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
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.
When Kim lost her job in 2002, everything went downhill from there. Within a couple of years she lost her house and ended up living on the street. In 2011 Kim was diagnosed with HIV with a low CD4 count. She now lives in a one-bedroom apartment and volunteers in Calgary’s HIV community.
I first experienced HIV stigma right after testing positive. Although my boyfriend at the time tested negative, he beat me badly. He also told my father, sister and friends that I was HIV positive without my permission. I felt judged by most of them.
In 2016, I had to call an ambulance after tripping and sustaining a broken ankle and head injury. Because I was bleeding, I told the paramedics that I was HIV positive, at which point they became visibly uncomfortable. They started talking about me like I wasn’t there and they would barely touch me. Once I got to Emergency this treatment continued. The whole experience was traumatic.
I knew stigma before my diagnosis, too, as a result of living on the street. Some friends turned their back on me when I first started living on the street, and then I lost more friends after getting HIV. My self-esteem was nil. I always wore a ball cap and wanted to hide under a rock.
At this point I can’t imagine dating again, as I wouldn’t know when to tell someone that I’m HIV positive—would I tell them as soon as we started seeing each other or wait until getting intimate? Then there’s the risk of rejection, which would set me back. My mental health is deteriorating big time.
What has helped me the most has been getting involved with HIV organizations (like HIV Community Link and the Alberta Community Council on HIV’s Positive Voices Caucus)—it’s given me a sense of purpose and community. And it’s allowed me to meet others who are living with HIV. Attending meetings, HIV conferences and support groups helps me know that I’m not the only one dealing with this. When I see others with HIV who are strong and confident, I feel like I can handle it, too.
Lynn Thompson, 45
Lynn is a First Nations woman from Pine Creek First Nation who was diagnosed with HIV in 1998. A tireless advocate for people living with HIV, she is well known in the HIV community and considers herself a support and information hub for women living with HIV, an informal peer worker and activist.
If you want to talk about stigma, you’re talking to someone from the right province. We are truly in crisis mode in Saskatchewan—stigma is driving the high rates of HIV, especially in small communities. [In Saskatchewan, the number of people diagnosed with HIV in 2015 was more than double the national average: 14.4/100,000 compared to 5.8/100,000.]
I first encountered stigma at my first appointment with an HIV specialist. After telling the doctor that I had experimented with injection drugs but had never been addicted, he said that I would need to go on methadone and threatened that if I didn’t, he would admit me to the psych ward. Thankfully, my therapist was able to step in to vouch for me, convincing the doctor that I was not struggling with addictions and did not need methadone.
I lost many friends after disclosing my status. I have been spit on and called names like “diseased bitch” and worse. Because of stigma and discrimination I wasn’t even allowed to go to a sweat lodge. When I participated in a sacred Indigenous Sun Dance ceremony, people worried that they might get HIV from me via mosquitoes.
Stigma can be a huge problem in small towns or on reserves. In some First Nations communities, there’s not much confidentiality or privacy. If a relative works in the clinic, word can get out easily. This deters people from getting tested and seeking healthcare. That’s why we have so many late diagnoses in Saskatchewan.
I have even seen young pregnant women who are not diagnosed until the end of their term. The fear of having their HIV reported and the child taken into custody by child services once it’s born prevents some young women from getting tested or getting prenatal care. Imagine how hard that is for a young mom.
After my own diagnosis, I could have gone into fight mode or flight mode, and I chose to fight. I learned everything I could about the virus. I went to an All Nations Hope conference in Regina and decided that I would not die silently, like so many I knew. I couldn’t sit back and watch my people die. I feel the need to speak out and try to help fight stigma as much as possible. It’s been very healing for me to support others.
We need more voices, we need to be strong and teach our people. We have to band together as people living with HIV. HIV doesn’t walk in front of me causing me to stumble; HIV is not behind me as a burden; HIV walks beside me as my best friend would. I have to peacefully accept it. If my people can do the same and realize they’re not “bad” for getting HIV and they’re not throwaway Indians, it will hopefully change their mindset. First Nations are incredibly spiritual and this shift can be powerful.
As people with HIV we need to talk about our lives and be seen as humans, not just patients. We need more than medical teams and pills. Having mentors and peer navigators [people with lived experience who provide support to others with HIV] helps us feel connected and supported. We need the greater involvement of people with HIV/AIDS (GIPA), and more focus on mental health and spirituality, not just physical health. We need to remember the human in HIV.
If we as people living with HIV continue to share our stories—provided we feel safe enough to do so—we will surely challenge misinformation and generate more awareness and empathy, thereby chipping away at stigma.
After telling my stingray story to a friend, he was surprised that after more than 20 years living with HIV I still struggle with stigma. While treatment has advanced in leaps and bounds and HIV has become much more manageable, stigma remains rampant. Hopefully one day HIV will be seen as simply another health condition.
While we can’t control what happens to us, we do have some control over how we respond to it. History has shown that we are a resilient community. Let us respond to HIV stigma with the same passion and determination that we have shown throughout the history of the AIDS epidemic.
The People Living with HIV Stigma Index charts trends in HIV-related stigma and discrimination in more than 90 countries. This peer-driven project aims to empower people living with HIV to speak out about stigma, and in doing so, create meaningful change. To learn about work being done in Canada and around the world, visit www.stigmaindex.org
Kath Webster has been active in the HIV community since her diagnosis 22 years ago. Among other adventures, she helped bring the Positive Leadership Development Institute to B.C. Kath lives happily in East Vancouver.