A few weeks back I had a health scare. In the middle of a session with a client I noticed discomfort slowly creeping toward my lower back. At first I thought it was something minor. Indigestion? Sitting too long? But when I stood pain shot through me. Each time I breathed, it worsened. I could only walk at a near 45-degree angle to tolerate the pain. I felt like and walked like a man 50 years my senior. I was scared. I needed to go to the hospital.
Hospitals scare me. The worst news of my life has been delivered there: my mom's cancer returning, my HIV infection, loved ones dying. Therefore I didn't want go to the emergency room, but I had to. My best friend, positive since 1984, accompanied me. We both thought, not without logic, that I had acquired a lung infection of some type, fearing pneumonia or the like. Doctors drew blood, ordered X-rays, and performed magnetic resonance imaging. All results were negative. To my surprise and slight embarrassment, it turned out to be a strained muscle in my lower back where the rib cage ends, which is why the pain mimicked some type of problem with my lungs. They gave me some pain medication and muscle relaxers and sent me on my way.
In those first moments, however, everyone, including my friend and the doctors, was convinced that it was a lung infection. I was terrifically scared. Was it an opportunistic infection? But in addition to the very real fear of how my HIV might be progressing, another familiar fear returned to me--what would it be like for my family if they found out this way, with me in the hospital, that I was HIV-positive? How awful would it be for them? And for me?
I have written about this before--the decision whether to disclose to one's family--and I have shared that I have not done so myself. In the past I received some e-mails expressing shock and disappointment for this. Perhaps I'll receive some similar e-mails this time. Some people have asked me why, as a therapist, I haven't been forthcoming with my family about my illness. My answer is that there are no easy answers. It's an intensely personal act and one that requires a fair amount of soul-searching. And I ask of myself what I might ask of my clients: Why do I suppose that I don't tell them? What do I fear? What is there to be gained by telling them? To be lost by telling them?
I suppose my reluctance arises from a fear of rejection or alienation. And in the 'worst case scenario' situation, I consider what has happened to some of my clients in similar situations--a family that purports to love them yet insists that they use different silverware or avoid contact with the nieces, nephews, or pets. My mother expressed concern when I started working around people with HIV for fear that 'they' would give it to me. When I tried to explain that I wasn't having sex with my clients, she responded, 'Well, I don't believe that sex is the only way to get it. You don't touch them, do you?'
That was five years ago, hardly the epicenter of the epidemic. And while I openly acknowledge the implausibility of this type of reaction now, emotionally it still feels very real. And the fear of being shunned, feared, or pitied in one's own family seems more painful, at least in the short run, than holding onto a secret. I know I'll tell them at some point. There are no easy answers. There is no good time to tell them. And there is no one way of living with this virus.
Fransen is a licensed clinical social worker and is in private therapy practice in Chicago.