When Your HIV Regimen Makes You Sick, Speak Up
- When I first began taking antiretroviral medication after being diagnosed, my body just didn’t want to cooperate. Unfortunately, what I remember from my first year of being HIV positive was a lot of trial and error, which involved me being sick a lot. I was even hospitalized from one combination that, apparently, I was allergic to.
My first thoughts were that this was just how my life would be. I was more than disillusioned, and could not imagine taking a pill and not having it negatively affect me. I remember begging my doctor to let me try a one-a-day pill and when he agreed, I sentenced myself to another year of awful side effects because I was too timid to question my doctor. The doctor knew best, right? I just assumed that waking up nauseous each morning and having occasional stomach troubles were side effects I would have to learn to deal with, so I did.
Being newly diagnosed, I chose not to immerse myself in all the information that was readily available to me. Instead, I became reclusive and almost subservient to my primary care physician when it came to anything related to my diagnosis. If he told me to take a pill while standing on one leg and drinking pineapple juice, I was going to do it. Obviously, such a ridiculous request was never asked of me, but if it had been, I don’t doubt I would have run to the store to buy some juice. Instead, what I got were a lot of doctor’s orders that were most likely in my best interest, but didn’t necessarily guarantee success for me personally. But since I hadn’t taken control of my personal health decisions in tandem with my doctor, I allowed myself to live in a state of discomfort.
Each day that I woke up and ran to the bathroom, I was reminded of how much my HIV diagnosis was taking over my life. It was always on my mind, and each week that went by, I continued to convince myself that this was normal and that I was just going to have to live with it. I mean, at least I wasn’t going to die, and if having that statement be true required me to be a little sick each morning, so be it.
- It sounds completely insane to me now, but I, not unlike others who are newly diagnosed, was completely vulnerable and naive. After each doctor’s visit, my blood work came back with improvements — the medication was working, just like the doctor said it would. When I finally mustered up the courage to discuss my morning nausea and diarrhea, the doctor prescribed another medication to help. At that time, this sounded rational, but what wasn’t rational was that this additional medication was given to me eight months after starting that new regimen of antiretroviral meds.
What I know now that I didn’t know then was that HIV medication should not keep the patient suffering in silence. Side effects are common, but should subside after the first few months of taking the medication. Long lasting and ever present side effects should be a red flag to stop using that particular medication. That being said, any decision regarding medications should be made with a medical doctor, but unless you know your options, it’s very easy to just let others make the decisions for you.
Nothing is more empowering than knowing everything there is to know about something. When I took the time to learn the science behind what antiretroviral medications were and how they worked once I took them, I felt a lot better about popping a pill into my mouth each day. But I was also very aware that these chemicals might be to blame for my morning sickness. It was then that I really took the time to learn about all the available medications that were out there. Each medication has risks and side effects, and I was perfectly OK with knowing that. I was also ready to decide for myself which medication I wanted to give the opportunity not to make me sick each morning.
I remember walking in to see my doctor with the utmost confidence because that was the day that I was going to consult with him about changing things up. I was knowledgeable, I was prepared and I was anxious to get the conversation started. The moment I presented my doctor with the idea of switching, I was immediately questioned as to why. He made his case showing me the lab work and how healthy I was. I almost had a moment of weakness where, again, I felt like the doctor knew best. But luckily, after I explained my long-term side effects and how the additional medication he prescribed wasn’t really helping, he agreed and together we made a decision to make the switch.
My personal experience reflects a pure lack of confidence, as well as knowledge, and a genuine fear to contradict a medical professional. For almost a year, I woke up each day, sick to my stomach, because I refused to consider for a moment that something just might not be right. I didn’t want to bother with learning about my options, and I failed to tell my doctor exactly what was happening. In retrospect, being the outspoken person I now am, I can’t believe how I caused myself to live the way I did, for such a long period of time in my life. Today, I always walk in to see my doctor with pure confidence and absolutely no fear, and I probably divulge more information than needed, but at least now I feel great each time I walk out of there, knowing that I’m in charge of my body.
David Duran is a freelance journalist and writer based in Brooklyn, N.Y.