"Each time I have to disclose I get anxious, I experience fear of the unknown, and most times when disclosing to a potential sex partner I am left feeling like damaged goods, hopeless because the rejection that is often an automatic response is based on fear that has no basis due to lack of education about the virus.”
In January 2015 the Salamander Trust in partnership with the Department of Reproductive Health and Research at World Health Organization and in consultation with several other non governmental organizations, released their findings from a research survey conducted for the purpose of updating and prioritizing guidelines pertaining to health care, policy and engagement of the community grounded in human rights.
The results of the survey are exciting as not only do they corroborate what I have emphasized for some time, but the design and every stage of the survey was based on needs identified by the voices of women living with HIV, focusing on what works well, making the survey relevant in identifying our problems while providing guidelines for essential services to the 50-55% of people living with HIV globally who are women.
Disclosure is a key element for women living with HIV, because how disclosure is received will influence many other aspects of a woman's life. After diagnosis there is a basic human need to disclose traumatic information for all women regardless of whether they choose to or not. This point is crucial for many reasons. If disclosure of one's status is well received there will be more of a tendency to seek and become engaged in supportive services, including health care, consistent follow up, along with mental health care and support.
Finding and maintaining a partner for intimacy, sex and support will also be much easier if disclosure is received well and will prevent women from living in isolation and maintaining a lifestyle that is based on fear and anxiety, as disclosure comes with risk of violence.
If disclosure is well received women are more inclined to get involved in organizing and supporting one another to ensure a human rights based approach in addressing HIV prevention.
Violence can be measured on a continuum from extreme experiences of murder to more subtle forms of violence when seeking intimacy and sex. Seeking and maintaining a partner for intimacy and sex provides women with a sense of normalcy and security. As one anonymous participant described so well in the survey . . .
“Sexuality is a fundamental dimension of human beings that accompanies us from when we are born till we die. Acknowledging this, for good or bad, our destiny will lie in the policies you put in place.”
The results of this survey serve to remind us to be acutely aware that disclosure still remains a risk for many women in all regions of the world.
While I do acknowledge common themes between men and women in terms of disclosure, women do have different experiences in the process that are described in the survey. The findings of the survey are presented using a house as a metaphor, with the foundation being safety of women living with HIV with their voices and diversity being essential. The protective walls of the house are composed of human rights, gender equality, social justice, treatment, financial security and mental health. The roof represents pleasurable and fulfilling sex lives, pregnancy and fertility desires, and supporting partners, children and community. As each element is key to building a safe house for women living with HIV, this model creates a universal framework which can be incorporated from local to global levels of organizations providing services to women living with HIV to ensure reproductive and human rights of all women living with HIV.
Most times I feel as though I am being silenced as the potential sex partner is so upset about the news of my HIV they do not want to hear another word from me and are preoccupied looking for an escape route. At times there are insensitive remarks made and demands to explain my situation and how I managed to become HIV positive.
I will not explain myself to anyone. I am tired of trying to educate potential partners who are not interested in hearing, and for the most part it is easier to isolate myself to avoid the risk of being kicked around and rejected in hurtful ways. It takes too much energy and requires a layer of thick skin.
When I have the energy I will go back out and try it again but for now I feel safe in isolation yet completely unsatisfied and anxious most days.
When I read the survey I felt supported as 32% of participants described how their sex lives were not satisfying or pleasurable either. It confirmed how I am not alone and the problem is not me when I worry about the consequences of disclosure including violence and how overall I feel silenced and not safe. This comies from a white middle class woman. Imagine the fear of ethnically diverse groups of women including transgender and lesbian women.
My protective walls leave me with feelings of fear and anxiety as I am a potential criminal with the present legislation in Canada and every other region of the world. That's an infringement of my basic human rights and dignity. If my viral load is not undetectable and I do not disclose my HIV status to a potential sex partner, or if my sex partner refuses to use condoms I will be prosecuted. I may be prosecuted if I do disclose if I happen to be in a relationship that ends badly and my status is used as a revenge tactic.
My financial security is precarious because although there are laws to protect me in the workplace, my employer can find ways around the laws and dismiss me at any time if I happen to disclose my status in the workplace. I am one step away from poverty. The isolation and constant underlying fear and anxiety does take a toll on my mental health as I often feel exhausted, less than desirable and discouraged.
I am grateful for access to treatment inCanada but the side effects of the treatment and the virus itself leave me feeling self conscious with no sex appeal. I wonder with this new shape I have that resembles a bumble bee with skinny arms and legs and a round middle, how I could even think of getting naked. I have thought about how to proceed if I did find an understanding sex partner who was well educated about HIV. Should I leave the lights off? Should I leave my clothes on? How will I explain this odd shape I have?
I hide at the back of my yoga class so as not to bring attention to the bumble bee look and wear thick tights to make my legs look more in proportion. I am mindful to never wear stripes. Regardless of my efforts I still see people glancing my way and staring. I do have some good days where I simply do not care but on other occasions when my energy is low I allow my self consciousness to take over. All of these factors combined with the notion that women living with HIV should not be having sex take a toll on my mental health.
My roof does not represent a pleasurable and fulfilling sex life based on what I have described and based on my underlying fear of somehow transmitting the virus to a sex partner. On one level I know this is not possible, but on another level the fear that I have carried for years, based on outdated information, remains difficult to shake off. This fear does have an effect on my libido and at times I feel challenged to maintain some sort of balance and normalcy in my life.
I have discussed disclosure with other women and some who are in relationships describe how their partners use their HIV status as blackmail for them to remain with their partner under less than ideal circumstances. Women express fear and anxiety about leaving the relationship. Remaining with a partner is often less anxiety proving than having to go through the disclosure process again with new potential sex partners. Some women have described how their health care provider, family and friends discourage them from having children and shame them into giving up on their dreams of being a parent.
For women who do have children there is constant concern and anxiety about how our children will be treated if our HIV status is disclosed and we often remain silent to protect our children from stigma and discrimination. In remaining silent and isolated we do not always have the opportunity to build, engage with and participate in a supportive community. Suffice it to say my roof is in need of repair.
On the other hand .
.It is not all gloom and doom as there were participants in the survey who reported a satisfying and positive sex life where they experienced trust, respect, communication, in depth understanding of HIV with their partners, informed decisions about STI transmission and pregnancy. There was a high of 86% in the range. However researchers believed this figure to be encouraging while recognizing it reflected well informed, activist linked participants. This does leave us with direction and hope as we could rely on this percentage of women and their partners, to share their positive experiences and act as role models for the community of women living with HIV. We need all the help we can in activism. to strengthen our community in ensuring positive disclosure experiences.
Researcher also reminded the reader that each woman is uniquely different with an individual story and experience. But not all women share their story and experiences and not all health care workers ask for a women's story. This leaves room for women to be stereotyped, misunderstood and stigmatized.
The research emphasises as each woman living with HIV does that HIV does not stigmatize. People and institutions do, Story telling and sharing experiences is a powerful method of addressing stigma and stereotypes. We need to continue to share our stories and experience as we seek solutions to the complexities of disclosure.
Disclosure is a process on a continuum from total isolation and detachment from community and services to women who live openly with HIV as activists and spokeswomen for our community. Each woman has her own unique experiences and story. As this study demonstrates the only way to strengthen the capacity of women living with HIV to make an impact is through the meaningful involvement of women living with HIV and listening to our voices through global consultations and relying on our wealth of experiences.