Mental wellness & people living with HIV: a call-to-action for practitioners, policy-makers, neighbours and friends (Part 1)

I’d like to highlight a presentation I attended a couple weeks ago that made me think about mental health and wellness – especially among people living with HIV – in a whole new light.  The presentation was delivered at our monthly HIV Stigma Community of Practice meeting, an online gathering spot – for people living with HIV, their peers, researchers and service providers from across the country - to engage in dialogue and action on how to end HIV stigma in Canada.

First discussing findings (the “stats”) from Ontario’s implementation of the HIV Stigma Index Study, the presenters segued into staggering personal accounts of experiences that challenge people living with HIV every day.

I left the presentation feeling motivated to dig deeper, so I hopped on a Zoom call with two of the presenters who agreed to elaborate.

In Part 1 of this two-part, new blog series, one-to-one –– candid talks with people about life and HIV –– I got the chance to speak with Lynne – a Peer Researcher with MAP Centre for Urban Health Solutions at St. Michael’s Hospital, working with the HIV Stigma Index study team in Ontario

‍‍‍MC: Lynne, earlier you mentioned that many people living with HIV can be struggling with poor mental health, specifically depression and anxiety, but that it's not always clear whether it's due to a specific situation or event, or whether it's related to living with HIV. Could you explain this further, and why you think it's important to differentiate?

LC: I think that having HIV and the complexities that go with it are almost a traumatic event – that living with HIV is a trauma-inducing experience. And I can see that in, like, the stigma that's faced in the discrimination and the fear that people live with, and how kind of your life is adjusted. But so I think that's kind of one aspect of it.

I think another aspect of it is, is that if you've lived with HIV for a long time, or even if you haven't, the losses that you experience as a result of having HIV are overwhelming. You look at long-term survivors and the loss of their entire communities, their entire social systems, their entire kind of identity…But also like the loss of who you thought you were going to be and the loss of all of the things that that could have been if you didn't have HIV. And HIV just carries so much loss with it that I think that people sometimes don't always see that, don't even recognize that, and it's only until someone says, “wait a minute, don't you miss…?”

People live with depression for so long that it becomes just a normal thing and they just don't recognize it...

I think I think another kind of direction of looking at this, ad this is maybe a little contentious, but if you look at the people who are at high risk of HIV, many are already marginalized and oppressed to begin with. So, the likelihood that they will experience some sort of mental health issue, like depression or like anxiety, is already fairly high. And I hear myself say that and I think that’s so terrible to say that, but I think it’s true. Like how do you be a person who engages in injection drug use – with the stigma, ostracization and the social isolation that comes with it, with the health concerns that come with it, with the risks that come with it – like how do you manage all of that without it having some sort of impact on your mental health?

MD: And what might happen when someone isn’t as aware of what’s going on with their mental health and the impact that HIV stigma may have?

LC: Yeah… I think a part of it is that the way medical treatment is given to people with HIV needs to shift a little bit. I think that instead of people asking their doctor if maybe they might be having mental health issues – I think it needs to shift to an assumption that there are mental health issues…That in all likelihood, people are living with mental health issues as a result of also living with HIV. So, like it becomes an automatic part of a medical visit – it’s like “how are you doing? How are you feeling? Do you have support in your life? Do you have someone to go to if you need something?”

Because I think a lot of time people live with depression for so long that it becomes just a “normal” thing and just don’t recognize it…Maybe because society doesn’t talk about it enough or hasn’t talked about it enough in the last couple of years. And the last thing anyone wants to do is add another layer of stigma on top of it. Because talking about mental health disorders – the term in general, is pretty stigmatizing.

MD: Can you talk more about the potential benefits of having a strong support system?

LC: I think that social support systems are needed by everybody – no matter what. No matter whether you live with HIV or not or whether you have mental health disorders or not; I think everybody in the world needs some sort of social support system. I think if people have strong social support systems, their mental health outcomes are going to be better, the buffering factors with how they deal with stigma and discrimination are going to be stronger – it’s like everything about that person is going to be bolstered by a social support system.

MD: And would you say – in your experience of living with HIV –that you experienced any challenges with building a support system?

LC: Um strangely enough, not until recently. For the longest time I had a really, really strong support system that was very consistent and very … – just like everything. I feel like some old folky saying it but a lot of my social support system – and the key person in my social support system – are now gone. And it’s really hard to build that back up again.

I also think that the AIDS movement has also changed – and I’ve been a part of the AIDS movement in Ontario and pretty active through most of it for 25 years. Now the movement has changed and is not as conducive to being as supportive as it used to be.

MD: What’s different? What’s changed?

LC: I think a lot of it has to do with just basic funding – it’s like what the AIDS Bureau will fund or is able to fund, and what they’re not is different from what it used to be. It used to be that bringing people living with HIV together was very much prioritized, whether it was conferences or kind of social events or whatever. And that isn’t able to be prioritized anymore. Also COVID makes a big difference. Talking with [my peers] over Zoom or whatever, that’s not the same thing. It’s not the same thing.

MD: Yeah that’s really interesting… I hadn’t realized how bureaucratic structures, like funding and government priorities, impacted someone’s social circle.

LC: Oh, hugely, hugely. Just bringing people together cuts down on isolation. And isolation is honest to god what’s killing people. And bringing people together is such a hugely impactful thing – like I can’t even say it enough – even if it’s just for a little while; the boost that it gives is pretty amazing.

MD: And what defines a “good” social circle or social system?

LC: I was really surprised when… Okay, now you’ve seen the Stigma Index questionnaire, right?

MD: Mhm.

LC: So you’ve seen that section where they ask: “do you have someone to help you if you’re sick? Do you have someone to take you to the doctor if you need it..?” That section was probably the hardest section to administer because either people had very positive responses or very negative response to it.

And one of the things that always surprised me – I kind of always had it in my head that a friend is better than a support worker, or a family member is better than a case manager. And what I tended to find when people were answering that, that wasn’t necessarily true.

That there aren’t necessarily levels of useful support. That to most people support is support. And when I asked the questions: “do you have someone to talk to when you need to talk, do you have someone to help you understand a situation”… There were people who answered “yes” all the way down, and when I asked about who that person was, they said “well my case manager, or my support worker at the AIDS Service Organization”.

And to me, I never thought that. I always thought there was kind of a hierarchy. And there may be for me, but for many people, I don’t think there is – I think that support is support and wherever you get it from, is good.

MD: Was that an encouraging discovery? Because I would imagine that in some cases,  not everyone wants to disclose their status to close family and friends, so maybe they’re able to find the right kind of support from other people or in other ways.

LC: Yeah, and that’s a fantastic thing that they’re able to access it because I know lots of people who don’t have personal family or friends that they can talk to about their HIV and yeah… it’s great that they get it from somewhere else.

I think ideally a person's support system would look like a Venn diagram....

MD: So, ending with a final question, I’m curious if you can suggest ways in which “we”, as a community or the general public, can create more inclusive and supportive environments for people?

LC: You know, it’s funny – I always thought of it from the other side, like accessing support – how do you access support? I never actually thought about how to give support or how you provide support for somebody.

I think that support systems just need to be in place. I think ideally a person’s support system would look like a Venn diagram – you know those overlapping circles where one point where lots of them meet.

So you have one circle that is your friends that you meet down at the corner pub to play trivia games with and you never talk about anything really significant. But you see them every week and you have fun every week, and it’s a consistent thing in your life. And then you have friends that also have HIV who you can always call or see them to talk about HIV. And then you have a support group, maybe, in which you attend or a case worker, or a psychiatrist that you talk to…

And then you have all these circles of support that you may not access all the time, but you’re always kind of in one of them. So you kind of spread out your options but also kind of diversify it.

MD: How cool is it to be a person in that trivia group and maybe not recognize that you’re providing support just by showing up.  

LC: And that’s like – you can’t tell someone how to unknowingly provide support but people do unknowingly provide support.

There are so many ways to meet people and I 100% recognize that digging yourself out of isolation and loneliness is an incredibly hard thing, and saying “go out and meet people” is incredibly easy to say – but hopefully if a person is at least that point where they can go out to see another person, I would hope that those systems or programs, or whatever they are, are in place.

And it’s so easy to say, and I know personally that it’s so hard to do, but just find one thing that you’re interested in and go out and find someone else that’s also interested in it.

MD: That sounds like a very positive note to end on. Thank you, Lynne.

Hey reader!

We’d love to hear your thoughts on this conversation between Lynne and Megan. Is there something you’d like to discuss in this one-on-one series on The Positive Effect? Please let us know, hello@positiveeffect.org

Maybe this conversation inspired you to share an experience, a story, or just get something off your chest. The Positive Effect provides a platform for your voice to be heard, and gives an opportunity for the people in your community to show up – two actions that we believe contribute to #thepositiveeffect.

For any questions about how to add your voice to the platform, email us, hello@positiveeffect.org

And for more information about the HIV Stigma Community of Practice or the Ontario Implementation of the Stigma Index Study, email james.watson@unityhealth.to. You can also find more information about the international People Living with HIV (PLHIV) Stigma Index by visiting https://www.stigmaindex.org/