David has hemophilia. Three days a week, he wakes up, showers, dresses, and sticks a needle into a vein. He’s been doing this since he was a child. He does this three days a week, for fifteen minutes each time, because if he doesn’t, a fall or scrape can land him in the hospital – or a coffin. This needle is a reality he’s lived with all 22 years of his life and one he will carry to the grave. It is, and always has been, a symbol of who he is. It has defined his life.
It would seem on the surface that medication compliance would be a non-issue. But for the makers of blood clotting drugs used to treat the disease, it turns out that managing this very necessary element to living with hemophilia is not as simple as it seems. Quite simply, young men (women very rarely suffer from hemophilia) are not particularly good about taking medication, even when that medication is essential to living a healthy life.
From the time they are children these individuals have limitations imposed upon them. Playing with others is often curtailed, parents hover, and they grow up constantly under a watchful eye. As one of our participants, John, explained as we sat in the Seattle apartment he shares with a couple of fellow college students:
“My mom and dad were everywhere, all the time. I get it, but it fucked with me, too. I couldn’t play sports until I was in high school. My mom controlled my infusion schedule and always checked to make sure I’d done it. So, when I went to college, yeah, I kind of slacked off. I don’t think it was some sort of rebellion, I mean, I wasn’t angry. But there’s a kind of freedom I’d never had before, and you take advantage of that, I guess. People can’t imagine what it’s like to shove a needle into their body twice a week, every week, and spend 15 minutes slowly pumping yourself full of your medicine.”
The transition from adolescence into adulthood can be difficult, but when chronic illness is a central marker of identity, that transition becomes harder for young men who have lived in a framework of dependence. Taking care to infuse means being able to engage in every activity they choose with the people around them, but there are a host of reasons to let treatment slide; some functional, such as time management, and some symbolic, like telling the disease to fuck off.
The fieldwork noted that the role of shared space vs. private living space – often very limited – had an enormous impact on compliance. The first evidence of this point was the role of the refrigerator. Because the medication needs to be kept cold until use, it has to be stored in the refrigerator. Having the medication on public display was embarrassing and inevitably led to questions by both roommates and visitors. That meant that he and his medical condition were suddenly thrust into the spotlight, focusing attention not on the person, but the person as his illness. The second shared space vs. private space problem was finding a place to infuse. The process takes about 15 minutes and while it wasn’t hard to find time to do it, the patient needed to avoid interruptions, excuse himself and ensure some degree of privacy. Because this could be difficult or embarrassing, he might simply forego treatment.
House hygiene was another issue, especially in a shared environment. When we entered one apartment, as might be expected, I had to search to find a space that was free of pizza boxes, clothes, or textbooks. Keeping infusion equipment clean, keeping the bathroom clean, keeping the refrigerator clean, etc. was often a point of contention. Because the person with hemophilia is dependent on others to help keep a clean environment, it was often simply easier to skip infusion than to confront or manage the living situation with roommates.
But the environment is only one of the issues impacting these men; social and psychological changes are another. After moving away from home, young men with hemophilia encounter a degree of personal freedom that they have never experienced before. The wide range of limitations placed on these young men growing up are suddenly gone and learning how to handle it is the problem. There is a significant resistance to personal and social childhood limitations, the result being that finally getting involved in intramural football isn’t enough. As one participant, Brent, told us, “Hell yes, I did stupid things. I had someone watching everything I’ve done for my whole life. So you go a little bat-shit when you’re on your own.”
Resistance might mean drunken Twister, midnight wrestling, or skateboarding without a helmet. In one instance, I had the dubious honor of “officiating” an arm-wrestling contest that was fueled by shots of Fireball – not something you drink when planning an evening of rich conversation. I watched as our participant had his hand driven into the table by a friend who was considerably larger. Under normal circumstances this would have hurt, in this instance, had the participant not been infusing, it could have been life-threatening.
Chronic illnesses can shape a life-long sense of self, and adulthood is the first time these young men have control over how the world sees them. Social bonding becomes more important than managing the disease because for the first time, they can simply be “Steve”, not “Steve the hemophiliac”. This sometimes leads to a more exaggerated expression than you see with the typical 18-year-old man. And it often leads to less compliance as the young man finds himself expressing his identity in opposition to the illness.
Not taking the medication is dangerous, but it’s also empowering. One participant, Jason, lived with two other young men in a small apartment, strewn with the standard debris of college life. For him, this wasn’t just a matter of letting the housekeeping slide a bit, it was a way of demonstrating his sense of independence. And while his infusion tools were kept clean and away from the chaos of the apartment, there was a haphazard element to their storage that fit the overarching theme of making a break with the past. “I know it’s stupid, but at least I’m in control. Not my mom. Not the disease.”