When I got my HIV diagnosis, I asked my doctor a question I already knew the answer to. I asked her how long I was going to have to take a medication every day. Of course she answered my question with one word: Forever. Again, I knew the answer. But I think I just needed her to help my mind grasp what this diagnosis was going to mean. I think she wanted me to feel better when she also said we can’t predict the future, and medical science could come up with a miracle. Someday. That was a few years ago, and I am still taking that pill every day.
I have to be honest with you, Dr. Gary. A lot of things are upsetting about this. Forever is a big word. If I am going to stay adherent to the regimen you have given me, my life is not going to be as spontaneous as it used to be. I will have to remember to have my medication with me, and to take it at the right time. Sometimes I worry that it’s not working like it is supposed to, or that it might cause long-term side effects. I worry that it might stop working at some point. Other people have noticed that I’m taking a pill and have asked me questions I don’t want to answer. And then think of me as a sick person. And I’m reminded again of my future on medication when I am switching insurance plans. Or when I’m waiting on lab results.
There are still days when I have trouble accepting that I am going to be on the meds until I die. What do you tell your clients when they talk about meds forever?
You are sure not alone in having all these concerns about potentially being on medication for the rest of your life. And yes, I have this conversation a lot with my clients, who share your concerns. Here’s what I say to them first: Forever seems like a long time. But the road is traveled a day at a time.
Here are some ideas for coping with the idea of being on your regimen indefinitely as you travel that road.
Talk back to catastrophic, “what if” thinking. When you’re first starting on HIV regimen, it’s only human nature for your mind to go off in all kinds of directions as you think about what your life might be like in the future as you travel this road. But keep in mind that, when there is a lack of information, our minds have a way of filling in the gaps. Often with stories about what we imagine could be the worst possible outcome. Remind yourself that you just plain old don’t know what living with your regimen is going to be like going forward. Anything is possible, including the possibility that you will continue to thrive.
Break your regimen down into the daily tasks. With the responsibilities that your regimen will continue to demand that you meet, it’s all too easy to sort of turn the whole prospect into one big inconvenience. So take a step back and dig into the details in terms of what your HIV regimen means on a daily basis. Sure, it could make new demands on you in the future, with unwelcome changes ahead. But don’t get ahead of yourself, you’ll just feel overwhelmed. Think of any potential changes ahead in terms of small steps, not big leaps.
While you’re at it, also identify what aspects of staying on top of your regimen may be most challenging. Sure, let’s be realistic here. Your HIV regimen may pose some challenges for you, even just having to take your medication at a specific time of the day. In other words, get specific with yourself. Is it just the idea of daily medication that bothers you? Or is there something specific about your current regimen.
Come up with a strategy for maintaining adherence. Consider everything you need to do to maintain adherence with your HIV regimen. And then map out a strategy for keeping your regimen on track. You might want to get some advice from your doctor, as well as family members or friends whose judgment you trust.
Identify the benefits. What is your daily HIV regimen getting you. Yes, I know, it’s helping you to avoid symptoms, feel better, or both. But let’s get more specific. Can you name ten things your regimen makes possible? Here are some ideas: Keeping up with your kids. Getting through the day at work. Being there for your partner. Doing something you value and enjoy. You might want to keep a list of benefits around to review when that “forever” question hits you.
Stay informed. Learn everything about your HIV regimen. Jump on the Internet. Ask your doctor questions. Knowledge is power.
Don’t go through this alone. Ask for help if you need it. Emotional support. Reminders. Gentle accountability. And some place to vent when you’re having an especially frustrating day. Chances are, your loved ones want to help. They may be waiting for you to let them know what you need. Get a support team in place so that you aren’t traveling alone on the road ahead. Support is power!
You and your HIV regimen. Chronic conditions like HIV require ongoing treatment. Embrace your regimen as the key to helping you live the life you have envisioned for yourself. Keep your focus on making the best of your regimen. Today. The future will unfold one day at a time.
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.