HIV negative, yet living with HIV: A qualitative study of the effects of HIV/AIDS on HIV negative gay men in Toronto
Gay Men’s Health Promotion Coordinator
AIDS Committee of Toronto
A special thank you to ACT volunteer Matthew Perry, for his invaluable help transcribing the focus group proceedings from audio tape.
Background and Purpose
A series of four focus group discussions and ten one-to-one interviews with HIV negative gay men were conducted by the AIDS Committee of Toronto (ACT) in late September and early October 1996. The purpose of these groups was to find out first hand the impact of HIV/AIDS on HIV negative gay men in Toronto, with the ultimate goal of developing programming for this particular group of gay men. ACT’s new strategic plan had clearly identified HIV negative gay men as an important community that it should serve; this research would help identify the scope of services ACT could provide for these men.
The objectives of these focus groups and interviews were to:
- determine the impact of HIV/AIDS on HIV negative gay men in Toronto
- determine if the impact of HIV/AIDS has affected the behaviour of HIV negative gay men in Toronto
- determine attitudes and beliefs held about HIV positive individuals
- probe for specific coping mechanisms employed by HIV negative gay men
- probe for suggestions about programmes and services that ACT could develop and offer for HIV negative gay men.
A Few Notes on Qualitative Methodology:
As a research methodology, focus groups are a means of generating discussion and eliciting synergistic insights into particular questions. The purpose of a qualitative methodology such as focus groups is not to test pre-determined hypotheses, but rather to elicit the perspectives of individual participants. Generalizing from a “representative sample” of gay men to gay men in general is not possible; nor is it necessary for the purposes of this research. Rather, the reader should assume that these insights are illuminating and, therefore, directional.
1) HIV/AIDS has had a profound effect on HIV negative gay men in Toronto. Many of these men hold a negative outlook towards their future, believing that infection with HIV is inevitable. Many have experienced multiple losses of friends and/or partners, or anticipate that this will happen to them.
2) Unsafe sexual behaviours may be attributed (in part) to the impact of multiple loss and grief, and a negative outlook towards the future held by some HIV negative gay men.
3) Despite the assumption that AIDSphobia does not exist within the gay community, some of the study participants expressed negative attitudes towards gay men with HIV.
4) The creation of a strong HIV positive identity, while seen as important by HIV negative gay men, has had the unfortunate impact of further polarizing gay men along sero-status lines.
5) Many HIV negative gay men do not feel that they have been given an opportunity to articulate their thoughts, fears and concerns. Only a few men have felt that they have had successful opportunities to cope with their unique struggles as HIV negative gay men; many feel that they do not cope.
6) The AIDS Committee of Toronto and other AIDS Service Organizations are not perceived as places where HIV negative gay men can access service. Existing services to this population are generally unknown.
7) HIV negative men believe that the AIDS Committee of Toronto should be providing more services to HIV negative gay men, such as counselling services and support/discussion groups, as long as these services are not being provided at the expense of services to people with HIV.
A total of 34 HIV negative gay men participated in four focus group discussions held over four nights at ACT. An additional 10 men participated in one-on-one interviews also held at the ACT offices (total sample N = 44).
Participants were recruited through an ad placed in XTRA! magazine. The ad stated: “Are you an HIV- gay man? Your input is needed for a discussion about the impact of HIV/AIDS on your life” .Payment for participation was $30.00. Potential participants were asked to contact John Maxwell at the AIDS Committee of Toronto where they were screened for suitability in this study. They were asked if they preferred to be in a group discussion or a one-on-one interview. Volunteers with AIDS Service Organizations (either past or present) were placed in a focus group of their own.
A total of 72 individuals responded to the ad over a two day period; as a result recruitment was discontinued on the third day. Of these 72 individuals, 44 were scheduled into the focus group discussions and a further 12 into one-on-one interviews. The mean age for participants was 37.5, with the range from 24 - 65. The overwhelming majority of participants had English as their first language. Only 3 participants were people of colour.
Focus groups and one-on-one interviews were facilitated by John Maxwell (Gay Men’s Health Promotion Coordinator) and Dino Paoletti (Support Group Coordinator). Focus groups were audio taped and transcribed.
After brief introductions and an outline of the purpose of these discussions, participants were asked (as an icebreaker exercise) to briefly tell why it was they came to the group. Many of the participants spoke of their desire to finally be included; there was a perception amongst many that as HIV negative gay men, their views and experiences weren’t valid. Several spoke of the schism that seems to exist between HIV positive and HIV negative gay men. Others spoke about the losses they had experienced and the lack of supports for HIV negative gay men.
Participants were then asked a series of questions that aimed to capture their perceptions, thoughts and emotions with respect to HIV and its impact on themselves and the gay community. Discussion then turned to the impact of HIV/AIDS on their behaviours. Finally, the discussion focussed on their coping mechanisms as well as a probe for the types of programmes and services that ACT could provide for HIV negative gay men.
a) Perceptions of how HIV has impacted on the themselves, other HIV- gay men and the community:
When asked, many men spoke about the obvious changes in sexual behaviour that came about as a result of HIV (a commitment to safer sex practices). Still others spoke of HIV being “a way of life", an ever present reality. Other participants felt that there was a denial of the impact of HIV on negative gay men - both from HIV negative men and from the broader gay community. Many saw the focus directed towards HIV positive gay men at the expense of their own feelings and concerns as negative gay men:
If I said ‘it’s hard being HIV negative’ I’d get a response (from HIV positive gay men) like ‘shut up, I’m sick, I’m dying.’
If you’re negative you’re assumed to be normal. I’m not going to be able to say back to people: ‘no, you’re wrong; it’s hard being negative’ .Rather, I’m just going to sit back and take it.
Other gay men noted how HIV has created an “us versus them” mentality within the gay community, separating people with HIV from those who do not have HIV: “there seems to be more segregation in an already segregated community” .There also exists a certain amount of scapegoating of people with HIV and a recognition that in 1996 there still exists stigma with the gay community about being HIV positive.
b) Perceptions of the virus and the future:
For many participants, the virus is perceived as an ever present “black cloud” hanging over the community. Many men described the virus as a “monster” and a “constant” .As one participant noted: “within our community, when somebody dies, we automatically think that it’s AIDS” .Still another participant stated:
In Proud Lives (an obituary column in XTRA! magazine) the odd time I see it mentioned ‘death from heart attack’ .I realize, oh, this column is for other causes of death too (not just AIDS).
As for their views on the future, there seem to be two very different views: those men that see a hopeful future (due to new and better treatments for HIV) and those that either do not think about the future, or else see it in a negative light:
“When I think about the future I worry that certain people are going to tell me that they’ve tested positive and I’ll be alone. A part of me feels that I’ll outlive some men who are younger than me.”
Several participants feared the possibility of growing old or held a fatalistic view that they too would become HIV positive:
I have a great deal of anxiety over aging. What will my role be in the community? There is such a gap between older and younger gay men.
I feel that since I am HIV negative, I will get old all alone.
(I also have) a pessimistic view of the future: will HIV catch up to me, even though I haven’t been unsafe so far? Is this my destiny?
c) Perceptions of people with HIV:
Despite the assumption by many that there no longer exists the great stigma associated with being HIV positive within the gay community, many of the participants (when pressed) noted that they do look differently at people infected with HIV in the early to mid 1980s versus those infected more recently. Although the vast majority stated that they would never say anything to someone about this, thoughts such as “you should have known better” still enter into their minds. There was considerable anger over the increase in new HIV infections amongst younger gay men.
It is important to note that most of the men in the one-on-one interviews were more vocal about these perceptions of people with HIV. While many men in the group discussions expressed these views, they were much less reluctant to do so (perhaps for fear of how other group members would judge them). In the group discussions, men were much more likely to state that they did not pass any judgements on people with HIV.
a) Thoughts about HIV when meeting new sexual partners:
A majority of participants stated that they make the assumption that all of their new sexual partners could be HIV positive. Many stated that they weren’t so concerned about sero status in a casual encounter, but it would be important to know if they were thinking about entering into a relationship with someone.
It was surprising to find that several of the men assumed a positive sero-status based on visual cues (ie the person appeared too thin or had bad personal hygiene), as well as the venues in which men frequented (ceratin bars, bath houses):
I would never go home with someone from The Barn (a bar), or a bath house because I know these peoples’ habits, the people who go there, and they (people with HIV) are more likely to go there.
When asked to give a percentage of their sexual partners who have been HIV positive, there was much variance. While many estimated it to be around fifty percent, others thought it was much lower. Some participants seemed caught off guard by the question and were unable to give a percentage. Most of the men acknowledged that they only found out later that a sex partner had been HIV positive. When asked how this made them feel, many seemed fairly comfortable:
The first time I found out that someone I had slept with was HIV positive, it blew me away. Over time, I’ve been better able to deal with this reality - I’ve had lots of casual sex, so I’d be silly to assume none of them were positive. I’m still (HIV) negative, so it doesn’t freak me out (that I’ve had sex with men who were HIV positive).
b) Thoughts about coming out as a gay man in 1996:
Participants were asked to think about whether they felt it was more/equally/less difficult coming out as a gay man in 1996 versus coming out in the early 1980s. The majority of participants felt that it was easier for all gay men coming out today - whether you were a younger gay man, an older gay man, or a gay man from ethno-cultural communities. The majority of men felt that there was more acceptance of homosexuality in society today, making it easier to come out.
When asked if they felt it was more/equally/less difficult being an older or younger gay man, or a member of an ethno-cultural community, the majority of respondents felt that there were no differences. However, several participants noted the difficulties facing older men in a community that seems to place an emphasis on looking young, as well as ongoing racism within the gay community.
While the majority felt it was easier being gay today, many men spoke of the “shadow of AIDS” that hangs over the community and has been closely linked to a gay identity by the broader community. Thus, to come out as a gay man in 1996 means having to assume the (erroneous) identity of having HIV/AIDS.
c) Thoughts about a cure/the future:
Many men expressed a scepticism over there being a cure any time soon. While many thought that the treatment advances were encouraging, they felt that talk of a cure was too premature: “I seriously doubt there will ever be a cure. I think there will be control (of disease progression). As for my life, it would give me hope that my friends might still be around in my old age”.
As another participant noted:
If there is a cure now, then great, those around me could grow old with me. I don’t think that’s going to happen. Seventy five percent of the people around now won’t be here and that’s our burden.
Still others stated that they didn’t so much think there would be a cure, rather they hoped for a cure: “I’ve never thought about how a cure would affect my life, but I guess I’m hoping there is a cure and that is my way of coping with my anxiety over getting HIV.”
d) Thoughts of the impact of death/multiple losses on the gay community/other HIV negative gay men:
Most of the men acknowledged the profound impact that multiple losses have had on the gay community as a whole. Many of the men recounted their own personal experiences of loss, while others who had not yet lost any friends or partners to HIV felt that this was inevitable: “I don’t know anyone who has died yet, but I know I won’t be able to say that for much longer” .Several participants felt that as HIV negative gay men, their grief wasn’t always acknowledged - because they were healthy (not infected with HIV) their grief wasn’t considered a real problem: “I don’t have the problem because I don’t have the disease, but I’m dealing with a different set of problems because I don’t have the disease”.
Many of the men felt that the profound loss experienced by the gay community isn’t something that any other group of people have experienced, and as a result it is difficult for non-gay peoples to understand its impact:
It’s more difficult when people are in the prime of their life. My parents just don’t get it; they can’t talk to me about this. I saw the AIDS memorial recently and there were three more pillars. It made me stop. I knew so many of their names. I think of what’s ahead of us (as gay people).
As a result of these losses, some of the participants stated that they had attempted to withdraw from others and the community. A few participants felt that multiple losses have had a positive impact on the community: the lesbian and gay community banded together and became stronger. But as one participant noted:
As a community it made us grow, fight and organize. But, what we lost doesn’t make what we gained worth it. We lost our youth. It’s a double edged sword. It was too high a price for us to pay.
e) Thoughts about sero-status and community identity:
Participants were asked if they thought there was such a thing as an HIV negative gay men’s community and an HIV positive gay men’s community. All of the participants agreed that there was an HIV positive gay men’s community. None believed there was such a thing as an HIV negative gay men’s community.
Participants felt that an HIV positive community has been fostered by the range of services and supports created by and for people with HIV. The vast majority of participants felt that the creation of an HIV positive identity (and community) was important as it created support, strength and solidarity amongst people with HIV.
Unfortunately, several participants noted that the creation of an HIV positive identity and community further separated HIV negative and HIV positive gay men. As one man noted, “we were separated from the world (as gay people) and then separated within thecommunity.” Another group participant noted that:
The relationship between HIV negative and HIV positive gay men is much like that of Quebec and the rest of Canada: sure, Quebec is a part of Canada, but it is also separate.
Most of the participants were opposed to the creation of a separate HIV negative identity - they felt that the creation of such an identity would only further polarize gay men along lines of sero-status. Rather, they wanted more interdependence between HIV positive and HIV negative gay men: “I don’t want to be pigeonholed. I want more interdependence. We don’t want to separate out.”
a) Emotional impact of the HIV epidemic on the gay community and HIV negative gay men:
When asked to describe the emotions that come to mind when they think about the emotional impact on themselves and the gay community as a result of the epidemic, the most commonly used words were “loss", “sadness” and “anger” .Many of the men spoke of the accumulated grief and sadness as a result of the death of friends and partners or the anticipatory grief of friends who are beginning to become very ill:
A friend of mine is going through a very rough time and I’m beginning to think now about his death. This will be my first loss of someone really close to me. You can talk to others about this (anticipatory) grief but you can never fully prepare for it.
One participant noted how he had been in denial over the impact of HIV on his life. Before he moved to Toronto from a smaller city, he found it very difficult to escape HIV - because the gay community was so small, you knew everyone, and if someone became HIV positive it was “close to home” .When he moved to Toronto, he found that immersing himself in the gay “ghetto life” of bars and clubs allowed an escape from HIV: he never formed meaningful, close attachments to people. Another participant noted a feeling of distance within the gay community: “a lot of anonymous encounters, but… a lack of real intimacy” as a result of the epidemic.
A smaller number of participants felt that the epidemic had created a more loving, caring and open community. Others stated that the epidemic had caused them to form closer, more intimate relationships with existing friends: “(it’s) important to spend whatever time you have with the people you care about”.
Impact on Behaviour:
a) Impact on the relationships formed with friends/sexual partners:
The participants were asked if they found that the types and intensity of relationships that they formed with other gay men had changed in any way as a result of HIV. Some men noted that they were less open to forming new friendships as a result of AIDS:
I don’t want to form relationships with people who are (HIV) positive because of the pain.
I practise loving detachment in my relationships. The physical is the easiest to address, the emotional and spiritual are the hardest. When they are gone, how do I bridge that?
One participant noted that he had dated a man who later disclosed his positive sero-status. While he was glad that this man chose to disclose to him, he also felt anger. He found that after disclosure, he was unable to continue their relationship, finding it difficult to have sex with him:
The fact that I was dealing with a loaded gun, rather than just playing Russian Roulette made it impossible for me to have sex with him. There was too much anxiety knowing he was positive.
Another participant saw it quite possible that he would become involved with a partner who was HIV positive. This he viewed as something that would be both scary and a source of strength: “It would be important to strike a balance between meeting his needs and having my needs met too.”
b) Impact of the epidemic on unsafe sexual practices:
A majority of partners believed that there had been an increase in the amount of unsafe sexual activity occurring in the gay community over the past few years. Many lamented the rise in bath house attendance and the opening of backrooms in bars and clubs, as they felt that such venues contributed to unsafe activities.
Other participants viewed the resurgence in backrooms, increased drug and alcohol use and unsafe sex as a reaction to the impact that the HIV epidemic has had on gay men:
Backrooms: why are they so popular? What are people thinking? Do they think it can’t happen to them? Or, maybe they think it’s inevitable so why not go out and have some fun.
Many participants noted a feeling of “stress that someday I too will be HIV positive” .As one man stated: “it’s a small step for anyone in this room to become (HIV) positive and everyone is aware of that.”
Still other participants noted that because we do not place a value on becoming old within the gay community, many of us have been conditioned to believe that growing old (and becoming sexually undesirable) is bad. This may contribute to the rise in unsafe sexual behaviours.
When asked what could be done to assist HIV negative gay men in staying uninfected, many of the participants said that there was a need to maintain high visibility of HIV prevention education materials (posters, brochures) as well as outreach to men in venues such as bars and bath houses. Many of the men spoke of the need to develop educational campaigns that identified some of the issues facing HIV negative gay men - grief, the impact of multiple losses, negative outlook towards their future, etc. As one participant stated, “gay men need to have a sense that there is a future, that they have something to livefor.” Others spoke of the need for venues (such as support/discussion groups) in which HIV negative gay men could get together and share with other HIV negative men their thoughts, emotions and fears.
a) Coping mechanisms employed by HIV negative gay men:
Participants were asked to describe the ways in which they attempted to cope with living in a community so profoundly affected by HIV/AIDS. Facilitators probed for mechanisms used (ie friends that they talk to, services they access) and whether or not these mechanisms had a positive or negative impact.
There was a marked difference of coping mechanisms employed by those who participated in this research study: between those who found that their attachment to the gay community helped them to deal with the epidemic and those who found that they needed to withdraw from the community, or felt that they didn’t cope:
How do I cope? I don’t .I get on with my life in a lot of other ways: I go to the gym, the theatre, night school. In many ways I feel like I’m standing outside of the gay community, just looking in.
I don’t really cope. I escape. By joking, or going out, smoking grass. I do more escaping than coping.
I had AIDSphobia when I first came out (as a gay man). But what changed that was being able to have fun with people (with HIV) who are open about their status. To go to specific AIDS Fundraising events. Solidarity. This led me to learn and think.
Many of the participants mentioned that they had spoken with friends/partners as a method of coping. Some of these men had positive experiences when talking to people with HIV about their concerns and fears and felt that they could be completely open with their positive friends. Others felt that they didn’t have anyone they could talk to, and felt extremely isolated: “until today there was no one to talk to. I knew there were others like me, but no one I could talk with” .
Still others stated that they have had negative experiences when they attempted to speak with HIV positive gay men:
When I was dating an HIV positive man, there was always a feeling of moral superiority (on their part) because he knew he was dying. Whatever I said was undermined by their ‘final answer’ .I thought ‘well fuck you, this is a relationship and I have needs that you aren’t meeting and I never brought them up because I didn’t want to upset you’.
When asked if HIV had changed their philosophy on life or their personal belief system, a variety of views were expressed:
My belief system has been profoundly affected. I cherish life… I throw myself into everything. I’ve learned to just shut it off and stop. I’ve learned how to withdraw and not have people notice. I get better at death: that’s the sick part. I’ve toughened myself up. It’s changed my perspective in some very personal areas of my life.
I have a stronger belief in an afterlife - the people who have died are still with me. I talk to them in my dreams. It’s changed my belief in an afterlife. Whether it’s part of me or what, I don’t know. It’s opened my mind in those areas.
I think it (HIV) shaped my philosophy on life. I came out after HIV was around in Toronto. It was definitely an influence. There was always an expectation of grouping up, getting a partner. But HIV is so unplanned. It made me realize the unpredictability and precariousness of life.
b) The role of ACT and other AIDS Service Organizations:
When asked what ACT and other community organizations could be doing to better support HIV negative gay men, it was interesting to find that most of the participants were unaware of ACT’s existing support services that can be accessed by HIV negative gay men (ie one-to-one counselling, mixed status couples support group etc). Most AIDS organizations are not perceived as places where the uninfected can access service. Statements such as “so far, AIDS organizations seem focussed on positive people” and “if I didn’t know somebody here at ACT, I wouldn’t have come here for support” were common.
It is important to note that many of the participants stated that when they see ads in XTRA! from ACT promoting programmes and services, these men make the assumption that these services are for HIV positive individuals, and so they do not read the contents of the ads. Many of the men stated that when they saw the ad in XTRA! for this focus group, it “jumped out” at them because it stated very clearly that it was for HIV negative gay men.
Participants felt that ACT needs to better communicate the services it currently provides to the uninfected:
The services already here, like the Hotline, should be publicized and made available to the whole community rather than just for people with HIV. Maybe HIV negative people don’t think they require the services, but we need to let them know that it’s OK for them to ask for support. We’ve been saying how fortunate we (HIV negative people) have been for so long, but we’re also unfortunate. These services are here, so come and access them.
Some of the participants expressed guilt over accessing services at ACT, as though they would be taking services away from people with HIV. Several felt that ACT and other groups would need to “tread carefully” in providing services to HIV negative gay men, so as not to be perceived as diminishing services for people with HIV/AIDS.
The most common suggestions for services for HIV negative gay men were support groups and one-to-one counselling. It was felt that HIV negative men needed to have a place in which they could talk openly about their issues and concerns with other HIV negative gay men:
There’s a need for specifically negative groups, where people are only negative, to talk about experiences… or say the things you don’t say because someone who is HIV positive is there and they negate what you have to say.
I want to see weekly HIV negative support groups for negative men. At people’s houses even - outside this building. This building is all AIDS related. I want something social, too.
Participants believed that ACT could, and should, be offering more support to HIV negative gay men and facilitating opportunities for HIV negative men to come together and share their feelings and experiences in a non-judgemental environment.
1) The Gay Men’s Health Promotion Team, working in conjunction with other relevant Staff and Teams, ensure that the issues facing HIV negative gay men are made known to agency staff and volunteers.
2) The AIDS Committee of Toronto develop a comprehensive communications strategy to clearly promote existing programmes and services that can be accessed by HIV negative gay men.
3) A series of Support Groups specifically targeted to HIV negative gay men be developed, promoted and implemented by April 1, 1997.
4) An educational print campaign be developed to raise awareness of the issues facing HIV negative gay men. Such a campaign may be used to promote existing/new services for HIV negative gay men.
5) An educational initiative should be undertaken to address the lingering negative perceptions of HIV positive gay men.