When you begin treatment for HIV, taking that first pill is a big deal. Here, five positive people recall the experience.
I lost my partner to AIDS in 1994. I was still negative. I volunteered for AIDS organisations and lost so many friends. I saw all the experimental medications come and go, and the toll it took on all their lives. So the day I was diagnosed as positive I just became numb. I was numb for about two weeks. Then I heard that everyone diagnosed as positive regardless of T-cell count should start medication immediately. Well, my count had dropped that month from 650 to 475. I guess it was time to start anyway.
Every night for three nights I tried to take the pill. I would open the bottle and stare at it or hold it in my hand. How could I take a pill that would seal my fate? If I took that pill, I would be admitting there was something wrong with me. The fourth night, a friend came over for dinner. How could I take the pill in front of him? Tears were rolling prior to dinner, and then he arrived. We sat down and I heard my partner's voice in my head, "Just take the damn pill will you!" I did. I’ve not missed a dose yet. I have never had one side effect. My count is over 750 each visit, and the viral load is undetectable.
Oddly enough, the question of whether or not I would go on medication wasn't really that big of a deal. Officially, at that time, there were still restrictions about when I could actually start treatment. You had to have a fairly low CD4 count (although this restriction has since been removed). But my GP made it perfectly clear that — while it would always be my choice — he was very pro-treatment as prevention and would support me starting meds, regardless of my current health status. And to be honest, for me, it felt like there really was no question.
I remember picking up my first prescription. I was on Eviplera. It was probably about 8:00pm and having eaten a pretty chunky looking sandwich ('cos the blurb said I had to have at least 500 calories), I took out the tablet, put it in my mouth and ... hesitated. That bloody inner voice. "What exactly is this the start of? What is actually going happen to me when this hits my stomach? Is this the right thing to do?” GULP. I swallowed.
And that was it, really. I've been taking Eviplera (almost) religiously ever since. Yes, I've missed a couple of days. Yes, I've had a bit of trouble locking it into my routine: do I have it at dinner and struggle with the occasional social exposure or potential questions? Or do I have it at lunchtime? Symptom-wise? A bit of an upset tummy for a couple of weeks (and the very occasional sporadic diarrhoea) but nothing earth shattering or life threatening!
My first pill was accompanied by a whirlwind of emotions: anger, depression, happiness, denial and sadness. The idea that, before this, I had never taken any pills other than over-the-counter medicines took me so long to get over. I remember telling myself that I didn't have to take the medicines if I didn't want to, although I knew deep down I had to. I called my doctor and told her that I was having problems with taking the pills. She assured me that I would be OK and that my numbers were not the best due to the years of not knowing my status so my body had a lot of catching up to do (my viral load was 101,500 and I had a CD4 count of 51). Before taking my first pill, I had mentally defeated myself into believing that I was just delaying the inevitable. After hours of fighting I managed to take my medicine. For anyone who's having trouble with their meds, it's an inner battle. But don't give up. Don't give in. It will get better!
I took the HIV test because I was dating someone who was the man of my dreams and he shared his positive status with me before we had sex. I went to my doctor, one of the HIV specialists at the time, back in 1986. He said I should start on AZT because I had just 236 T cells. He said I needed to start right away. But I had friends on AZT and they had terrible side effects. I listened to my gut and said, “No”. Instead, I waited and watched my T cells drift down.
Finally, I got to the point where I had to do something. It was 1988 and I wasn't dead yet, but I was symptomatic. I agreed to start AZT, but I told my doctor at half the dosage. We argued, but this is my body. It made me sick, but I could stand it and I could continue to work. I watched more friends on the full dose get sick and die. I did all I could to stay healthy: I ate right and worked out. Eventually, I stopped AZT and started on the notorious D drugs. (Thanks for neuropathy, medical science! My feet and hands just love you!) I am still here though. My doctor isn't. He died in 1989.
It was 2007 when I got my HIV test results from my doctor. He said to me, “I’m sorry, but your HIV test came back positive.” My life was destroyed, I felt like I just got a death sentence and I was thinking about how many more days or months I had left in this world. I went to visit a specialist and she tells me that I am actually an AIDS patient because my CD4 count was only 140 and my viral load was 165,000. I didn't know what those numbers meant, but she explained everything to me and told me how advanced the condition was. I was devastated; tears came down my cheeks. She looked at me and said, “Cry all you want, and vent your pain, but it is not a death sentence like everybody thinks. There are new medications and none of my patients has ever died.”
She put me on a pill called Atripla because she was completely sure it would work well on me. Atripla has been my main medicine since then and I have not planned on changing it because I get basically no side effects. Three months after taking Atripla I was undetectable and my CD4 count had increased to 350. Currently, my CD4 count is 875 and I am still undetectable, so I am happy and I live like a normal person. I don’t even think about being HIV-positive. I totally forget about it and try to live my life as any other person. I exercise; I go to parties and clubs. HIV is not stressing me. If you are positive, be positive about your life, take your medication on time and forget about HIV.