In this manuscript we highlight the ways that participants strove for a good life in which they could experience well-being in the face of HIV-related stigma. All participants shared the emotional pain and social rejection precipitated by HIV-related stigma. Yet, they found new ways of living a life. Although stigma continued to create barriers to their well-being, they shared stories of their inner strengths and resources, as well as external factors that helped them along that journey.
We begin by describing the experiences of intersecting stigmas and the emotional and social impacts of stigma that participants chose to share to provide context for the factors that supported participants as they were striving toward well-being. We then describe the four themes that emerged about the factors that supported well-being a) caring for oneself, b) caring for children and pets; c) reconstituting social support networks; and d) resisting and disrupting stigma. We end by summarizing the system and structural resources that participants identified as important to flourishing in the context of HIV stigma. Quotes are identified according to the participant’s gender woman (W) or man (M) and a code number.
Experiences of intersecting stigmas
Although participants were asked about their experiences of HIV-related stigma, for many, these experiences could not be disengaged from the intersectionality of stigma associated with additional social identities. Stories of intersecting stigmas focused on racism, sexism, and homophobia.
Racism was identified by several participants as having significant negative effects on their lives both prior to, and after, being diagnosed with HIV. For example, one participant spoke about the verbal abuse and social marginalization experienced as a Black person growing up in a predominately White community and how that prompted them to leave school and the community. Indigenous participants talked about being bullied and verbally abused. Another participant explained how being Black, and an immigrant to Canada both intersected with HIV in their experience of stigma and discrimination.
Sexism was described in the context of stigma and discrimination by two women participants who noted the challenges that women often faced. They identified attitudes and behaviours focused on blaming women. One participant noted that:
There is an idea that women ask for it, you know, that they ask to be in… abusive relationships…. There is a perverse idea that they have to explain themselves. You know, otherwise, they just must fit into a category. It must be their fault” (W03).
Another participant who was an immigrant to Canada shared her perspective of how women in some cultures can be blamed in particular ways for anything that is perceived as wrong, leading to abuse and being trapped in marriages with no way out. Another woman spoke about prevailing assumptions that people who are diagnosed with HIV must be either street workers or injection drug users. These assumptions were connected to a blaming culture inside and outside health and social care systems that tied HIV infection to people’s personal behaviours rather than the structural systems that placed people at risk.
Homophobia was also a source of discrimination. Participants who identified as gay talked about the ways that having HIV compounded negative attitudes from family and other social networks. One participant said:
Well you know, for me it [is my] family that doesn’t respect me, … like my mother is embarrassed about me. It was bad enough that I was gay, but HIV was a complete no, no. She loved me anyways, but she was embarrassed, and it was shameful [for her] (M09).
For this participant and another, there was an overlay of religious belief systems that exacerbated negative attitudes toward both homosexuality and HIV. One participant described this as the perception in some religious communities that HIV was “punishment” for being gay. Another participant noted the impact of colonization and the imposition of dominant Western worldviews that consider sex a taboo subject resulting in barriers to education about HIV in some communities. She noted, “Western philosophy is that you get married and you don’t deal with [sexually transmitted infections]; because of colonization you don’t talk about things … that’s a very taboo subject” (W06).
The emotional and social impacts of stigma
The system, structural, and social attitudes and behaviours toward people living with HIV had deep emotional impacts. Stigmatizing attitudes toward HIV often resulted in their own feelings of shame and self-stigma. For many participants these feelings were most prominent immediately after diagnosis but could last for years.
Interpersonal and structural oppressions from HIV and intersecting stigmas led to the experience of fear for many participants. Fear was most often related to worries about how a partner, family, or friends would react when they discovered the person’s diagnosis. In many cases people were fearful of violence and rejection. For some, enacted physical and emotional violence led to increased fear of additional and exacerbated violence related to disclosing an HIV diagnosis.
The fear of, or previous experience with, rejection tended to result in deep emotional pain. For many participants, although feelings of shame and internalized stigma dissipated over time, the fear of rejection from sexual partners, family, friends, and acquaintances often persisted. Participants responded to the fear of rejection in various ways such as avoiding intimate relationships in which they felt disclosure might be necessary. Some participants noted that fear of rejection prevented disclosure when there was a desire to talk more openly about HIV to family, friends, and acquaintances.
Social isolation and pervasive feelings of loneliness was a prominent outcome of stigma. Stigma precipitated disruption in previous relationships. Participants talked about losing relationships once their friends or family found out they were HIV-positive. One participant said: “Like nobody won’t want to come close to me because what I have, or visit me. I lost a lot of friends because of it … I don’t go around people anymore because they always bully me” (W12). Fear of rejection was often the impetus for long term isolation and loneliness. Several participants talked about their strategies for protecting themselves emotionally by “isolating” themselves, “hiding,” or “building a wall.”
Striving toward well-being
Despite the many negative impacts of stigma on participants’ lives, they all strove toward well-being in their own ways, and were at various stages of having lives they considered to be good. Participants shared their perspectives about the factors that supported their journey toward well-being in the context of HIV and intersecting forms of stigma. Four themes related to these factors were conceptualized from the data: a) caring for oneself; b) caring for people and pets, c) reconstituting social supports, and d) resisting and disrupting stigma.
Caring for oneself
Participants reported that being diagnosed with HIV was a disruption that caused personal distress and was difficult to endure. Those who mentioned this disruption also indicated that they needed time to personally deal with their diagnosis. For one participant, “HIV was the biggest rock thrown at me” (W03). In response to the diagnosis of HIV, some participants stated that they dealt with the diagnosis through behaviours they later saw as self-destructive. For example, one participant noted that there is “devastation finding out that you are HIV positive” and that “it is common you hear people self-medicating, you know like whatever drugs or alcohol and especially the first year, and it [is] usually the hardest year” (W03).
Many participants spoke about the transition toward looking after themselves physically. This was not always a smooth or direct path but evolved as they gained a greater understanding of how they could live well with HIV. Although some participants talked about taking care of their physical health though good nutrition and exercise, adherence to a strict medication regime was challenging for many. One participant who initially struggled with making HIV medications a part of her life referred to the picture of pills (Fig. 1) stating said,
“I think of this picture, a very powerful picture for people living with HIV, you know, because that’s what you have to remember. You gotta remember that every day, you know…. You gotta have that glass of water. You gotta have those drugs…. And, uh, it’s helping me in my life, my life span” (W01).
Participants talked about the importance of taking care of themselves emotionally. Overcoming the self-stigma that affected their self-esteem was central to improving their emotional well-being. One participant described addressing the anger they felt when they were first diagnosed:
I am totally a different person then I was when I was first diagnosed. I had a lot of anger issues about society, religion, my parents, and my friends, and with this stigma of HIV and through the years, just working with the counsellor has really burst the bubble, the venom that was inside me. I learned to love myself and respect myself (M09).
Another participant echoed a common perspective of the importance of maintaining hope: “I will feel down if I lost hope with myself and about my future living with HIV… I don’t want to lose that hope” (W05). Self-respect and maintaining hope translated into acts of resistance for participants: “I guess the strength is to hold your head up high, even during adversity … and never give in to people’s bigotry and stigma they have against you. Just hold your head up high” (M09). Another participant used the analogy of a snake (Fig. 2) to describe her approach to dealing with stigma.
[The snake] is a powerful creature and he is god’s gift and that’s how I feel about myself and about stigma. Yeah sure it burns and hurts for a little bit and then you get over it and you take everybody’s words and opinions into consideration. If your opinion is ignorant and if it demeans me in anyway, I am not going to take that and carry that negativity with me. I am going to dispose it, just like that snake sheds its skin (W06).
Taking care of oneself emotionally and physically also had spiritual and cultural dimensions in which participants sought “peace” and grounding in particular environments. For some, spending time in nature and the natural environment was important. One participant stated: “I find that nature brings me a lot of peace… I can breathe in the air I can just be in the moment… I find that so makes me feel relaxed” (W03).
Another participant used a photo of a trapline to talk about her hope to live in the wilderness and teach her grandchildren about that way of life. Although she recognized that she needed to be close to an urban centre to access health services, her wish to be connected to nature was a prominent theme in her story.
You won’t hear vehicles going by and you will just hear the leaves dancing around and the water flowing. That is how I would like to live. I know that I have HIV, but I would like to live in the wilderness with my grandchildren (W12).
Some participants found “peace” in spaces that they created for themselves. One participant described a place in his home that he had created and the spiritual value it held for him:
It is a very peaceful place, remembrance of people who have passed on, family and friends that are still alive, and momentums of people and my dogs that passed away.… It is a place that I can be; centre myself with my creator and creatoress. I light the incense and I put the light on, and I mediate a little bit (M09).
Taking care of oneself emotionally and spiritually including cultural aspects of healing, were essential. For one participant participation in a group that took part in sweat lodges, shake tents, drumming and singing was essential to her well-being. She said: “we reach back down to our roots and our ancestry to heal with HIV” (W06).
Caring for people and pets
Participants talked about the importance of caring for, and about, people and pets as vital to their own well-being. Several women participants identified the importance of children and mothering in their lives. The knowledge that they could have children who would be HIV-negative was life changing. One participant remembered the hope she felt when she learned she could give birth to a baby who would be HIV-negative: “I am going to love my baby to no end. My baby is going to be born healthy. My baby is going to be born HIV negative, and they are going to grow up, and they are going to have lives of their own” (W07). Another participant talked about her children being the source of her resilience.
Some participants noted the mutual caring they experienced from pets, particularly cats and dogs. Pets helped these participants feel less lonely and to enjoy the things that make them feel good, like one participant who talked about going outside for a winter walk—not alone but in company of her dog (Fig. 3).
We go for walks… It makes me feel good because that is something that I really enjoy … and I am not alone, and I don’t have to stifle by having people around me. Sometimes you just need to be alone but not completely alone. Makes me feel good anyways (W03).
Another participant described her cat as being unquestionably supportive “a cat doesn’t care,… doesn’t care if you’re sick… the cat will actually try and take care of you most of the time” (W01).
Some participants also highlighted their responsibility to reduce risks to other people, particularly sexual partners. “We have to be careful; we have to … minimize the risk for other people and that includes me taking my medication. If I didn’t take my medication, I would be a greater risk to society” (M02). One participant used the analogy of driving a car and how the driver is “responsible for the rest of the people in the vehicle” (W01). In addition to reducing risks to people, reciprocity of caring was identified as being very meaningful. Another participant said that people “cannot live individually. We have to support each other; we have to care for each other no matter what…. All human beings [need] to support each other or otherwise it is meaningless” (W05).
Reconfiguring social networks
Participants experienced disrupted, lost, and missed opportunities for relationships due to stigma and needed to reconfigure some of their social networks in response. Of particular importance for many participants was connecting with a community of peers who helped relieve the emotional burden of stigma. This ability to find connection could be life-affirming and life changing. One participant noted the importance of:
Meeting other people who are HIV positive, knowing that I was not alone. There are so many people who are dealing with the same thing. I think that was probably what brought me out of it, it just being able to talk with other people (W03).
This peer support assisted her emotionally and gave her the strength to talk openly with her family about being HIV-positive. She viewed disclosure of her HIV-positive status to her family as a major step in moving on with her life.
Finding a network of support was core to many participants’ connection with others and to nurturing a positive sense of self. Participants described peer connections as comforting, as instilling feelings of power, and as providing role models who have prevailed over oppression and discrimination.
Resisting and disrupting stigma
Participants resisted stigma in their own lives. Several participants worked diligently to disrupt stigma within their social circles, and a few had become strong advocates for social change. Resisting stigma tended to be a personal journey. As participants learned more about HIV and spent time with people who were accepting and non-judgmental, the oppressive social attitudes and structures that created and sustained stigma and the intersections across racism, sexism, and homophobia became more evident and lessened self-blame.
Although often challenging, some participants spoke about the ways they resisted the stigmas that were directed toward them personally. This included educating people in their social circles, such as family, friends, and acquaintances. Educating other people was sometimes in the context of the disclosure about their own HIV-positive status with the goal of negotiating and preserving relationships. At other times it was motivated by helping people feel more comfortable around them as described by a participant who educated women who were incarcerated about HIV. Another participant spoke about wanting to educate people in her community without disclosing her own status:
Like with my friends, I don’t want to tell them about my stigma, about my HIV but sometimes I try to share [HIV information with] them without telling them [details about me] (W05).
A few participants became strong advocates for social change by speaking publicly about their own HIV experiences. They became peer mentors and spoke in variety of forums, such as workshops and conferences, with the goal of disrupting HIV stigma.
Resources and supports
The journey toward wellness was not a smooth or direct path. Understanding and supportive partners, families, and friends were essential. Participants recognized the social and structural drivers of stigma and resource availability. They also identified several structural and system supports and resources that they believed were necessary to improve well-being of people living with HIV and disrupt stigmas. These were themed as: a) financial, housing, and food security; b) health, social, and justice services that are trauma-informed, culturally safer and responsive, and HIV evidence-informed; c) anti-oppressive community spaces; d) timely, factual, and universal access to education about HIV; e) access to peer and professional supports related to strategies to address the social and emotional aspects of stigma; and f) training, support, and opportunities to engage in peer mentorship, public education, and anti-stigma advocacy for people living with HIV.
Financial, housing, and food security
Several participants spoke about the importance of securing financial resources for housing and food security. Financial insecurity could predate an HIV diagnosis but the increased need for medications and a healthy diet, along with gaps in their ability to work due to illness after an HIV diagnosis, could exacerbate vulnerability. For example, one participant used the photo of a downtown bus shelter as a catalyst to talk about a time when he was hospitalized, couldn’t work, and didn’t have sufficient funds to pay for his rent or the insurance deductible for his medications. He said, “that’s what that image burned in my mind is [I] could have been [sleeping in a bus shelter]; thank [my] lucky stars that [I] didn’t end up totally homeless” (M02). He went on to say that governments need to provide enough funding to prevent homelessness. Several additional participants reinforced the importance of social supports to the well-being of people living with HIV. For example, a woman who identified as an immigrant to Canada noted the role of social supports in meeting the holistic needs of people living with HIV “emotionally, mentally, physically and spiritually.”
Health, social, and justice services that are trauma-informed, culturally safer and responsive, and HIV evidence-informed
Several participants spoke about having negative experiences within health, social, and justice systems and how these experiences could increase the trauma of HIV stigma and discrimination. At the time of diagnosis, these experiences included not being allowed to have a friend with them when given the results of their HIV test or not being provided with important information. Experiences also included questions from health and social care providers that the participant felt were stigmatizing. One participant talked about health promotion materials in the waiting room that they felt depicted people with HIV as being from particular racial and ethnic groups. In several cases participants felt that health and social care workers were ill-informed about current evidence related to HIV and that more needed to be done to ensure they were well-educated.
Anti-oppressive community spaces
Participants’ stories about their experiences of racism, sexism, homophobia, and HIV-related stigma frequently occurred in schools, churches, health and social care institutions, and other community spaces. The need for strategies to reduce and eliminate oppression in these spaces was a desire of several participants.
Timely, factual, and universal access to education about HIV
Like the need for education for workers in health and social service systems, participants talked about the need for more universal access to HIV-related education. This was expressed variously as doing workshops and sessions in locations such as schools to increase the public’s education about HIV and stigma reduction. Participant W03 noted,
We need to address stigma at many levels. There is a stigma in the healthcare system, there is stigma in the general population, there is stigma in employers. Like how do we address that? More education, having that conversation.
Several participants shared the view that conversations about HIV were needed to ensure that the most up-to-date information about HIV was available to people living with HIV as well as the public. Examples of ways that participants felt this universal educational approach would be beneficial included reducing internalized stigma and grief when people are first diagnosed, and increasing employers’ understanding of HIV to facilitate employment opportunities and retention for people living with HIV.
Access to peer and professional supports related to strategies to address the social and emotional aspects of stigma
Several participants spoke about the importance of peer supports. One participant described the positive difference that finding peer support in a health clinic made to her. In talking about peers that she met at the clinic she said,
You really just need to be given an HIV mentor when you are first diagnosed… you need someone that lives with it [HIV]. Only they can explain what it’s going to be like for the rest of your life. A doctor can’t tell you what it is like for the rest of your life. But getting to talk to people who live with it and knowing their experiences and how they dealt with it and how they’re doing now. I really could have used that when I first got diagnosed. I really could have used that family in the beginning. I am so grateful that I found them when I needed them (W07).
This quote represented the idea that multiple types of supports were needed that emphasized different perspectives. Important medical needs could be addressed by a doctor while participants also found peer support and professional counselling valuable in addressing social and emotional needs including resisting stigma.
Training, support, and opportunities to engage in peer mentorship, public education, and anti-stigma advocacy for people living with HIV
A few participants spoke about their experiences being mentors, educators, and advocates. One participant spoke about the importance of these experiences and the need for more opportunities.
I have come so far since my first diagnosis 10 years ago to where I am. [I am now] going to national conferences and speaking to the media, to being a support system for other Indigenous women or anyone in general with HIV. One of my big concerns is that I would like to see in future… a peer mentorship program where… I can speak to someone… especially newly diagnosed, to normalize it (HIV) and to actually let them know somebody cares (W06).
Although this participant had found opportunities for peer mentorship, education, and advocacy, she also believed that more were needed. These opportunities needed to come with dedicated funding to support activities like a formal peer mentorship program.