We need to talk about HIV and mental health

Back to Life, Positively 2017 Index…

Every so often, HIV will make the news, and, sometimes, a story about mental health will break through the noise. Rarely — if ever — are stories about the intersection of mental health issues with HIV status heard. Individuals living with HIV have a far greater likelihood of experiencing mental health problems than the general population. To explore this connection and hear the stories of HIV positive mental health in North Carolina, qnotes spoke with local leaders who work directly with HIV and mental health.

Sarah Yum, LMFT, is the mental health specialist with RAIN in Charlotte, N.C., and she thinks the struggle with conversations about HIV and mental health starts with a lack of education. “A lot of people grow up uneducated about the disease. Unless you know someone who is positive or if you are at risk of becoming positive, there is not a lot of information unless you go out and hunt for it yourself.”

A common thread throughout the stories of people living with HIV (PLWH) rang true with Sarah’s words: their positive status and feelings of isolation had come about through misinformation and lack of education. Yum told the story of a cisgender, straight woman (this demographic information noted here to break stereotypes of who is affected by HIV) who had recently received an HIV positive diagnosis. This client’s story reflected that of many HIV positive clients. “How did this happen to me?” was her question.

Yum worked with the client through her history, including family members lost to AIDS, and came to understand that a pent up anger and sense of shame surrounding her identities and HIV status had lead to the aggressive behavior the client had displayed. To the client, HIV held such a stigma that she was unable to comprehend where her own sense of self could mesh with this diagnosis. Yum worked with her through stories of incredible resilience, but also suppression of grief, loss issues and “self-identified shame.” Yum helped her client learn “how to write an ending to a chapter, so that [she] can start writing the beginning of a new one.” Developing one’s story, to Yum, is essential to moving through the shame associated with trauma.

Traumatic experiences, both related and tangential to clients’ HIV diagnosis, are often at the root of mental illness for PLWH. House of Mercy, a sponsored AIDS ministry of the Sisters of Mercy of the Americas and Sisters of Mercy South Central Community, is a family care home in Belmont, N.C. able to serve low-income individuals and communities living with HIV and AIDS. Director of Nursing Shirley Stowe discussed how House of Mercy’s clients come to them, often via complex backgrounds rife with stigma and prejudice from family, friends and their communities.

“The majority of people are doubly or triply diagnosed — meaning they have mental illness or issues with substance abuse along with their HIV status,” Stowe shared. “When someone moves into a group setting, such as House of Mercy, we recognize that people come from all walks of life…There’s a certain amount of walls built up with people.” Stowe and Dr. Sally Duffy, a retired psychotherapist who volunteers at House of Mercy, work with residents to help them feel secure and as if they have a place to thrive at House of Mercy or, in the case of hospice care residents, somewhere to live out the remainder of their lives.

One resident, who had been out of care for multiple years, came to House of Mercy in March of this year to live out the remainder of his life. He was an active fisherman whose main mode of transportation had been a bicycle. Though it was not typical for House of Mercy residents to have bicycles, Stowe made an exception for this resident to ensure his comfort. Even though he was at House of Mercy for just over half a year, Stowe says that he passed away knowing “he was loved, and he had wanted to die somewhere knowing that he was loved.”

Stories like this resident’s are important to hear because of the action they can inspire within those currently living with HIV. “People are carrying that old idea about HIV and it frightens them,” Duffy said. “It is no longer a death sentence.” Though HIV is a chronic disease, it is manageable and people can live long, expansive lives if they get themselves into care. What exactly care looks like is different for every person, and, as Stowe put it, “Until the person themselves is ready for care, there’s not a lot that we can do other than keep offering.” This perpetual reminder of resources and networks of encouragement is one of the most important ways that allies to PLWH can articulate and demonstrate their support.

Duffy and Stowe believe that allies to PLWH should be reminded to allow space for the PLWH to talk about their struggles and experiences or to let them be silent. Being an ally in these moments presents itself as breaking down misinformation with kindness and compassion and offering oneself as a validating ear to PLWH. Proposing resources and seeking out educational opportunities for both allies and PLWH can be a liberating and insightful way to strengthen communities and develop bonds.

Hector Salgado of the Alliance of AIDS Services-Carolina in Raleigh, N.C. echoed the search for a sense of community among those at risk for HIV or those living with the disease. Salgado told stories of people who are unaware of the interplay of their HIV status and its impact on their lives and mental health. “If you can’t take care of yourself, you’re not going to make the best choices that affect other individuals.”

Salgado continued, “Without the access to professional counseling or medication, they have no reason to try and become better for themselves or others.” The concept of isolating behaviors and lack of community rang constant as a concern for HIV care providers. When an HIV test result is delivered, the recipient can feel as if they are entirely alone, and this sense of loneliness can factor into mental illnesses like depression and anxiety that are commonplace among those living with HIV. Stories like those shared by House of Mercy and Salgado show the need for support groups and spaces that allow PLWH to be open and vocal about their successes and struggles.

In North Carolina, isolation in regards to HIV status can be further exacerbated by the stigma surrounded the disease and conversations about mental health, sex and sexuality in general. In these times, it is vital that the stories and lived experience of those living with HIV are heard. “We need their voices,” said Shannon Frady, the executive director of Carolinas CARE Partnership. Being LGBTQ in North Carolina is difficult enough, Frady continued, but dealing with intersectional issues of institutional racism, socio-economic status and physical health/HIV status adds more layers of difficulty to the lives of PLWH. “There is stigma at every turn.”

Part of fighting stigma, according to Frady, is educating oneself and others. “It is important to learn the new language; that we are not dirty or clean — we are living with or not living with HIV. This isn’t an infection, it is a chronic, manageable disease.” Too often, this duty of educating others lies with the PLWH. In dating situations, familial relations and friendships the struggle of disclosure can further a PLWH’s feeling of not being understood, and that is where Frady and the other North Carolina leaders in HIV advocacy believe allies should step into the conversation.

“We need to make mental health a part of the treatment. Professional health can help make the adjustment [of being aware of your HIV status] smoother,” Stowe says. Duffy added, “You don’t have to do it alone. There are more resources than you realize. This is not something to be ashamed of.” Allowing space for PLWH to know their value alleviates the mental burden of seclusion and loneliness, which can assist with depression, PSTD related to trauma and other mental illnesses.

Marjorie Storch, the director of development at House of Mercy, says, “The focus at House of Mercy has always been on spiritual and emotional wellbeing.” The care given at House of Mercy can function as a model for other HIV care providers: innovative and holistic care that understands PLWH are also people living full lives outside of their HIV status. Storch, Stowe, and Duffy described House of Mercy as “a very life-affirming place,” and this kind of life-affirming personality is exactly the kind that should be seen in HIV and mental health advocacy.

Salgado described a mural in the lobby of the Alliance of AIDS Services space that depicts a cave with people emerging from its mouth. “The cave was the representation that clients told artists, about how lonely it was coming out as LGBT and how lonely it was coming out as HIV positive. They all shared the experience of a dark, lonely place as what they came out of. If [people who are newly diagnosed with HIV] are scared, lonely or not living the life they want: reach out to one of these organizations [undertaking mental health inclusive HIV care] to live a happier, healthier existence.”

This mural and its impact have been able to unify the diverse, differing experiences of LGBTQ people and PLWH. Frady, Yum and the stories from House of Mercy remind those who are HIV positive and of the impact of unity. Living with HIV is often an isolating and alienating experience, but it doesn’t have to be.

“To these people living with HIV,” Yum says. “I have this to say: I see you and I hear you…one of the best things to say is ‘I see you, and I hear you,’ and I want to walk through this journey with you, not ahead of you, and not behind you, but with you.” That is the reason to talk about mental health and its intersection with HIV status: to heighten awareness among those living without HIV and to remind PLWH they are not alone. Resources exist, communities are there, and if this conversation is heightened, everyone can know, as Yum put it, “We are a community that will not let you go through this alone.”