I’m going to go out on a limb and assume something. Don’t get mad if I’m overstepping or overstating. I know it doesn’t apply to everyone, but it’s common enough. It’s just a little something that I know to be true for me, and over time have found to be true for others. If you’ve been taking antiretroviral therapy (ART) for any longer than—let’s say a year and a half or more—you’ve experienced some form of pill fatigue. Brand new to HIV or a long-term survivor, you’ve felt it, even if it was just a fleeting emotion. I’m using it as an all-encompassing term to include all sorts of emotions and feelings about HIV medication.
It could be that you’re sick and tired of taking a pill that literally makes you sick and tired. Physical manifestations of HIV medication side effects are real. Maybe you have been taking multiple pills since the Bangles were walking like an Egyptian across the charts and you’re just over it. A person having to hide medication from family and friends as you hide your status can create not only pill fatigue, but pill anxiety and adherence issues. Or, like me, you just feel a vague sense of resentment that you have to pop a pill to stay healthy. To say nothing of the agitation and irritation of dealing with refills, insurance, and co-pay melodrama. Mental and emotional side effects of ART therapy are real.
What is completely unimaginable and overwhelming for one person may be a walk in the park for another. Be it mild fatigue or full antipathy, it doesn’t make you a bad person. It means you are human, and things are proportionate to your life experience and tolerance.
Mind you, not one of those things or examples mean that I don’t feel grateful for the strides that have been made in HIV care. Don’t think for one second that I don’t appreciate and mourn for all who came before me who’ve succumbed before there were viable, less toxic options for helping us sustain healthy lives. It’s not about that. I know even having the option to take them is a blessing! I’m just honest enough to admit that there have been times that I have been so tired of taking pills that I considered stopping.
I know I’m not alone in that, because I’ve had conversations with other survivors who feel the same way. Some of them (through no fault of their own) have made me feel ashamed of my resentment because of all of the things that they have been through. The side effects, the physical changes the medications have wrought on their bodies, the fact that they thrived on a particular medication while losing friends who did not. That is a different level of fatigue and it has my full respect.
The truth still stands though, that everything is relative. What is completely unimaginable and overwhelming for one person may be a walk in the park for another. Be it mild fatigue or full antipathy, it doesn’t make you a bad person. It means you are human, and things are proportionate to your life experience and tolerance. Having said that, if you’re a person who feels guilt over pill lassitude because you have survived and someone else did not, may I suggest that you release that guilt and accountability? It’s not your burden to bear.
Science and the evolution of it, and the passion of the people behind it, have made it so that we have a number of medication options today that weren’t available years ago. In between 2018 and 2021 alone more than nine medications were approved in the fight against HIV. Some were just updates and improvements on current meds, others have brand new mechanisms of action. They are new possibilities, right? Even if I’m not always ready to jump on them (I’m a fraidy cat about change), I love the idea that newly diagnosed people have choices. It’s wonderful that people who have multiple viremic strains or medication class resistance still have options to stay healthy. It’s that care overall is solution-based now rather than desperation-driven, if that makes sense. The new long-acting injectable alternative to a daily pill offers the prospect of even more freedom from the daily grind of adherence. It may even help eliminate some of this angst about taking your meds.
Forgive my presumption about your relationship with your medication. In case I’m right though—it’s okay to feel that way. It’s okay to admit it. It’s not okay to get stuck in it and let it control you or keep you from your promise and potential. You’ve earned that. Do what I do. Roll your eyes and sigh deeply—BUT TAKE YOUR PILLS. Then move on with your day, and be happy another one was granted to you. Somebody needs somebody like you.
Be well. You matter.
Bridgette Picou is a licensed vocational nurse in Palm Springs, California. She is also an active HIV blogger and contributor to the CDC’s “Treatment Works” public service campaign. Finding a voice in advocacy and activism is a natural progression, since she feels that every time she fights for someone else, she affirms her own life.