Bob Leahy: Thanks for contacting me to speak about this, Claudia. Tell me first about your own situation in as much detail as you wish.
Claudia: It’s been 23 years since my diagnosis and then two years ago I was diagnosed with manic depression, or bipolar disorder.
Describe the symptoms Claudia, for those who don’t know.
In my personal experience I have dealt mostly with the symptoms of depression, but two years ago I started having signs of something else. I couldn’t sleep, life felt like it was going by too fast and my anxiety was through the roof. None of the antidepressants were working for me and I was not understanding what was happening. So I got diagnosed through a doctor at St Mike’s (Hospital in Toronto) and started getting an understanding of what it was. How bipolar is different from depression is that you experience mood swings – sometimes you feel depressed and down and sometimes you have bursts of energy. I have people who know me in the community, when I used to tell them I was depressed, they were surprised because I was likely in a period where I was feeling energetic or simply feeling well.
I was going to mention that, Claudia because I’ve known you for a long time and you have always given me the impression of a happy, well-adjusted person. Is that because you put on a face?
Well, I think some of that is just coping. I feel better when I’m in social settings; I feel happy when I’m around people and sure, you and other people see that side of me. I’m smiling and I’m hugging everybody and giving off this great energy, for the most part I’m just happy I’m finally socializing. Some of that is because I’m not going to show how depressed I’ve been in public while I have been isolating at home alone and feeling deep sadness.
So how does this condition impact on your life in general?
The primary impact has been isolation and that’s especially interesting when you are a leader in the community. The perception is probably that I’m a snob. But what has happened is that I’ve isolated myself to the point that I feel alone when I really am not. I have many people in my life and many friends and a great family that support me. But when you are feeling depressed to the point that you don’t want to move you forget you’re not alone, and by the way not everybody understands that is something that is happening in the brain… and it’s not easy to just snap out of it.
It’s a chemical imbalance.
Right, that is convincing you your life is horrible or that you yourself are horrible. So for the most part what I have done is that as soon as I’m home, it’s my sanctuary and I isolate. Some of that is good in that it’s down time and self-care. But what I found is that you get caught in a trap and that isolating too much is not good for you and you end up being accustomed to being alone and the negative thinking sets in.
Is that a common response?
It definitely is – and I’m seeing it far too much in this (HIV) community. I have been in touch with a lot of people that have been wonderful enough to confide in me about the really difficult times they are going through. All of them have one thing in common – and that’s isolation. So something is happening with people’s mental health. A lot of them are long term survivors. I feel like there is something that we are not talking about and I feel that the medical community is missing something. I know what is happening on a personal level because I’ve experienced it but I’ve been reluctant to talk about it for the fear of being stigmatized.
Well we know that mental health is highly stigmatized so there’s a reluctance to admit there is something wrong with your head, right?
Right, even in the HIV community there is so much stigma around it. Meanwhile we are not making the connection that so many people have had to check into a mental health facility or have developed addiction issues in order to cope with what is happening in their head, who stop taking their medication. Something is happening.
So are you connecting the dots between those symptoms and, say, being a long term survivor and the trauma we have experienced, or the long term effects of either HIV itself or HIV medications? I mean looking at root causes, there may not be science on any of that but what’s your take on it?
Well with the more than a dozen people who have shared with me that they are going through this, they are all long term survivors, so there is that connection. Some people are suggesting it’s the medications. That theory doesn’t necessarily work for me because I didn’t start treatment seriously until about two years ago, so in my case I think it’s the effects of HIV attacking the brain while I was off meds. But we really don’t know – and that’s my frustration: why don’t we know?
You probably know that the Ontario HIV Research Network (OHTN) has done some work tracking the incidence of neuro-cognitive impairments in a large cohort of people living with HIV, and they found a 52% prevalence rate. I’m not sure how depression figures into that measurement, because it covers a variety of conditions - but we know something is going on.
Yes, I appreciate the work that is being done by the OHTN and I’m actually part of it. I’m a peer research assistant in the HEADS UP Study. I think they are 100% on to something in regards to cognitive health, but there is a trend I am seeing beyond that which is specific to mental illness and people are suffering; further research about that would be awesome.
But what about solutions in terms of identifying the problems people are having and dealing with them? I mean in many cases, but not all cases, depression is treatable through a combination of pills and talk therapy.
Yes, talk therapy and meds are important, however, a lot of it is about being able to speak to and confide in someone in the HIV community. But that’s where my concern lies. The stigma around having mental health issues is the barrier to people reaching out and say “hey, I’m experiencing this and I’m scared”. There Is so much shame and so much judgement that has been happening in this community for a very long time – and it has prevented me and others from speaking up. I addressed the issue in the CATIE article for the Positive Side. I think it is obvious that medical intervention helps but before that we need discussion on mental health ad nauseam in the community. Any time there has been a change of direction or momentum it’s because it’s constantly being talked about in the HIV sector. I feel there has to be some action at the local or national level that focusses on what is happening with so many individuals, many of us are active leaders in HIV community.
I feel there is a correlation between stress and overextending ourselves with countless projects and commitments in the community that many of us use to cope with what is happening with our health. Right now it’s difficult. If I come out publicly and say “I’m bipolar” as I’m doing here, will I ever be employable again? How are people going to trust me? It’s like a shot to your credibility. And who is going to want to have anything to do with me? We are dealing with a stigma within our own community about mental health. I was comfortable with telling people I had depression: it’s much harder to tell people you are bipolar. It shouldn’t be that way as people need to see that there is a spectrum in the mental health continuum and many of us fit somewhere in that continuum.
Ok Can we talk about solutions like the role of service providers, Claudia?
Well I think you probably know that whether or not you are HIV-positive or not, the ability to access mental health services is a problem. There are usually waiting lists and a bureaucratic process to go through to get in. But privilege and social location plays a big part on access to services. For me, I knew where to go because of the connections I’ve made to health services in my time in the AIDS movement. But when we are talking about maneuvering through the system it was easier for me to be able to get the help I needed in urban Toronto than it has been to find those services for others. And if you are living outside of the downtown core or in rural Ontario it must be worse. It’s one of the reasons I think that so many people are falling through the cracks.
What about the integration of HIV services and referrals to the mental health system. Is that working? I think in Ontario there was effort a few years back to train AIDS Service Organization support staff to recognize mental health issues in their clients and to refer them?
It’s 100% needed. There are cultural barriers - there have been, for me to accept my mental health diagnosis. In my (Latino) culture I have a close relationship with my family and it was still very difficult to accept. Just like HIV. I have to deal with the stigma and cultural attitudes around me dealing with mental health issues.
So are you saying that the mental health issue is a more difficult challenge?
It’s another layer of stigma we have to add on, another obstacle that I face that affects my Social Determinants of Health. But my question now is why at 44, has it suddenly become a problem? But I think the more we talk about mental health and its connection to HIV and we start deconstructing the attitudes and the stigma which exist in our community, the more we will prevent people from isolating and getting worse.
Yes, and one interview like this is good but it has to be an extended community conversation right?
Yes, but it’s even more effective when leaders in the community are saying “I’m dealing with mental health issues”. I know it’s not easy to come out like this. Nor that everyone can do that. But let’s start talking about this more openly in order to break down the stigma that exists in order to improve the lives of people living with HIV.
About Claudia Medina: Claudia Medina has worked and volunteered in the HIV/AIDS field for 20 years. She was diagnosed with HIV in 1994 and began her journey in the HIV/AIDS sector by volunteering her time as a Board member for organizations such as The Teresa Group and Positive Youth Outreach. She has done work in partnership with Toronto Public Health for several years in the sexual health program and as a community representative. She has been employed in organizations such as: Voices of Positive Women, The Toronto People with AIDS Foundation and Prisoner’s with HIV/AIDS Action Support Network. Claudia is the co-founder of Latinos Positivos; the only ethno-cultural organization that exists by and for HIV positive Latinos in Ontario. Recently she worked as a placement student at the Ontario HIV Treatment Network as the Engagement Coordinator for the HEADS UP! Project. Currently, Claudia is on the Board of the International Community of Women living with HIV North America.
About HEADS UP! HEADS UP! (2015-2016) is a CIHR and REACH funded study bringing together members of the community, health care providers, and researchers to generate and translate knowledge about HIV-associated neurocognitive disorder (HAND).
HEADS UP! (1) explored the lived experience of HAND using ethnographic research methods to help inform clinical definitions, guidelines and interventions for HAND; and (2) provided participants (and their care providers) with knowledge about their cognitive status—including strengths and weaknesses as well as compensatory and restorative strategies to manage cognitive impairments, if present.