"It looks like I'm going to be starting a new drug regimen."
As a counselor, I often find myself sitting across from a client who begins the conversation with these words. Each has his or her own reasons for changing regimens, including efficacy, side effects and compliance issues.
If you are facing a change in your regimen, or have been presented with this possibility by your physician and are talking about the next steps, chances are you are experiencing your own thoughts and emotions. What I have learned from my clients is that a new drug regimen presents both challenges and opportunities. And like other life changes, the best way to tackle them is through acknowledging our emotions, harnessing the power of your rational mind, and taking action.
Remember that you are not at square one. In the immortal words of Joan Crawford in the film Mommie Dearest: "This ain't my first time at the rodeo."
As you approach your regimen change, don't forget that you have been down this path before. Whether this is the first time, or if you have changed too many times to count, or at least feel that way, you are not a stranger to facing the uncertainties of putting new medications into your body. You've been through whatever period of time it takes your body to adjust, the temporary and potentially long term side effects, and the frequent monitoring.
So you've got an edge here. I have clients who, because of past experiences, approach their regimen with bravado -- a "dare you to defeat me" attitude and a lot of chest pounding. This attitude may result from having worked closely with their physicians to evaluate potential regimens and to determine when to begin the new therapy, with confidence that they have chosen the optimal route. Enthusiasm may also be related to an intense sense of relief due to the end of regimen that has been difficult to maintain, or has resulted in intolerable side effects, or has become less effective. But is there another side to the bravado?
Some clients use their bravado as a way of avoiding some of the less acceptable, uncomfortable feelings that a new regimen may provoke -- anger, fear, frustration -- while others don't even attempt to hold back on the dark side but instead go there and stay. They recall past experiences with new regimens that caused intestinal distress, or nightmares, or fatigue. If they had to face it in the past, how could this one be any better? They can't help but wonder: what next?
Let me tell you about a client who I will call Doug, who has been HIV positive for 15 years. As a veteran of AZT, he is no stranger to changes in his medication. He has gone through a few of them over the years. He has been on his current regimen for more than two years but has gradually become resistant to it, so he finally agreed with his physician that it was time to change. But that doesn't mean Doug was looking forward to this change.
I had my treatment down to a routine. I was calling my meds my vitamins. Now, that's a joke. I mean I wasn't even thinking about them any more and was barely aware that I was popping them at the same times every day. It's like they were just pills that had nothing to do with HIV.
Doug was overwhelmed by the idea of having to make changes in his routine to accommodate the new regimen, along with the adjustment that his body would have to go through. But more important, he didn't want to face the feelings that went along with this change. With a comfortable medication routine, HIV stayed in the background. With a regimen change, he was going to need to be conscious of how he was feeling physically and emotionally from the perspective of his HIV. He was going to have to adjust his schedule to accommodate his regimen. Basically, the prospect of paying more attention to his medications made Doug feel like a patient and disempowered. He thought he had long ago left the patient label behind and wondered how much old territory he was going to have to cover again.
You may want to ask yourself the question I asked Doug: What worked and didn't work the last time you went through this?
Take a moment and think about past experiences with regimen changes, or even back to when you first began taking HIV meds. What helped you to handle the emotions you were experiencing around this new chapter in your life? Did you get informed? Connect with supportive people? Make lifestyle changes? Get in touch with your spiritual side? In other words, how did you get to the other side of what may have seemed like a very deep valley? Just as important, what did you do that didn't help at all? What bumps in the road could have been avoided?
If you take a look back, you may rediscover some coping mechanisms that have slackened off due to lack of use but, with some exercise, can again be relied on to help you deal with this challenge. Below are some ideas you may find useful.
Update Your Knowledge: I often hear that, over time, people's drive to actively gather information has declined when the current medication is doing its job or they've grown to trust their doctors. How long has it been since you updated your knowledge about HIV and the latest treatments? Some clients approach their new regimen with such enthusiasm that they don't want to "jinx" anything by overanalyzing or otherwise questioning the limitations and the benefits of the new regimen. Others avoid knowing too much out of a concern that their worst expectations will only be confirmed. Either way, a new regimen is often the kick in the butt that gets people re-involved in their treatment. Is it time for you to start asking questions again and seeking answers? The HIV medication picture is constantly changing. If you haven't been keeping yourself educated, or have gotten out of the habit, now could be a good time to restart the process. Even a few minutes a week, on a regular basis, can be a step toward staying informed and can give you an outlet for the anxiety and frustration you may be experiencing.
Don't Hesitate to be High Maintenance: Getting involved begins with asking questions. If you haven't asked why a regimen change is recommended, that would be the starting point. While the answer may be obvious to you (for example, if the side effects were becoming intolerable) your physician may still be able to give you additional insights into why the regimen is being changed at this time. What are the risks of changing the regimen in terms of keeping the virus in check? And then there is a whole new set of questions regarding the new regimen. Why this regimen and not one of the other options? And what can you expect in terms of effectiveness? Side effects? It is not uncommon for HIV patients to become complacent in their relationships with their physicians over the years. Patients have told me that have almost forgotten how to express complaints or concerns to their physicians, and may even feel guilty doing so, as if they are letting their doctors down by no longer acting like model patients. But you shouldn't worry about being "high maintenance" -- it's your health at stake.
Keep Records: It may be a long time since you have thought about your medications beyond keeping your prescriptions on hand and taking them on schedule. But a new regimen is going to completely throw off your routine, and if don't stay conscious of this new routine, you may find yourself taking the new medications at the wrong time. Until you retrain yourself to follow the new schedule, it can be helpful to carry a small notepad to use to keep track when you took what medication each day. This will save you from having to reconstruct what you were doing earlier in the day. While you are keeping a record of when you took your new medications, you may also want to make brief notes on how you are feeling. Did you experience some nausea one afternoon? Write it down. Dizziness or a headache on another day? Make a note of that too. And what about questions? It can be helpful to keep track of your questions in this same notepad, which you can bring to your next doctor's appointment.
Stay Connected: Because a new regimen can raise some unfamiliar issues and emotions, it can be really helpful to have a place to talk about what you are going through. You may want to connect with a support group through a community center or HIV organization. Here, you are likely to find people who are going through the same situation as you are, and possibly with the same regimen, who can offer both emotional support and their own perspectives. If you are involved in a church, or synagogue, or a spiritual group, this may be a time when you want to reach out for support. You may also want to consider talking to a counselor who is experienced in dealing with HIV-related concerns. This is not a time to be alone. Find a safe place to talk and strategize with someone who cares about you, understands what you are going through, and who can also be an objective sounding board.
Adhering to Your Regimen: Depending on what you were facing with your most recent regimen, adherence may have become an issue. Consequently, you may be looking forward to an easier schedule with the new regimen, or have other reasons for anticipating the change. Or, as I discussed earlier, the new regimen may look like a steep uphill climb. Either way, you don't need another lecture about adherence. But if you have doubts about your ability or willingness to stay with it, talk to your physician so that he or she can explore whether the regimen is having a biochemical effect on your mood. Talking about your emotions with a support group, friends, or a professional counselor can also be helpful.
A new regimen can unleash a whole range of emotions, some of them a blast from the past, and some of them brand new, and your emotions can impact effectiveness of the new regimen as well as adherence. This is not the time to continue going it alone. Keep a close watch on how you are feeling emotionally, and don't hesitate to ask someone else to watch with you.
Gary McClain, Ph.D., is a counselor in New York City. He is developing a Website, www.IJustGotDiagnosed.com.