I recently saw this ‘PLWHIV’ used as a way to contain the lengthy burden of saying ‘people living with HIV’, because apparently that’s just way too many words to say nowadays. I’m not sure why but it really bugged me; like as if it were saying, “they’re important, but can we just make it easier for us to talk about them?”. And yeah, I realize that is almost 100% not the case for this, but for the sake of the idea I’m going to pretend I don’t realize this yet.
Over the past few months, people living with HIV have become pretty near and dear to my heart. Each day I get to spend time with people living with HIV and I get to learn a little about the HIV part of their lives, and a lot about the living part of their lives.
I get to spend time with a middle-aged couple who just found out they’re in pretty poor health due to their unknown HIV and who are struggling to cope with their statuses, as well as unsure of when to tell their teenage children. I get to spend time with the 23-year-old boy who desperately needs to begin treatment, but refuses to disclose his status to anyone, and therefore is not allowed to begin medication. I get to spend time with the woman who is pregnant with a child by her boyfriend, who she can’t tell about her status because he has spoken generally to her about HIV before, and how he would gladly kill any woman who he was sleeping with who he discovered had HIV. And I get to spend time with the 9-year-old boy who takes his medications each day, but whose body is failing him and refusing to accept the treatment; but he doesn’t mind coming to the clinic twice a month because it means he gets to miss the grammar lesson at school. Oh, and the newly divorced mother who is HIV positive, but more importantly is taking interior design classes, is involved in a fitness challenge, and who is learning “how to be alone without being lonely” without her now ex-husband.
I think what makes me upset about this ‘PLWHIV’ business is that it dehumanizes HIV and the people living with it. In Guyana it’s estimated that 4 out of every 5 people have HIV, and each of them have a life before and after their diagnosis. Each person who lives with HIV has their own story, their own experience, their own hurt and their own shame in learning that their life is forever going to be changed, and that their health is forever going to be challenged. Calling each of these individual human lives one cumulative ‘PLWHIV’ takes away the face of the 23-year-old who I am now angry with as he continues to refuse disclosure while, in turn, his health declines; it takes away the laughter of the 9-year-old when I ask him if he’s being a good kid to his mother; it takes away the fear in the face of the expecting woman as she tells me why she desperately cannot tell her boyfriend her HIV status. It takes away all of the humanity behind HIV.
There are a million ways in which people with health conditions are bundled together as one long, unpronounceable name or as one wing of a hospital. But each time society bundles health concerns together, we also bundle the lives that surround these health concerns together. What I love about working with people living with HIV is that it reminds me, each day, of the humanity that makes up ‘PLWHIV’.