When I recently asked my doctor how long I was going to have to take antiretroviral medication every day, she answered: Forever. Are you really saying I’ll have to take a pill every day until I die?
You are surely not alone in having concerns about potentially being on medication for the rest of your life. 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 to forever is traveled a single day at a time. Here’s how to cope with the idea of being on your regimen indefinitely:
Talk back to catastrophic “What if?” thinking. When you’re first starting on an HIV regimen, it’s only human nature to 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—with the worst possible outcomes. Remember you don’t know what living with your regimen is going to be like going forward. While you may indeed need to take HIV medication for the rest of your life, new treatment options are being developed all the time, and many revolve around long-acting injectables. In a few years, your HIV treatment might require one shot every three months instead of a daily pill. Anything is possible, including the best possible outcome.
Break your regimen down into daily tasks. Your doctor has just given you a lot of information about what pills you have to take, what tests you’ll need, and how your lifestyle may have to change. It can sound overwhelming. It’s all too easy to focus on the new responsibilities having HIV will now demand of you. Take a step back and dig into the details in terms of what your HIV regimen actually 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. Think of any potential changes 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. Be realistic here. Your HIV regimen may pose some challenges for you, even just having to take your medication at a particular time of the day. Get specific: Is it just the idea of daily medication that bothers you? Or having to carry a pill container around, or needing to set up some kind of pill reminder? Or are you worried what might happen to your health if you miss a dose? Be specific about what bothers you.
Find 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. There are apps, timers, pill containers, and lots of other devices that can help you remember what to take and when. You might want to get some advice from your doctor or pharmacist, as well as family members and friends whose judgment you trust.
Identify the benefits. What will adhering to your daily HIV regimen get you? Sure it helps you to avoid symptoms and feel better now. But get more specific. Can you name 10 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 for many years to come. Not being at risk of transmitting HIV to someone else. Being physically able to travel or do something else 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. Talk to other HIV-positive people and find out what their regimens are like. Knowledge is power.
Don’t go through this alone. Ask for help if you need it — emotional support, reminders, gentle accountability, or a 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! Chronic conditions like HIV do require ongoing treatment. Embrace your regimen as the key to helping you live the life you have envisioned for yourself. The truth is, by taking your medication you can pursue all the same dreams you had before you were diagnosed. 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. (JustGotDiagnosed.com)