The phrase “health disparities” is a clincal or academic way of saying that people in marginalized communities are more likely to die, due to factors outside their control. It means that merely living in a certain zip code or having been born to a certain race can place a cap on one’s life.
Those at elevated risk for HIV sit at the intersection of multiple marginalized identities. The minority stress theory states that those from marginalized communities experience a higher level of stress than others, due to daily discrimination. This stress plays a large part in creating a lot of the health disparities that exist among marginalized groups, namely LGBTQ communities and communities of color.
The history of stigma and shame that has been projected onto those with HIV adds a higher level of stress to the lives of those in these communities who are living with HIV. Despite this, most HIV prevention and treatment plans leave trauma unaddressed.
There is noticeable overlap between which populations have elevated levels of trauma and those at higher risk for HIV infection. Folks at higher risk are subjected to systemic inequality based on their race, gender, and sexual orientation, which causes chronic stress. Remaining at this elevated state is a major barrier to immune system health, treatment adherence, and long-term wellbeing among people living with HIV. It is essential that HIV care, both prevention and treatment, are based in trauma-informed care. Addressing and unpacking trauma is critical to long-term health.
Long-Term Trauma and Marginalized People
Within the U.S. alone, over 70% of the adult population reported experiencing trauma at some point in their lives—and that’s just from those who feel comfortable enough to report. Trauma has many sources. It can be a specifc event, but it can also be systemic discrimination and hate projected onto those with marginalized identities. Sexual minorities and communities of color face stressors specific to their identity, such as homophobia, racism, and genital-related shame. These stressors act in the same vein as stressors caused by traumatic events, and place folks in these communities at a higher stress rate than others. In between economic disenfranchisement, being subjected to macro and microaggressions, and the threat of random acts of violence, chemical signals related to cellular stress pathways are constantly flowing within the bodies of queer, trans, and Black and Brown folks. These stressors are a significant driving force behind existing health disparities: Internalized racism has been linked to abdominal obesity—a leading contributor to heart disease and diabetes. Racism, misogyny, homophobia, and transphobia also put folks at increased chance of developing depression and anxiety and forming unsafe coping mechanisms for the pain. Even as more people understand the impact of trauma, the daily life of those most at risk rarely allows for the time or resources to address it.
Trauma and HIV
Trauma is not solely a mental experience—to account for the anticipated danger associated with trauma, the body shifts from its normal physiological processes to “fight or flight” mode. Chronic bouts of stress change the body at the cellular level, resulting in cell deterioration, elevated inflammation, and immune suppression. Long-term existence at this state can lead to other chronic health conditions and often magnifies the severity of existing conditions, such as HIV. In the U.S. population, it is estimated that as many as 64% of those living with HIV meet the criteria for PTSD.
“Learning that you’re [HIV] positive triggers the [same] chemicals that your brain floods your body with during fight or flight responses. The chemicals tell your brain you are in danger, because you associate HIV status with death, illness, discrimination, all these things that [indicate] danger. And that reaction, that is trauma,” commented Maisha Davis, LCSW-C, director of the Social Work and Outreach Department at Chase Brexton Health Care. The history of stigma and shame as it relates to HIV, particularly that surrounding folks within the LGBTQ community, creates a perfect storm of anxiety and stress, much of which goes unacknowledged during treatment conversations.
The stigma of HIV, and the discrimination faced by those who are positive, has been traumatizing to many, and feeling the weight of this history can be heavier than the diagnosis alone. It’s no longer solely the virus one is coming to terms with, but the idea of tackling the surrounding trauma, pain, and stigma that an HIV diagnosis represents. This could feel unbearable to anyone, even those with limited life stressors. Unfortunately, previous life stressors don’t disappear once a positive diagnosis happens, especially for marginalized communities. The historical trauma of this disease combines with one’s individual trauma and creates even higher rates of fear, depression, and anxiety.
Chronic stress has been proven time and time again to detrimentally impact the immune system. Higher instances of distress among those with HIV significantly increase the likelihood of opportunistic infections and an AIDS-related death. This same study also correlated higher instances of trauma with twice the all-cause death rate among U.S. persons living with HIV. Follow-up studies have gone on to demonstrate that recent stressors caused by daily discrimination, income instability, and shame as they relate to one’s identity heavily influence fatigue levels, antiretroviral therapy failure, and daily functioning.
Shame is an incredibly available emotion, one that plagues members of marginalized communities in a very specific way. Society has created a system in which members of these communities have waves of shame and guilt projected onto their mere existence, and through the history of the HIV epidemic these same identities have come to bear the weight of shame that HIV does.
There’s also the economic piece: While programs like the AIDS Drug Assistance Program exist for HIV prescription coverage, and certain clinics have sliding fee scales, HIV treatment can still be incredibly expensive. Many folks at the highest risk for contracting HIV, namely transgender women and Black gay men, are also at increased likelihood for being at the poverty level. For many living with HIV, inconsistent access to housing, economic instability, and unprocessed shame around one’s identity and positive status are barriers to coming in for a medical appointment.
There’s also the common threat of being retraumatized upon arriving at the clinic. There’s a long history of communities of color and those within the LGBTQ community, especially transgender folks, receiving horrific treatment at the hands of health care professionals—this mistrust and wariness translate to HIV care as well. “There’s a large capacity to hurt,” comments Carmen Landau, M.D., trauma-informed care specialist and practitioner at the Southwestern Women’s Options clinic. “If you are blindly providing care without understanding [trauma], you can create more harm, even if you are doing the thing they want you to do.”
Trauma-Informed Care Is Essential
If elevated levels of trauma are linked to immune suppression and treatment failure, why not address the causes of trauma as part of the care model? Addressing one’s own mountain of personal, intergenerational, historical, and diagnosis-related trauma is hard. It’s even more difficult when you don’t have the resources or space to do so. There’s a clear connection between experiencing trauma and HIV, yet few spaces exist that give communities most impacted by trauma the resources or support to heal from these experiences.
With the increase in research on the detrimental effects of trauma, there’s come a need for focus on trauma-informed care, a care model that’s been demonstrated to benefit the physical and mental health of those battling chronic health conditions. “It’s an incredible opportunity to pleasantly surprise someone and do anti-shame work while they are in your care. And it can be transformative,” comments Landau. “We must challenge what we as providers may see as annoying or unnecessary behaviors and begin connecting them to manifestations and coping mechanisms of trauma from the abuse and exploitation of marginalized communities.”
Significance of Addressing Trauma
Having to constantly defend your identity is traumatic. The aspects of yourself that connect you to this identity become sources of stress, and lacking the space to process this stress is a hindrance to health and fulfilment. There are layers to caring for someone living with HIV that need to be addressed beyond the basics of HIV 101.
Part of HIV treatment means finding ways to acknowledge both previous trauma in addition to the layer of trauma that an HIV diagnosis often causes. Trauma-informed care allows for a comprehensive and holistic means through which to be treated and has been proven to improve health. To effectively help those at the highest level of risk, we must create programming in HIV treatment that acknowledges not just a fraction, but all of their needs.