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Fighting Stigma and Discrimination against Women Living with HIV

By: Jennifer Johnsen, MD, MPH

Stigma and discrimination are all too common for many women living with HIV. Yet despite its devastating effects, stigma often receives little attention.

There are many factors that contribute to stigma and discrimination against people living with HIV. Most of these reflect people's ignorance of the basic facts about HIV and their resulting fears about HIV-positive people. Because there is currently no cure for HIV, fear about it can sometimes be quite strong.

Most people living with HIV become infected through sexual contact or injecting drugs, behaviors that are already often stigmatized in our society. HIV may be seen as a ‘punishment’ for immoral or bad behavior. As HIV treatment advocate Heidi Nass pointed out, “People who get HIV aren’t doing anything differently than most people they know. The only thing that separates you from all the women who’ve had sexual intercourse with a man or shared a needle but didn’t get HIV is that you got HIV.”

Defining Stigma and Discrimination

Stigma is an attitude or belief about a person or group of people that discredits or shames them. It highlights a perceived negative ‘difference’ between people and uses that difference as a label to separate people and attribute undesirable characteristics to those who are stigmatized. Discrimination refers to the acts taken as a result of stigmatizing beliefs. If a woman’s mother-in-law thinks that she is dirty or unclean because she is HIV-positive, the HIV positive woman faces stigma. If her mother-in-law refuses to allow her in the kitchen because she thinks she is dirty, then the HIV-positive woman is also facing discrimination.

Both stigma and discrimination can be complicated experiences that occur at different levels and in different forms. They can happen between individuals, or at a broader, social level.  They can be visible and obvious (such as when an HIV-positive person is refused health services), or more indirect (such as when a health care provider uses unnecessary precautions when treating an HIV-positive patient).

People living with HIV can also hold negative beliefs about HIV and stigmatize themselves. This is called self-stigma, or internalized stigma, and it can be just as damaging (if not more so) than stigma received from others. A blogger from A Girl Like Me describes being asked to participate in an interview and photography session and the impact it had on her self-stigma. “I have felt isolated, alone, ashamed, stigmatized.  The worst part of that is that I have stigmatized myself. I had decided that I was less than. Not worthy of a great and long life. Not worthy of health and happiness and love and success…I can’t even begin to tell you how at peace I felt when [the photographer] left… I truly felt for the first time in a long time that I am very special, valuable and worthy.”

Stigma’s Harmful Effects

Through studies and anecdotes we know that stigma and discrimination have damaging effects on the health of women and girls. These apply to both women and girls at risk of getting HIV and those already living with it. Across the globe, the lives of women and girls are shaped by a number of gender-based inequalities - social, economic, and political, which may exacerbate HIV-related stigma.  Perhaps the most devastating effects of HIV stigma and discrimination for women are those that result from social rejection and exclusion, which can lead to low self-esteem and depression.

Stigma against HIV/AIDS is also a barrier to testing and treatment. Studies have shown that stigmatizing beliefs and/or fear of stigma keep people from getting tested for HIV, getting linked to or having access to care, staying in care, getting HIV drugs, and taking their HIV drugs correctly.

Triumphing Over Stigma and Discrimination

Although HIV-related stigma and discrimination are pervasive and harmful, many women living withHIV have triumphed in the face of them.  Another A Girl Like Me blogger describes how she overcame stigma: “Every step I took to piece my life back together, stigma would be waiting. The fear of being alone and unloved was something I could not bear…as time went by, I moved into a supportive housing complex with people like me. I began to learn through them, how to really come to terms with my diagnosis. I saw life and laughter and although there were some who lost everything, they were still happy. It became contagious. I wanted that kind of life. However, it would entail the sharing of my story.  So one day I did just that at an event where I would share to hundreds of bike riders. For the first time in my life, I felt peace and freedom. I received love, hugs and well wishes from people who were not afraid to touch me. It moved me to continue to share my story.”

While not every HIV-positive woman chooses to tell her story publicly, each woman can work on the story she tells herself. What women tell themselves about themselves is entirely under their control. “Many write me from all over the world with the same question,” said Maria Mejia, an HIV-positive social media activist. “How can I be so open about having HIV? How did I get the courage to be so open? My response is always the same: I have no shame! There is nothing wrong with having HIV! Have self- love and know that you’re not less than because of HIV!”

Connecting with others and getting support can be of tremendous help to HIV-positive women who experience stigma and discrimination, depression, or isolation. One potential resource is The Well Project’s A Girl Like Me blog, which features a diverse group of women living with HIV and sharing their stories in an effort to break the silence that strengthens stigma.

 


The Well Project is a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls.

The Well Project aims to accomplish this by focusing on three critical gaps related to women and HIV: information access, community support and targeted research. Over the past 10 years, The Well Project has evolved with current technology to dramatically increase the availability and accessibility of relevant and life-saving information specific for women and girls living with HIV. Together, we can change the tide of the HIV epidemic…one woman at a time.

For more information about The Well Project or A Girl Like Me, please visit our websites: www.thewellproject.org and www.girllikeme.org.


 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Copyright 2018, Positive Health Publications, Inc.

This magazine is intended to enhance your relationship with your doctor - not replace it! Medical treatments and products should always be discussed with a licensed physician who has experience treating HIV and AIDS!