecca would like to challenge the view that HIV affects only one type of person.

Planning for your HIV appointments
Women living with HIV sitting in the sun at the beach laughing

References:

  1. National Aids Trust (NAT), Positive voices survey, Changing Perceptions: Talking about HIV and attitudes. Accessed 15/11/2023, Available at: https://www.nat.org.uk/sites/default/files/publications/web_PV_Changing%20Perceptions-Stigma-report.pdf
  2. Rael CT, Carballo-Diéguez A, Norton R, et al. Identifying Strategies to Cope with HIV-Related Stigma in a Group of Women Living with HIV/AIDS in the Dominican Republic: A Qualitative Study. AIDS Behav. 2017;21(9):2589-2599. doi:10.1007/s10461-016-1654-9
  3. Waldron EM, Burnett-Zeigler I, Wee V, et al. Mental Health in Women Living With HIV: The Unique and Unmet Needs. J Int Assoc Provid AIDS Care. 2021;20:2325958220985665. doi:10.1177/2325958220985665
  4. Jolle J, Kabunga A, Okello TO, et al. HIV-related stigma experiences and coping strategies among pregnant women in rural Uganda: A qualitative descriptive study. PLoS One. 2022;17(10):e0272931. Published 2022 Oct 7. doi:10.1371/journal.pone.0272931
  5. Vranda MN, Mothi SN. Psychosocial Issues of Children Infected with HIV/AIDS. Indian J Psychol Med. 2013;35(1):19-22. doi:10.4103/0253-7176.112195
  6. Namukwaya S, Paparini S, Seeley J, Bernays S. "How Do We Start? And How Will They React?" Disclosing to Young People with Perinatally Acquired HIV in Uganda. Front Public Health. 2017;5:343. Published 2017 Dec 13. doi:10.3389/fpubh.2017.00343
  7. Turan JM, Elafros MA, Logie CH, et al. Challenges and opportunities in examining and addressing intersectional stigma and health. BMC Med. 2019;17(1):7. Published 2019 Feb 15. doi:10.1186/s12916-018-1246-9
  8. White Hughto JM, Reisner SL, Pachankis JE. Transgender stigma and health: A critical review of stigma determinants, mechanisms, and interventions. Soc Sci Med. 2015;147:222-231. doi:10.1016/j.socscimed.2015.11.010
  9. Magno L, Silva LAVD, Veras MA, Pereira-Santos M, Dourado I. Stigma and discrimination related to gender identity and vulnerability to HIV/AIDS among transgender women: a systematic review. Estigma e discriminação relacionados à identidade de gênero e à vulnerabilidade ao HIV/aids entre mulheres transgênero: revisão sistemática. Cad Saude Publica. 2019;35(4):e00112718. doi:10.1590/0102-311X00112718

NP-GBL-HVX-COCO-230023 | December 2023

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