I will always remember that I was diagnosed as HIV positive on Oct. 4, 2012. 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 (general practitioner) 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. As a health professional, I know the value of getting treatment for ANY health problem, although like many others, I've had more than one unsuccessful adventure with courses of antibiotics! Finish a whole course? Well, yeah -- I know I'm supposed to, but who can remember to take a tablet EVERY day? Who indeed!
So I said, "Yes, I want to go straight on meds."
I remember picking up my first prescription from the sexual health clinic (the only place in my home city that it can be dispensed). And there was plenty of head chatter going on THAT day, for sure.
From the debate about being "exposed" in that waiting room ("But seriously, what if I DO see someone I know?"), to the fact that I was getting this very expensive medication totally free of any charge. To the nasty and self-critical voice -- "So! Now you're just dirty and contaminated," -- battling with the kinder and more forgiving one -- "It really COULD happen to anyone, you know!"
Back then, I didn't know a large number of people who were openly HIV positive, but a few close friends were. So I had already had a few conversations about medication. One close friend was on Atripla [efavirenz/tenofovir/FTC] and he described quite a lot of side effects, physical upsets and the most vivid and horrendous nightmares for several weeks (he might have even said months!). And because I'm a complete sissy when it comes to horror movies or TV programmes or anything with blood, guts and gore, you can imagine this was a tad disconcerting. Luckily, after discussing this with my GP and, due to the fact that I hadn't ever suffered from depression (nor had any family members with depression that I knew of), I was able to go on Eviplera (known as Complera [rilpivirine/tenofovir/FTC] in the USA, I believe).
So, it was probably about 7:30 or 8:00 p.m., and having filled out my prescription after work that day, having eaten a pretty chunky looking sandwich ('cos the blurb said I had to have at least 500 calories and, since I hate cooking, typically I eat my main meal of the day at lunchtime), I took out the tablet, put it in my mouth and ... hesitated. That bloody inner voice again. "What exactly is this the start of? What is actually gonna happen to me when this hits my stomach and then my blood? Is this the right thing to do? Oh f*** it!" GULP ... Yes. I swallow.
And that was it, really. I've been taking my 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? Then no one need know, but harder to stick to on the weekends when often I don't even have breakfast and brunch can be anytime between 10:30 a.m. and 2:00 p.m.
Symptom-wise? A bit of an upset tummy for a couple of weeks (and the very occasional sporadic diarrhea, but nothing earth shattering or life threatening!). I think my general mood suffered a little. Often on sunny, summer days, my favorite cheesy-trance music belting out really loudly in the car, I would experience the euphoric sensation of 1,000 butterflies having a party in my tummy. A friend who has similar experiences calls these her "bliss bubbles" -- a term I have shamelessly stolen. For a year or more I didn't have even one bliss bubble. But about six months ago, one bright, sunny day, I noticed the strangely pleasant sensation creeping into my tummy again. And I was delighted. So I'm hoping either a) I've adjusted to the meds, or b) it was part of my grieving process -- or maybe it was a bit of both. But I'm pleased to say, I've had more bliss bubbles since!
Looking back now, after almost two years on treatment, occasionally, I feel a little disappointed with myself. Should I really have started on the medication so quickly? Should I have read more, learned more? Am I playing into the hands of big pharma? I don't know.
I do know that the main driver of my decision to start medication was my sadness and shame at having become infected. (I struggled to find the right word there -- "disgust," "revulsion," "disappointment" and "hatred" didn't fit -- and I realize now, that it was shame and genuine sadness). And this is something I still struggle with from time to time. I didn't like thinking of myself as "dirty and contaminated" back then -- and I still don't. I wanted to become undetectable as quickly as possible. And I still feel somehow "cleaner" (and no, I don't feel comfortable writing that, but it is true) because I have an undetectable viral load. I guess from this perspective at least, I am a work in progress!
But, nowadays, I never have any trouble swallowing.
What was your first pill? Whether it was AZT or Atripla, we want you to tell your story! Write out your story (between 200 and 1,000 words, please!) or film a YouTube video, and email it to email@example.com. We'll be posting readers' My First Pill stories here in our Resource Center on Starting HIV Treatment.
Read other stories in this series.