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Life with HIV

From the many themes about the artists’ lives that arose through the workshop, we chose the ten that appeared most regularly. Every woman is different, and each has a wide range of individual experiences. But as a group, these themes tell a collective story of life with HIV starting with the impact of receiving an HIV diagnosis. Often for women this was associated with a late diagnosis or with advance disease. And for the women in the workshop with children, it impacted their parenting style, and placing much of their focus on their children and other family members. Many of the artists spoke about issues with health and HIV medication, and particular experiences of reproductive coercion and reproductive agency. They also spoke of experiencing stigma both in and outside of health services, and because of this, a number of the artists chose to live a double life.

The Trauma of

Diagnosis

Betty

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Betty talked about the significant negative impacts and trauma of an HIV diagnosis in her life.

Late

Diagnosis

Shontaiya

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Stereotypical and stigmatizing understandings of who is affected by HIV often meant that many women suffered years of ill health before they were diagnosed with HIV.

Isolation

Lisa

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Women living with HIV experience different degrees of isolation. For some, this resulted from ill health or fear of stigma and for others, they felt very alone when they were first diagnosed.

Impacts On Parenting

Style and Concerns

For Their Children

Ange

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An HIV diagnosis had a profound impact on many aspects of the artists' lives, including their parenting.

Looking After

First

Others Needs

Abbie

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Despite the trauma of a diagnosis, the women often felt that they were unable to process it because of their responsibilities such as parental or work responsibilities. For many, meeting other women living with HIV was a significant turning point in the healing process.

Health and

Medication

Abbie

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While many women reported facing challenges related to life-long medication, and issues with side effects, they also reflected on how HIV treatment has greatly improved, with zero risk of transmission to others.

Reproductive

Coercion

KC

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The time of diagnosis can be challenging, with multiple intersecting factors including choices around wanting to have children. Some women in the early days of the HIV epidemic were counselled to have abortions and hysterectomies, which many did.

Reproductive

Agency

Katherine

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A number of the women recounted how they actively chose to have children despite facing stigma in the Australian health system.

Stigma

Shontaiya

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Sadly, stigma and marginalization are common features of living with HIV. This was the case in the 1980s and it continues to negatively impact women living with HIV today.

Living a

Double Life

Shontaiya

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For some of the women, stigma and marginalization resulted in practices such as hiding a diagnosis and choosing to lead a double life, which can be very stressful.

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