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Personal Stories

Stigma Stings: 3 Women Who Face Stigma With Courage and Resilience

June 12, 2017

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woman with eyes looking at her

Courtesy of CATIE

Last January, my partner and I flew to Mexico for a vacation. On Day 1, out of the blue, I was stung by stigma. While swimming in the Pacific Ocean, I put my foot down, expecting to feel the soft sand, and instead stepped on a stingray, which spurred an excruciating sting and deep wound.

At the local clinic, I considered disclosing my HIV status, but this was a small Catholic town and I didn't want to face people's judgment or, worse, not be treated at all. So I decided against it. The doctor recommended stitches and wrote me a prescription for antibiotics. Worried they might interact with my HIV meds, I later resorted to Dr. Google (not recommended), which put my mind at ease.

My intense fear of stigma and discrimination caught me off guard and reminded me of the reality faced day to day by so many people with HIV. Because of my fear and my decision to not disclose, I did not receive optimal care that day. I was caught between a rock and a hard place: Both disclosing and not disclosing my HIV status came with its own set of risks.

I see my experience as relatively minor compared to what many people with HIV deal with every day. Especially for people who also face other forms of stigma -- related to their race, gender, class, sexual orientation, being a newcomer, being a sex worker, using injection drugs, having a disability and other factors -- the impacts can be serious.

Stigma is indeed one of the greatest barriers to a complete and satisfying life for people with HIV. In this era of effective HIV treatment, I have heard people with HIV say time and again that the stigma is worse than the disease itself.

Because misinformation and fear perpetuate stigma, I believe that by sharing our stories we can dispel myths and change attitudes. In the process, we can also build our individual and collective resilience to better address stigma.

The impacts of stigma and the ways we respond to it are as diverse as the people living with HIV. Here, three women share their stories and words of wisdom on how they have coped with it.

What Is HIV Stigma?

HIV stigma refers to the negative beliefs, feelings and attitudes that a person or society has about people living with HIV. Discrimination happens when people are treated unfairly due to stigma.

What Are the Impacts?

A person who experiences stigma may feel judged, excluded and looked down upon. Stigma can take a toll on your self-esteem, cause depression, anxiety and social isolation, interfere with how well one adheres to their pill-taking schedule and deter people from accessing health services. Despite human rights laws that prohibit discrimination, it can also lead to people being denied housing, employment, healthcare and entry into a country. It can have serious impacts on a person's mental and physical health. For some, stigma comes with a risk of violence.

The stress of disclosing your HIV status and fear of rejection can get in the way of romantic and sexual relationships. The Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS) collected data from more than 1,400 diverse women with HIV in B.C., Ontario and Quebec over three years. Sixty-seven percent of participants agreed with the statement that "Most people with HIV are rejected when others find out." The research suggests that despite good HIV treatment outcomes, many women living with HIV face challenges navigating healthy and satisfying sex lives.

When someone experiencing stigma comes to believe the negative messages and changes the way he or she views him- or herself, this is referred to as internalized stigma. Twenty-seven percent of the CHIWOS participants agreed with the statement "I am not as good as others because of HIV."

Margarite Sanchez, who lives on B.C.'s Saltspring Island and for years facilitated peer support groups for women, says that for many women internalized stigma is even more harmful than societal stigma. "Once you believe the stigma and internalize it, you can become your own worst enemy. I'm not saying there aren't real dangers for women, but in some cases the isolation and separation are self-imposed because of perceived discrimination."

Muluba Habanyama, 23

Mississauga, Ontario

Muluba was born HIV positive and lost both her parents when she was a teenager. She kept her HIV status a secret her whole life until 2014, when she disclosed in a YouTube video called "Feel No Shame." Muluba has since spoken out about HIV at public forums and in the media. She is a CANFAR National Youth Ambassador and strong voice on three boards of directors for non-profit organizations.

I learned early on that I shouldn't tell others about HIV, so I knew there was some sort of shame about it. As a kid, my mom always gave me my meds. They were a reminder of something I didn't want to think about. Taking pills was also a real pain for sleepovers with friends.

When I was about 10, I discovered the Internet. That's when I really started to see the negativity and awful thoughts that people have about HIV around the world. I thought, "Oh my gosh, are these things true?" Luckily I had my older sister to talk to and she advised me to ignore all the negative comments.

But it was challenging for me to have self-confidence and self-love and to express my feelings. It was hard to reach out for help and admit when I was feeling hurt or down. It got even more difficult when I started to believe what I saw in the media about HIV. I feel that stigma made me not like myself that much.

As I grew older I didn't feel deserving of a relationship -- it didn't seem like an option for me. As a female, I already felt discrimination. Plus, I'm Black. HIV was yet another obstacle.

When I got really sick physically, at age 19, and had to deal with the mental and emotional side of HIV, it was a wakeup call. Maybe I had to nearly lose my life in order to appreciate it. I decided that to move forward I had to speak out. It took me a while to build up the self-love and self-confidence to disclose, but disclosing my status lifted a big weight off me. Once that secret burden was lifted I stopped stigmatizing myself. Now I feel no more shame. I'm so proud of how far I've come.

I wouldn't have been able to disclose to the entire world on YouTube if I hadn't seen HIV activists out there being strong. It means a lot to see people with HIV still fighting for what they believe in.

We are allies for each other. If all else fails, at least I will have their support! I appreciate all I have learned from different communities, like men who have sex with men and people who use injection drugs. These communities have been so welcoming. I feel like we're all in this together.

I think that education is the key to fighting HIV stigma. The myths need to be dispelled and the general public needs to understand more.

Having a deep dark secret can be such a weight on your shoulders but I would never pressure people to disclose their status before they're ready. I realize that most people don't want to have HIV written on their face!

My advice to others is: Find your confident voice. When you hear negative messages, sometimes it's better to just let them go. Be compassionate with yourself and others. Listen to your soul. Use your resources! Practice self-care, self-love, and don't give a damn about other people's opinions.

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This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.

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