Living with HIV: “It is not a Death Sentence.” – An interview with Cindy Pivacic

 Genevieve Burrow, Marguerite Bergman, Muhammed Cassim and Lynne Richards [1]

The most pervasive health conditions in South Africa are the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) epidemics (UNAIDS, 2019). In fact, South Africa has the highest prevalence of HIV/AIDS in the world. UNAIDS further reports that in 2018, 7.7 million people in South Africa were HIV positive, with 71, 000 AIDS-related deaths.

In 2004, Cindy Pivacic was diagnosed with HIV as a result of gender-based violence (GBV). GBV refers to psychological, physical, verbal, emotional and/or sexual harm committed against an individual based on either their biological sex or gender identity (Ott, 2017). Prior to her diagnosis, Cindy’s then-long-term partner, John* became ill and required hospitalisation. After John tested positive for HIV, Cindy was instructed to undergo an HIV test, which too was positive. John insisted that he was previously unaware of his status, however, in 2012 Cindy discovered that John knew of his status two years prior to her diagnosis, thus directly and consciously exposing Cindy to harm. Furthermore, John knowingly infected at least two other women, and fathered a child with a third partner.

For several years, Cindy has been an HIV activist, facilitator, trainer, and author of The Deadly Seducer. Although HIV/AIDS increases the risk for mental health disorders such as anxiety, mood disorders and depression (National Institute of Mental Health, 2019), Cindy emphasises that HIV is not a death sentence. Here, Cindy discusses her path to acceptance, protective factors and risk factors, and the peer-based support groups and lay counselling she offers individuals living with HIV/AIDS.

“My HIV status does not define me, it just contributes to a part of my identity.”

In 2011, Cindy publicly disclosed her diagnosis on radio interviews, in magazines and various television shows such as Carte Blanche. Cindy believes, “People need to know what is happening out there and I felt that I had the strength and the character to do it… It was scary at first… Are people going to judge me?” Cindy was further motivated to speak publicly about her status as she was offered neither pre-counselling nor post-counselling. Recognising the dire need for counselling and support, Cindy completed a lay counselling course, including trauma counselling, to assist people who lacked support and access to information. Thereafter, she started a peer-based support group and provided lay trauma counselling to people living with HIV. Through this counselling, Cindy witnessed a transformation from suicidality to acceptance. Providing a support group was especially significant due to the lack of empathy Cindy, and fellow individuals living with HIV, experienced in government hospitals. In fact, Cindy emphasises that future practitioners must exercise empathy.

“People that are HIV positive… especially in the early days, refer to themselves as being stigmatised, and the more you say that, the more you perpetrate the fact that there is a stigma against you.”

Cindy refers to “planting the seed” to get tested through her public speaking, especially among those who think “it will never happen to me”. Dispelling myths is vital, and Cindy emphasises that HIV affects individuals across all social, economic and cultural spheres (UNAIDS,2019). Thus, imparting knowledge and disseminating accurate information is crucial.

Since her diagnosis, Cindy has had shingles, strokes, cancer, tuberculosis meningitis, a massive heart attack and a double bypass. Cindy’s coping mechanisms and protective factors include a healthy lifestyle, fundamentally optimistic outlook, and a strong family, although she realises that people have varied personalities, backgrounds and circumstances. In many cases, family and social support to accept one’s HIV diagnosis is lacking. However, Cindy has witnessed that the major risk factor to negatively affect physical and mental health for HIV positive individuals, is the fear of disappointing family members. Consequently, the support network provided by counselling and support groups plays a pivotal role in the mental health of HIV positive individuals.

In the digital age, online support groups have provided a community for individuals to communicate, an especially important medium for people with stigmatising conditions such as HIV/AIDS (Dorman and White, 2001). This environment allows people to share their feelings and access peer support, however, Cindy warns of the negative side of online support groups – that may provide misinterpretation and misinformation. This again highlights the necessity for trained counsellors and psychologists. Although these groups provide a community of peer-based support, they may be inadequately equipped to help individuals who require professional mental healthcare (Dorman and White, 2001).

Cindy shares practical tips that we should employ when counselling HIV/AIDS positive individuals. In her 15 years of experience, Cindy emphatically points to using the correct language, communication and terminology. For example, Cindy discourages intrusive questions such as “Where did you get it?”, “Are you on medication?”, “Do you know how you got it?”. Some individuals may not know how they contracted the HI virus, and these questions might further perpetuate their shame (Robbins, 2017). This does not allow individuals to speak for themselves, rather, it is disempowering as information should be shared at the individual’s discretion. Robbins expounds on the term “clean” and its potential to negatively affect confidence, as the implication is that one is either “clean” or “dirty” (Robbins, 2017).

Knowing your status is important for treatment, prevention and care (UNAIDS, 2019). In 2018 there were 240,000 new cases of HIV in South Africa, and with diagnosis comes options (UNAIDS, 2019). This includes access to ARTs and medical professionals such as doctors, psychologists and counsellors, is available in public and private hospitals. Furthermore, support groups and organisations are available for people living with HIV/AIDS.

Reach out below:

Families South Africa (FAMSA): 011 975 7106/7

HIVSA: 011 494 1900

LifeLine 24-hour counselling line: 0861 322 322

LoveLife toll-free youth line: 0800 121 900

National AIDS Helpline: 0800 012 322

National Association of People Living with AIDS (NAPWA): 011 873 7156/8

The South African Depression and Anxiety Group (SADAG) 24-hour Helpline: 0800 456 789. Suicide Crisis Line: 0800 567 567

References:

National Institute of Mental Health. 2019. HIV/AIDS and Mental Health. Available at: https://www.nimh.nih.gov/health/topics/hiv-aids/index.shtml (accessed 1 December 2019).

Ott, M. (2017). Series: What Does That Mean? Gender-based Violence. Womenforwomen.org. Available at: https://www.womenforwomen.org/blogs/series-what-does-mean-gender-based-violence (accessed on 1 December 2019).

Robbins, J. 2017. 6 Things You Shouldn’t Ask Me About Living with HIV. Healthline. Available at: https://www.healthline.com/health/hiv-aids/what-not-to-ask-someone-with-hiv#1 (accessed 1 December 2019).

UNAIDS. 2019. Available at: https://www.unaids.org/en (accessed 18 November 2019).

White, M. and Dorman, S. 2001. Receiving social support online: implications for health education. Oxford University Press. Available at: https://academic.oup.com/her/article/16/6/693/571642 (accessed on 18 November 2019).

[1] Authors write in their capacity as members of the Student Division of PsySSA (Psychology Society of South Africa)

*Pseudonym.

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