The Undetectable Problem: Trauma and Adherence (Part 1)

Keiko Lane
Keiko Lane

I often hear about the anxiety my HIV-positive clients feel about achieving an undetectable viral load: Sometimes it comes up as a New Year's resolution, sometimes as a birthday wish. Sometimes it's a goal set, after which clients bargain with themselves that they'll begin dating again.

As a psychotherapist who works with people living with HIV and someone who lived through the loss of much of my community in the years prior to antiretroviral therapy, I worry about the hopefulness, the potential disappointment and defeat of that goal.

Let me be clear: I support my clients and my friends who can achieve viral load undetectability, and I cheer for them when they stay that way. But I also worry that when we cheer so loudly for such a narrow goal, we forget to relentlessly name the complexity and intersectionality of context.

Not everyone can get to undetectable. And not everyone who does stays there. My fear concerns who gets left out of the conversation about the possibilities and meanings of survival when undetectable signifies success.

Read: The Undetectable Problem: Dating, Sex and Criminalization (Part 2)

Who Gets Left Out?

For the past few years, I've given trainings about the psychological impact of long-term HIV survival and generational differences in the cultural experience of HIV. At these trainings and dialogs, social workers, psychotherapists and nurses have told me stories about young people they've worked with who hope to test seropositive.

These young people imagine that they'll have access to HIV-related housing and health services. In their experience, just being underresourced young people (most of them gay, genderqueer and/or transgender, many of them sex workers, many of them people of color) has left them without adequate access to housing, health care and nutrition.

I've heard these stories many times. These young people have said: "It isn't a big deal. Other than the pills, everyone says you'd never know you were sick."

How did we get to this place? This is evidence of a systemic lack of access to basic care. Once they are diagnosed, these young people are also among those more vulnerable to viral load instability because of their multiple locations of targeting and stigma and the unpredictability of the environment in which they do their best to survive.

The lived experience of bodies moving through the world is deeply informed and shaped by social and cultural context. We shape ourselves to fit into or push against the spaces allotted to us by the systems in which we live and struggle for survival.

Cultural factors affect individual risk and resilience. For underresourced people living with HIV, those factors include consistent access to housing, nutrition, medication and practitioners who listen to, believe and support them, as well as an embodied sense of safety, security and community.

In this context, viral load blips, spikes, rises and symptomatic HIV have to be seen and treated as failures of the system, not failures of the individual. But our current language, which centers on personal responsibility -- and for some, a false promise of personal mastery of health -- minimizes the importance of the context in which people living with HIV struggle to seek and maintain access to care.

Post-Traumatic Plague Syndrome and Long-Term Survivors

As I've listened in my psychotherapy practice to the experiences of long-term survivors of the plague, I've started thinking about a cluster of psychological symptoms and distress that I refer to as "post-traumatic plague syndrome," which is something like PTSD (post-traumatic stress disorder), but specific to the cultural experiences surrounding HIV/AIDS.

The profile looks something like this: dealing with the effects of more than 20 years of toxic AIDS medications; fatiguing from years of community organizing, activism and struggles to survive; outliving most of one's community; and, having lived through the worst of the plague and the years before any effective treatment, when almost everyone died and everyone expected to die, rightly fearing for one's life.

Those of us who were then (and those who remain) seronegative, suffer similar emotional struggles from watching as our loved ones struggled and died. Among the criteria for a diagnosis of PTSD are having experienced, witnessed or been confronted with an event or events that involve actual or threatened death or serious injury, or a threat to the physical integrity of oneself or others. In reaction to that stressor, a response involving intense fear, helplessness or horror. Intrusive recollection of the event(s). And, in the diagnostic criterion category of avoidant/numbing behavior, a possible sense of foreshortened future.

With this framework of post-traumatic plague syndrome in mind, the way that long-term survivors are stigmatized and left out of the conversation about viral load detectability is different from the experiences of those who are younger and more recently diagnosed.

Some long-term survivors -- those who were diagnosed and often symptomatic in the years prior to antiretrovirals -- may not be able to get to or maintain viral load suppression. Some of my friends and clients report such devastating long-term effects of the toxicity of early HIV drugs that their bodies now feel fragile and altered from the pressures of multiple opportunistic infections and the psychological and bodily impact of decades of grief and traumatic loss.

They now experience community shaming because of their erratic viral loads and the rise and fall of their T-cell counts. Their experiences remind us of the most treacherous parts of the plague: It is still an unstable, shifting location. It is not over.

We want to believe that undetectable is a static location. We want to believe in the possibility of relief. We want to believe that once undetectable is reached the struggle is over and one can rest. But that's the most insidious part of the psychological trauma of the plague. There is never an after. We live in the context of loss.

For long-term survivors who are seropositive, even when viral loads are suppressed and health is good, as is now the case for many of my friends and most of my clients, years of relentless loss have left a nagging sense of living on borrowed time.

When we perpetuate the idea that everyone who is seropositive can get to undetectable, we are encouraging those who can't achieve undetectability to disconnect from their bodies and feel that they have failed themselves and their community. This only serves to increase internalized stigma.

The Problem of Adherence

I have complicated conversations about medication adherence with my friends and colleagues who are health care providers. These nurses and doctors often have a hard time finding patience with people living with HIV who struggle to take their medications.

In my roll as psychotherapist, I have the space to sit with people living with HIV and help them make sense of their bodily and psychological experiences. We explore what it means to have survived thus far with or without their cohorts.

One question that comes up repeatedly is about the complexity of why people wouldn't want to or be able to adhere to medication, or why it wouldn't be in their psychological best interest to do so. Sometimes long-term survivors feel burnt-out and desperately need a break from the 20 or 30 years that the plague has defined their daily bodily rhythms.

Sometimes they take breaks from medication because they don't believe in a future or are deeply ambivalent about the possibilities of their future without the presence of those they have lost.

My clients who have immigrated to the Bay Area from the Global South and other parts of the developing world, including southern, urban poor and rural parts of the U.S., have pointed out that both access and adherence involve assumptions of privilege.

To even have the option of medication adherence, one must have financial access to drugs and medical care, and consistent access to health care providers who are culturally nuanced and medically updated about the constant shifts in understandings of medication research and protocols.

And to have safe access to medical care and medication and the ability to communicate freely about sex practices and desires with a medical practitioner, one must be free from the fear of stigma-based criminalization.

Keiko Lane, M.F.T., is a psychotherapist and educator in Berkeley, California. She writes and teaches about the intersections of queer culture and kinship, oppression resistance, racial and gender justice, HIV criminalization, reproductive justice and liberation psychology.