It seems like everyone in HIV care recently uses the word “adherence” as often as a transcendental meditationist uses the word “om”: over and over again. But isn’t that what “adherence” is? Taking your colorful collection of pills “over and over” again? Millions of people worldwide now toast themselves once or more times daily with a “cocktail” of antiretroviral medications. The developing world would say that we in the Western world should consider ourselves lucky that we have access to such medications. However, a friend of mine recently mentioned a study he read that said the primary reason people don’t take their meds — or are “non-adherent” — is they “just don’t feel like it.” What is that really about? For something that’s called a “cocktail”, where’s the party?
The emotional aspects of adherence are complex. I don’t think enough people are discussing and exploring what “adherence” means for HIV-positive people — not the technical parts like selecting, dosing and timing medications, but the emotional significance. If you’re having issues with your medications (and who isn’t?), ask yourself some questions: How do you feel about meds now? What are your earliest childhood memories of taking medicine? What are your feelings about who gave it to you, how it tasted, and how it made you feel afterward? I remember my mother, the “perfect” housewife of the 1960’s, dutifully gave me the popular chewable St. Joseph’s Aspirin for Children; orange, semi-sweet and good-tasting. I played with the nifty glass contoured bottle with the pink cap the whole time I had the thermometer in my mouth (or the other place kids had thermometers then). I learned what antibiotics were when I had terrible earaches, and my mom lightly warmed the dark glass prescription bottle in a pan of water on the stove and then put drops of the soothing antibiotic in my ear, as I cried myself to sleep in pain, only to wake up feeling better. I remember as a teen when Tetracycline and Accutane, like gifts from Heaven, cleared up the acne that I was teased about for years. Even then, I saw medications as my heroes that helped me to live better. My earliest thoughts of medicine were pleasant, and that probably helps me in my approach to HAART medicines today.
What kinds of emotional issues does taking “prescribed” medication raise for you when you swallow a collection of pills? What issues about control of your schedule and diet? Do you feel like the medications will nourish you — or do you feel invaded or poisoned? Are the pills “pretty”, kind of small and cute (I love my powder-blue, teardrop-shaped Viread best), or are they large, ugly, and coldly sanitized? Are pills your “enemy” that burdens you with a daily reminder of the loss of the luxury of life before HIV, or are they the precious product of years of scientific research that sustains your battled immune system to give you another day of life, every day, indefinitely?
I think people’s feelings about medications are influenced by side effects. I always hate my meds just a little bit because they have nearly killed my sex drive, given me a lipodystrophy “belly”, caused facial wasting and raised my cholesterol. But I love them every time I have a birthday because I feel like they allow me to have a birthday at all, year after year, relatively strong and healthy. But if I had other significant, untreated side-effects, I would be angry at my meds until someone — a physician, nurse, pharmacist, treatment advocate, peer support advocate, herbalist, nutritionist — helped me to find relief in a strategy for managing the nausea, diarrhea, neuropathy, lipodystrophy, or other common side-effects.
What kind of support are you getting for your regimen? Is taking meds a daily battle to face alone, or will your best girlfriend Trisha call you at noon to ask if you’ve taken your meds and where you want to have lunch today? Do you have to hide taking your afternoon dose at work, or does the office gang see you pop pills at the water cooler and wonder admiringly how you do it every day and make it look so easy? I think my office colleagues must think what a “queen” I am because each day at lunch I pull out my bright red pill box with silver sparkles on top that looks like something my grandma would carry in her purse at church. But if I have to endure the drudgery to take these meds every day, I want a pillbox that’s bright and festive, dammit.
Whatever the answers to these questions, it’s helpful to know where your heart and mind go every time you practice the ritual of taking meds — or avoiding the ritual in the first place. If we can somehow find a way to see the ritual as a positive experience — “toasting” ourselves with our meds cocktail, in a self-hosted party for one — we don’t need New Year’s Eve – for in the words of openly HIV-positive composer Jerry Herman (who gave the world “Hello, Dolly!”, “Mame”, and “La Cage Aux Folles”), it’s enough to just celebrate that, “It’s Today!”.
© Copyright 2008 – Ken Howard, LCSW, 705 Westmount Drive, #301, West Hollywood, CA 90069
For suggestions on articles, contact Ken at firstname.lastname@example.org or call 310-726-HELP(4357)