I ran across an interesting article in POZ. GMHC took a survey of people taking antiretrovirals, and asked them about adherence. Part of the survey asked them why they missed doses, if they did. The number one answer for gay men was, "stress, anxiety and depression." Gay men have not cornered the market on stress, anxiety and depression. I guarantee that many women (me among them) find that stress, anxiety and depression complicate antiretroviral regimens. Taking all those pills can be ... well, stressful, anxiety-provoking and depressing. But it wasn't the number one reason women said that they missed doses. They said "child care and family obligations." Having HIV doesn't release women from their jobs as caretakers.
Let's take a look at two "typical" families (husband, wife, 2.5 children). Family A has one person who is positive, the husband. Let's call him Joe. (No relation to our handsome newsletter editor.) He works out a drug schedule that means he has to eat at 7:00 p.m. He goes home and explains this to his wife and 2.5 children. They usually eat at 6:00 p.m., but his wife agrees to have dinner ready at seven, and they will eat together. She will pick up an industrial-size box of Twinkies so that the kids will have something to snack on after school. This will keep them from whining.
If Joe sits down at the dinner table without his pills, his wife will probably fulfill her socially expected role and nag him. Joe may have plenty of other problems with his regimen ahead of him, but his family won't be one of them. And getting back to the GMHC survey, the coordinator was surprised by how helpful the families of straight men are in helping them to adhere. For the curious, the number one reason straight guys missed doses? "I forgot."
O.K., so now let's look at another family. In this one, the mom, Jane, is positive. Just like Joe, she comes home from the doctor with all these drugs, and a dosing schedule. She also has to eat at 7:00 p.m., an hour off from the normal family time of six. So she announces this to the husband and 2.5 kids.
Her family initially agrees to this. However, by 6:30, the husband will be staring pointedly at the refrigerator while gnawing on a ketchup and relish sandwich. Out in the living room, the 2.5 kids will have low blood sugar and are fighting over who gets to shove the dog into the washer. Or at least two of the kids will. The .5 kid won't have much to say, having only half a mouth.
After a week or two of this, Jane will probably decide that protease inhibitors aren't worth her sanity. She can try to express her needs more clearly, but it's going to be an uphill battle. Ever see one of those Stovetop stuffing commercials? Notice the kids never complain to dad about food. When it comes to looking after the family, mom's the one on the spot. Jane's family may have the best of intentions to help her out (and they probably do), but they may be uncomfortable assuming the caretaker role.
Jane will also be uncomfortable accepting this role reversal. Although her family won't collapse from starvation, she may feel guilty about disrupting things. One strategy for long-term survival is knowing when to accept our own limitations, and focus on our own needs. It shouldn't be surprising that women would find this more difficult. As a matter of fact, many of the long-term survival strategies (taking charge of your own health care, being assertive, etc.) are things that society in general discourages in women. We need to develop strategies to help women help themselves. Recognizing the differences between the Janes and the Joes is the first step.