The other day I was out with some friends, taking in a hipster marching band at the Montréal Jazz Festival, when one of my friends asked me about a photo I had posted of my meds. Do I really take that many pills every day? How many, exactly? And what are they?
When I have had that experience before, it was because my niece was studying to be a pharmacist assistant and had an interest in seeing them. What usually happens is that people look away, or feel like they are intruding on something private and avoid the topic or leave the room.
Now I’m not one to shy away from the show and tell, so I usually put it all out there — take my bag of pill bottles out to refill my doses for the next day when I’m on vacation, or even leave them all sitting out on the desk in a hotel room.
Now I’m not doing this out of carelessness or a lack of concern for the sensitive feelings of others. Well, maybe that last one. I like to show and talk about my meds precisely because it seems so taboo. I’m not ashamed of them; they are a fact of my life. I’m only too happy to talk about what they do (good and bad) and what they mean for my life. I think that’s a part of telling a realistic story about what it is like to live with HIV now, to encourage solidarity and maybe motivate some of our HIV-negative friends to avoid getting infected.
We know that fear campaigns don’t work anymore, at least not over the longer term: it isn’t credible to show people dying of AIDS when so few of us in our particular context are. At the same time, waves of pharmaceutical advertising are extolling the virtues of just how simple HIV treatment is now.
I can’t disagree that it is possible to have a fairly simple treatment and that is excellent news for many, but it isn’t the whole story. Even at one pill a day, many of our HIV-negative friends can’t imagine having to take that every day, forever.
Our friends and families used to be much more aware of HIV treatment in the bad old days. You couldn’t miss the AZT overdosing schedule or the sounds of those ubiquitous med alarms that the pharmacists used to make available to us. Progress in treatment has meant retreat in awareness about treatment by those not taking it. And that contributes to a generalized lack of awareness about what it’s really like to have HIV now: not the same disaster it used to be, at least on the treatment front, but not necessarily a cake-walk either.
I understand wanting to minimize the impact of HIV in your own life — I feel that way, too. In fact, I can pretty much work my way through all the pill bottles to set out my dose for the next day in under a minute. The difference is that I am eager to slow it down and add a narrative in order to promote more HIV awareness that jibes with today’s realities.
My round-up of 17 daily pills (pictured):
- six for HIV
- four for the symptoms of arthritis (arthritis treatment itself is immune-suppressive)
- three for hypertension
- one for acid reflux
- three self-inflicted ones: a vitamin and two glucosamine/chondroitin
(Editor’s note:. Ken has got me beat. I only take 13 a day.)
Photos by Ken Monteith.