“People get what they deserve,
Time is round and space is curved,
Honey have you got the nerve
to be Queen Elvis?”
– Robyn Hitchcock, “Queen Elvis”
Once I was diagnosed in 2014 I knew right away that I wanted to advocate so I’ve been out about my HIV-positive status from the get-go. I objected to living a lie, which I equate with living in an ongoing state of fear. It didn’t take me long to realize that HIV is a minority disease, that my fellow human beings were potentially more dangerous to me than my HIV ever would be and that hatred, stigma and dogma were the reasons for that.
This knowledge hurts – high rates of suicide have been seen among people living with HIV since the beginning of the epidemic and stigma has often been cited as a major cause of depression and suicide among the gay and MSM populations as well as the HIV community at large. But although HIV positive gay and bisexual men (GBM) continue to struggle with the pervasiveness of HIV stigma, and though these high rates of suicide have remained high even in the era of effective treatment, not much is known about what effects stigma is actually having on our health and more specifically, the relationship between stigma and suicide.
As a matter of my own self-care and advancement, I’ve needed answers about not only my condition, but about our condition as peers. In the hope of finding those answers I turn to studies like this one, entitled “Stigma and suicide among gay and bisexual men living with HIV”, by Olivier Ferlatte, Travis Salway, John L. Oliffe & Terry Trussler.
Say the authors: “The purpose of the study was to detail suicide ideation and suicide attempts among gay, bisexual and MSM living with HIV, and the extent to which these experiences were associated with enacted HIV stigma.
The associations between suicidal ideation and suicidal attempts and four measures of HIV stigma were measured: social exclusion, sexual rejection, verbal abuse and physical abuse.”
Elsewhere in the article, the authors define HIV stigma: ““HIV stigma is a complex social and structural phenomenon that exists when labeling, stereotyping, status loss and discrimination occurs among people living with HIV. The mechanisms through which stigma may be experienced by PLW include:
(1) Enacted stigma, which refers to discrimination experienced from others;
(2) Felt stigma, which is the awareness of negative social perceptions and the expectation of discrimination; and
(3) Internalized stigma, which refers to the self-endorsement of negative beliefs, views and feelings.”
The study is based on a sub-set of data from the 2014/2015 Sex Now survey– an online anonymous survey of Canadian GBMSM. Of the 7872 who completed that survey, 673 of the respondents indicated that they were HIV-positive and that is the sample on which the study is based.
Respondents were asked to report on such characteristics as age, sexuality, income, education, ethnicity, and living environment. They were also asked whether in the last 12 months they had either considered or attempted suicide. The respondents were then asked to report if they had experienced any of the four forms of enacted HIV stigma within the last 12 months.
Say the authors: “While a recent Canadian study found that HIV-positive individuals regardless of sexual identity were three times more likely to die from suicide than the general population (Gurm et al., 2015), the differences found between HIV negative and HIV positive men in this study were less dramatic. Nonetheless, the rate of suicide attempts among GBMSM-LWH was 1.5 times higher than that of the HIV-negative respondents.
"The rate of recent suicide attempts among GBMSM-LWH in this study was over 12 times the rate reported among the general population of Canadian men (Public Health Agency of Canada [PHAC], 2011)."
The authors suggest that this might be explained by the already elevated suicide prevalence among gay and bisexual men by comparison with heterosexuals. The rate of recent suicide attempts among GBMSM-LWH in this study was over 12 times the rate reported among the general population of Canadian men (Public Health Agency of Canada [PHAC], 2011).
“Theories of stigma predict that enacted stigma exacts a significant toll on its targets’ mental health.
“The authors conclude that HIV positive GBM experience significant levels of stigma that are associated with heightened risk for suicide. The findings affirm the need for targeted interventions to prevent suicide amid public health efforts to de-stigmatize HIV and all mental illness.
“The current study adds further evidence of this detrimental effect by demonstrating its association with SI and SA in a large sample of Canadian GBMSM-LWH. This is concerning given that approximately 60% of the respondents experienced at least one form of enacted stigma. More specifically, this study found that the greatest association was observed when the cumulative effects of multiple forms of stigma were considered. Further study should extend beyond enacted forms of HIV stigma to investigate the relationships between suicide, enacted stigma and external and internalized stigma, as those constructs have also been theorized as affecting one’s psychological health (Herek, 2007; Meyer, 2003).”
Please note that I’m presenting this as a lay person, for lay people so I’ve skipped most of the methodology and the worst of the research language so that you won’t have to. But if you do want to check it out, the full study can be found here.
The first thing I was struck by was the lack of other research on the topic of stigma as it relates to suicide among this (my) population. And this despite the fact that stigma is everywhere talked about within our community. And the contemplation of this several-headed enemy is in itself painful to any affected party ( I can only take so much in one go) but I believe we owe ourselves the effort to understand.
In that regard this study goes some way toward filling a relative void, not just in terms of research, but of moving this conversation beyond the usual well-meant platitudes and into a better understanding of just what it is we must come to terms with. The authors have done our community good service here.
Another thing that struck me was the observation that the greatest association between stigma and suicidal thoughts or attempts occurred "when the cumulative effects of multiple forms of stigma were considered." It might seem like a no-brainer to anyone going through it that the more stigma they experience, the greater the effect on their lives, but it's good to have research that confirms it. It reminds me a bit of the "kindling" theory as it relates to Bipolar Disorder and Epilepsy.
A very wise man who may or may not have been Gus Cairns (I’m unable to find the quote anymore) commented recently to the effect that HIV has been society’s way of condemning the sexually and behaviorally non-conformist. That’s about as succinct as it gets, I’d say.
Now, two and a half years on from my diagnosis, I can’t really say that I’ve personally experienced any more stigma to date as a result of being open about my HIV status – as far as I know, at least. Then again, I don’t tend to associate outside of HIV circles all that much these days.
But as I look about me, I can’t help noticing that wherever in the world I look, people living with HIV are at the bottom of the food chain.
And while there is rich depression fodder to be found in that if I choose, my own depression is not particularly HIV-specific – at least, not usually. It’s more to do with being a survivor of long-term childhood sexual abuse and a bisexual male in this culture and I’ve been dealing with it since childhood. For me, the HIV stigma has always felt like merely more of the same. I guess I’ve just been lucky so far.
Fortunate for me that I live where I live in the world. It means, among other things, that I cannot be legally tortured in order to find out if I was gay, as could be the case if I lived in Kenya. Or if I were a trans woman, I could be dragged into the street in broad daylight and beaten to death in front of cheering, laughing onlookers, as recently happened to Dandara dos Santos in Fortaleza, Ceara State, Brazil. You can see video of the attack on Facebook – I did and it’s been keeping me up for days. The ripple effect of the horrific. Of stigma. Running through me, through us, like a barbed wire fence.
Connecting us all.
So maybe you begin to see why I say I can only take so much in one go. I find that the contemplation of this beast entire leads inevitably to the contemplation of the myriad grievances real and imagined, held against us by our legions of detractors and that turns out to be a bit er… stigmatizing after long enough.
And though it must be done, still we all know the importance of self care.
So to all my “sexually and behaviorally non-conformist” sisters, brothers and colleagues in HIV, this sincere note of thanks and validation: thank you for being who you are. For being creative. For not accepting the first lines you were forcefed, but rather finding your own way, finding the courage to take the freedom to be who you are. You make the world so much better. There isn't a speck of this stigma issue that isn't about freedom and the individual's right to be the individual they are.
We caught a virus, but so what? Life and the world and we ourselves are still very beautiful. I regret nothing, I repent nothing and I’m quite sure that at least on some level I love you all, so for whatever it's worth to you, thank you.
The complete article, “Stigma and suicide among gay and bisexual men living with HIV”, by Olivier Ferlatte, Travis Salway, John L. Oliffe & Terry Trussler can be read here.