Not Suppressed: Managing Feelings When Undetectable Remains Elusive
"We've got a problem." Those are words I never wanted to hear from my HIV specialist, but that's exactly what he said nearly two years ago when, after an extended period of having an undetectable viral load, mine suddenly climbed into the 400s. "Are you sure you're taking your meds?" he asked skeptically. I was certain I detected doubt in his tone and a smirk on his face.
That office visit initiated a new chapter in my three-decades-long relationship with HIV. During the last two years, despite medication adjustments, my viral load burst from undetectable to 400, then returned to undetectable again before fluctuating and finally stabilizing around 60. At that first visit, my doctor explained that it was probably a spike and that I shouldn't worry. When it persisted for months, he began telling me that some people don't become undetectable but manage quite well. I was not reassured.
I have seen friends and loved ones run out of pharmaceutical options as they gradually became resistant to medications. I, too, have had my share of life-threatening complications and have always fought back to health with commitment and vigilance. But not having the psychological (and medical) safety net of being "undetectable" has reawakened the looming uncertainty of living with HIV, that nagging concern about the future that I had shoved out of my consciousness while undetectable -- made worse when I see others nonchalantly taking their undetectable status for granted.
I wonder why this is happening. I understand that such resistance can occur naturally, although I worry that somehow I am responsible for my situation. I gave up drugs and alcohol 30 years ago. I have incorporated taking my meds into a daily ritual anchored with meals. I carefully inventory my medications to be certain I never run out. I count pills before I swallow them. Could I somehow have made enough mistakes to cause resistance? I find that nearly impossible. Do I suffer from some sort of HIV-related neurocognitive disorder that is causing me to forget doses? Every day I work with mental health professionals who would certainly notice such symptoms. Could my frequent travel across time zones and adjustment of doses create an opening through which the virus could develop resistance? My doctor says no.
No matter what the cause, being detectable has stirred up a variety of feelings about HIV that I hoped to never again experience. Here is how I manage them.
I have felt a sense of anger from the time I again became detectable through the months that followed. Why is this be happening to me? I have taken all my medications as prescribed and I carefully attend to my health. I resent having to devote energy to addressing my viral load. This situation reawakens within me old pockets of anger about HIV. It confirms the lack of any fairness concerning this virus. Each time these flares of resentment rise up to my throat I am (most often) able to consciously breathe and slowly neutralize the negative energy. I foster a sense of gratitude that I have access to medications and that they have been effective. Anger is unhealthy and at these times it is essential that I work my way back to a sense of acceptance.
Every time my doctor and I discuss my lab results, and every time he asks if I am really adherent, I feel my face flush. I have nothing to feel ashamed about, yet each time I experience a sense that I have done something wrong. This feeling that I am somehow flawed is old and familiar, having grown up as a gay man and having carried the stigma of living with HIV. It is something I have fought hard to defeat. I am embarrassed because a good portion of my professional life is devoted to working with clients on their own adherence problems, as well as training other therapists on strategies to overcome resistance and adherence concerns with their clients. I feel like an imposter doing this work while being unable to achieve undetectable status myself. Feeling shame is an automatic reaction that rises because, at some level, I sense I am flawed. When I feel shame, I challenge the irrational beliefs that fuel it: Is this thought really true? What is the evidence? How can I reconnect with my strength and self-confidence in this situation?
Fear and Anxiety
Anxiety is woven like a tangled vine through the experience of having a detectable viral load. I worry about the consequences of not being totally suppressed or becoming resistant to available medications. Having made peace with chronic fear many years ago, I am usually able to rein in my thoughts from an imagined future, with its bottomless pit of "what if" questions for which there are no answers. While fear is a useful and vital emotion that informs us about conditions that could harm us, anxiety -- which I conceptualize as fear that constantly cycles with no resolution -- can hijack one's life. When such anxiety takes hold, I force my thoughts back to my life here in the present.
Being detectable raises another aspect of fear: What about my HIV-negative partner? Numerous studies have documented the extremely low level of risk when someone living with HIV is virally suppressed. What about a very low, but detectable, viral load? What risk do I pose to my spouse and what behavioral precautions may need to be reinstated? Years ago, when I became undetectable, my anxiety about causing harm to others dissipated. Now those concerns have reawakened because my status affects both me and my partner.
There is one final feeling that arises when confronted with my viral load: a sense that my body is somehow betraying me. I wonder what is happening inside. Have three decades of chemotherapy and chronic inflammation exhausted its ability to overcome the virus? I have always felt confident about managing HIV, but these lab results have planted seeds of doubt. I value being attuned to both my mind and body. I listen and respond accordingly, yet this problem makes me question if my body remains my ally. I believe such a sense of separation of mind and body is unhealthy, so I utilize visualization, an extremely powerful technique. I see my healthy body suppressing HIV in my mind's eye, and I find that both soothing and healing.
Having a viral load that dances just above detectable (but not high enough for further resistance tests) has provided a constant set of challenges that draw me out of an easy and effortless relationship with HIV, but I know what to do. I teach my clients to avoid so-called cognitive traps such as "black and white thinking" and "jumping to conclusions," because these thoughts give rise to unhealthy emotions. When that happens, I pull myself back to the present and remind myself that today I am fine. And I have every belief that tomorrow will be the same.