This article with interviews by RonniLyn Pustil, Sophie Wertheimer and Darien Taylor first appeared in The Positive Side, a publication of CATIE, here.
Une version française est disponible ici.
JONATHAN POSTNIKOFF, 31
Treatment outreach coordinator
Positive Living BC
Diagnosed with HIV: 2010
CD4 count: 980
Viral load: undetectable
Taking ART for: 5 years
I had read blogs about atrocious side effects and met people from the early days of treatment who told horror stories of a time not-so-long passed and what I thought I had to look forward to. For me, this is what HIV treatment represented. Not to mention that, once made, this decision would follow me for the rest of my life, keeping me to a schedule I’d never be able to forget, a constant reminder of the microscopic organism using my own body’s cells against it.
For these reasons and others, it took me a year and a half to become comfortable enough to begin HIV meds, to feel confident enough to take my pills at the same time each and every day.
At first it seemed like an arduous task. I took my meds in secret, hoping they would work but skeptical they might not, constantly shrouded in worry that I might have forgotten to take my dose. As time went by, it became a part of my routine, as second nature as brushing my teeth or going to the bathroom. I realized that all of the fears I had had were no longer relevant, at least not for me.
When my viral load became undetectable a month after starting treatment, it gave me the sense of empowerment I had lost when I was first diagnosed. My fear and anguish dissipated and I felt more like the person I used to be.
Five years later, without having missed a dose, I don’t view taking my meds as a reminder of something negative but rather as something that gives me control over my health—for maybe the first time ever.
ART is like a supportive partner whose help I can’t live without.
GLADYS K., 40
Diagnosed with HIV: 2006
CD4 count: 966
Viral load: undetectable
Taking ART for: 4 years
When I started taking HIV medications, I had a love-hate relationship with them. I had to start treatment in 2009 because I got pregnant.
As much as I had read and learned about the meds and their side effects, I was freaked out. I didn’t feel ready to start but I didn’t have a choice, as there weren’t many choices for pregnant HIV-positive women. I had to suck it up for 40 weeks.
I didn’t have morning sickness or any issues with the pregnancy itself, but I had the worst side effect from my meds. My diarrhea was so bad that I wished I had morning sickness instead. My stomach turned just looking at the pills. I honestly thought my intestines were going to come out. But I did it for my baby. I wanted my baby to be OK, and it worked—at the expense of my gut.
I couldn’t wait for my baby to pop. The day that baby was out, I was done with the meds. My doctor knew I was stopping my meds and we were going to revisit the issue when I felt I wanted to start taking them again. My CD4 counts stayed pretty high until late 2011, and then my doctor and I discussed what meds were available.
Because of my previous experience on HIV meds I really wanted to make sure that I was mentally prepared this time. My doctor was very supportive and instrumental in that process and so was my pharmacist. In 2012 I became pregnant for the second time. My specialist and I immediately sat down and discussed which regimen would likely work best for me.
I started my new meds in August 2012. Thank goodness HIV meds have improved. I experience no side effects whatsoever. My meds and I are now getting along just fine. My adherence is not 100% but I can say that this is the longest relationship I’ve had. I take four pills once a day, and I decide when I take them, whether with or without food. I’d like to eventually try one pill a day, but I’m in no rush to switch.
RICHARD AUGER, 57
Volunteer at an HIV community organization
Diagnosed with HIV: 1994
CD4 count: 1,400
Viral load: undetectable
Taking ART for: 21 years
I started taking HIV meds shortly after I was diagnosed and I’ve had a long friendship with what I think of as my “vitamins.” I view them as vitamins because when you think of them as pills, you have sickness in mind. I try to put sickness aside and tell myself that I’m taking vitamins for my health.
When I started ART, the medications were worse than the disease itself. Some pills made me really sick, so I changed regimens frequently. And there were too many pills to swallow. I also had liquid meds, which were disgusting! Some meds gave me frightening leg cramps and with others my head never felt clear. When I stopped those, it was like returning to this planet. Back then, I had no desire to take my meds. Some days I felt like I was asleep at the switch, in a dream. I slept almost 24 hours a day. It was awful.
After living with those side effects for too long, I asked my doctor if any new treatments were available. Once I switched to the new meds, things got so much better. The drugs were easy to take, the side effects were much better. Apart from a bit of a cholesterol problem, I don’t have any issues now.
Over the years I’ve been on so many different meds, which messed me up a bit, but I persevered and stayed on treatment. It’s been 12 years now that I’ve been in this fairly stable relationship. I love life!
I know many people who say, “I’m fed up with taking pills,” and they stop taking them. But it doesn’t bother me anymore. It’s not that complicated: We eat every day, so we can take a pill every day.
For someone who is just starting treatment now, I would advise them to not worry about it. If you take it as you’re supposed to, you will have an undetectable viral load and you can live a pretty normal life.
I think of ART as a friend because it keeps me alive and in good health. It allows me to keep going, to do things that I enjoy. I can do volunteer work and help people. Without my meds, I wouldn’t be here and I wouldn’t be able to help others. When you have a friend, you want to see them every day if you can because they help make your life good.
ANN FAVEL, 49
Diagnosed with HIV: 2008
CD4 count: 500
Viral load: undetectable
Taking ART for: 3 years
My antiretroviral medication, Complera, is kind of like an old flame who has come back into my life. Let me explain. I used to be a heavy opiate user and now that I’m off those drugs, I don’t like putting meds of any sort into my body. I can’t avoid the feeling that they are going to cause problems at some point.
I told my doctor I didn’t want to take a lot of pills, so when he told me about a single pill combination, I agreed to start that.
So this old flame came back into town. He said he had changed. I worried that he could hurt me, because he has in the past. I have to admit, I also felt some love for him. I know his faults, but I know the good in him, too.
It’s complicated. Sometimes he does make me feel bad. I have stomach problems—acid reflux, heartburn and sometimes when I eat, I get the heaves. A while ago, I had to go to a gastroenterologist and get a scope to see what was going on.
Complera and I have been together for about three years now. I have learned to trust him. He was my first. I’ve been true to him. Every morning, as soon as I get up and eat my breakfast, there he is.
At first things were easy, but lately he’s causing me some pain. Sometimes I feel like I’m tied down to him. There are plenty of days when I feel like he’s stayed too long and I’d love to give him the boot. But I understand that in many ways we’re good for one another.