A young man who worked in a restaurant in my neighborhood recently passed away. I learned that he had stopped taking his HIV medication. He experienced debilitating symptoms and was taken to the emergency room, then moved to intensive care, where he died.
I started with a new client who had not been taking her medications consistently. In her words, she “just got lazy.” She and her physician are now working together to find a routine that will work.
My clients often talk about the impact that being compliant with their HIV regimen has on their lives, the frustrations, the annoyances, or just not seeing why it is such a big deal: “The routine has become boring and I miss my old life”; “I’m seeing some side effects that I don’t like”; “I’m feeling fine. I can’t believe that skipping a pill here or there is going to make any difference”; “I am tired of feeling different from everybody else”; “I want to be normal again.” I’ve heard all these excuses before.
So how is your treatment going? Are you tired of the grind? Are you having down days? Are you trying to get over feeling like an outsider? Here are some ideas to help you stay on the path:
Be part of a community. I find that so many individuals facing HIV are going it alone and keeping their diagnosis to themselves. Traveling this path solo can be lonely. Talk to others who have been diagnosed with your condition. Learn what they do to stay on the path. Share some tips and give each other some encouragement. Support is power. Don’t let your fear of stigma keep you isolated.
Focus on what’s good in your life. It might help to make a list of the blessings in your life and then review your list during those times when you are feeling especially discouraged. Your treatment routine may present some challenges, but what’s the upside? Is your regimen helping you maintain what’s good in your life? The cup may feel half empty, but it is also at least half full.
See if anything needs to be tweaked. It may be time to fine-tune your day-to-day life management, including diet, exercise, and how you schedule your day. Your attitude is important too. Burnout can also be a sign that something in your life needs to be evaluated and potentially changed for the better. If something’s not working, maybe it’s time to have a conversation with your doctor.
Don’t let other people make you feel bad about yourself. Nobody asks to have a chronic condition or to face the daily challenges that come along with it. You certainly didn’t. Educate and reassure your family members and friends as much as they will allow you to. Get support from supportive people and stop expecting support from the people who just can’t give it to you.
Maintain your perspective. Staying on the drug compliance path is a one-step-at-a-time, one-day-at-a-time process. But humans have a tendency to do a lot of what-if-ing and awful-izing. Our minds can create a bleak future, filled with scary possibilities but devoid of the facts, which can lead us to wonder, Why bother? We only know what we can know today. Taking the best care of yourself is the best you can do for yourself. Flood the fear with facts.
Consider the alternative. Maybe it’s time for some tough love. If all else fails, bring in the heavy artillery and think about what it means if you do not take your medications—medical complications, disability, and death are all possibilities. Remaining compliant is most likely preventing symptoms from recurring and possibly helping to prevent further problems down the road. And it allows you to be the best you can for yourself and the people you care about. In that way, your medication regimen is similar to an insurance policy.
Take care of your emotions. When you aren’t feeling well physically, you go to a doctor. When you feel overwhelmed emotionally, this is a good time to reach out to a mental health professional. Find a safe place to talk about your feelings, including the “bad” ones. It’s OK to vent. But also keep in mind that staying compliant with your medication and self-care regimen is not only the result of whether you are feeling it or not. Taking the best possible care of yourself is a rational decision. I know that on those days when you are feeling your worst or when it’s difficult to be compliant, it’s hard not to ask the “Why me?” question. But staying complaint is a decision that you make and that you decide to stick with, even on those days when it’s the last thing you want to do. You do it because you have to do it. So most of all, remind yourself—every day—that you are worth all the work and all the inconvenience your regimen entails.
Gary McClain is a counselor in New York City with a specialty in coping with chronic health conditions. His books include The Complete Idiot’s Guide to Breaking Bad Habits> and Empowering Your Life With Joy.