Question Dr. Gary, you have talked about the importance of compliance with your regimen for a long time. So you can maybe imagine my surprise when I recently mentioned how I was trying to stay compliant in a conversation with another HIV+ guy. He kind of jumped down my throat and said, “Compliance is disempowering. We don’t use that word anymore. Now, we’re saying adherent.” I don’t see a whole lot of difference between complaint and adherent. What do you think?
Answer: It seems like we’re all more aware of the power of words these days. Not only how words are defined, but what they may imply. And, as a result, how words may affect the ways in which others view us as well as how we view ourselves.
Since you brought up, I ‘ll start with my own experience.
I have always used the term “compliance” to describe being true to your medication regimen and self-care routine, following the plan that you have created with your healthcare team. I have used compliance to describe the best way to manage your HIV.
But recently, I have also learned that compliance is not necessarily the best word to use. In fact, many individuals who are living with a chronic conditions like HIV don’t actually appreciate this word.
Instead, the preferred term is adherence.
When I first heard that members of the HIV community were using adherence in place of compliance, I went back to the dictionary to help myself better understand the thinking behind this shift in words. Here’s what I learned about how these two words are defined on Google:
· Compliance is the action or fact of complying with a wish or command.
· Adherence is attachment or commitment to a person, cause, or belief.
See the difference? Compliance is essentially doing what you are told to do. Whereas, adherence implies doing something out of a commitment you have made. In my mind, adherence involves active involvement in your treatment. Evaluating the options and making choices. And not merely taking orders. While I thought of compliance in this regard, it also makes sense that this isn’t exactly what being compliant implies. See what I mean?
So you might be wondering about how you are managing your HIV. What word fits best for you? Are you being compliant or are you being adherent? To make that determination, here are some questions to ask yourself:
Have you evaluated your options in treatment approaches? Adherence means taking the time to look closely at the options available for treating your HIV, including the medications to consider. This requires some homework. But doing the work to understand the treatment options will help you to make an informed decision about the approach that is best for you. Complaint means waiting for your doctor to tell you what approach is best. Adherent means being aware of the options for treating HIV and being involved in choosing the optimal approach.
Do you have a self-care regimen that works for you and you alone? Each of us is a unique individual, with our own habits and preferences. Like diet, how you like to keep active, how you like to relax. And how you are affected by medications. One size has never fit all. Consequently, chances are you aren’t going to be willing – or able – to “comply” with a self-care regimen that isn’t tailored to the way you live your life. Living with HIV requires making changes, for sure, but it doesn’t have to mean turning your life upside down, or trying to live up to a way of life that just plain old doesn’t make any sense. Adherence means working with who you are and not against yourself.
Do you question your doctor’s recommendations? I am not suggesting that you need to argue with your doctor. But compliance means saying yes when, in your heart, you may have uncertainties, doubts, or even red flags. On the other hand, if you are going to sign on to a regimen and treatment plan that you can live with, that might mean asking some hard questions. Think of it this way: Questioning your doctor’s recommendation is not trying to argue but to understand. And understanding leads to confidence, which in turn makes it more likely that you will follow through on the plan you and your doctor have mutually agreed upon.
Do you have an eye on the future? When you’re compliant, you may find yourself waiting to see what might happen next. When you’re adherent, you have an idea about what the future may bring because you’re doing your homework. You have an understanding of HIV and how it might impact you going forward. You know what you may need to consider to best manage your condition. And you’re aware of what’s available or in the pipeline. In other words, you are taking an active role in planning for what you will need on the road ahead.
You and HIV. Commit to taking the best possible care of yourself because you choose to. And stay actively involved in determining the direction of your treatment plan. The operative words here are commitment and involvement. That’s adherence!
Gary McClain, PhD, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, www.JustGotDiagnosed.com.