Borrowing words from Dederich’s rehab centre never felt more appropriate.
As of 10.30pm today, or maybe 11pm, I shall take my first -but definitely not last- dose of Atripla, one anti retroviral drug combination.
It’s been 3 years in the waiting. Infected in late 2009, diagnosed mid-2010, it will have taken that long to decide it was time.
3 years of hesitation, questions and postponing the inevitable. Some decide to (or have to) start medication straight away, to try and salvage as many CD4 cells as possible, or because they have lost too many already.
Being diagnosed within months of the infection put me a lucky position, one of choice. Agreeing to take part in a study about when is best to start medication; I was also in touch with doctors (and nurses) who knew more about HIV than your average GP.
Why (not to) start?
Being in a relationship at the time of diagnosis, I wanted to start medication straight away, even though I did not need to yet. I knew medication would bring my viral load down, ideally to an undetectable level, making my (negative) partner safer. Just in case.
He refused to let me do that “for him”, or, as he put it wrongly “because of him”. Two points of view, clashing. I wanted the best for him; he wanted the best for me.
Status quo prevailed, nothing happened. For the remainder of the relationship, we just got a bit more vigilant during sex, and remained sero-discordant.
So I went down the other road, waiting for my health to worsen until my CD4 count falls under 350. That would be when I start medication.
But as of today, this still hasn’t happened. Now single, being undetectable is not a major concern either. And yet, I have asked to start. Why?
The answer is of the simplest kind: why not?
3 years ago, when I could have started, only one thing stopped me: freedom. I valued it too much. I was 24 and I did not want to bother with pills. I did not want to make that lifetime commitment.
I would have, should my partner had not been opposed to it; but since he thought I should not start unless it was absolutely necessary, I did just that. He valued my freedom and, with hindsight, he was right. I cherished these extra carefree years. I waited, waited and waited some more.
In August 2011, my CD4 count was at 380. Quite close to the 350 border. Members of the research team told me to start considering medication. But it wasn’t 350 yet. I waited.
By December of the same year, it was back up to 469. And 4 months later, in April 2012, back down to 377. Another 4 months and the downtrend was clearer, as 364.
But by the end of 2012, it was up again to 433. I waited some more.
As often, CD4 varies a lot. Any little infection or illness can affect the levels.
But I knew I had been delaying it long enough and that the next one (February 2013) would probably be the last.
I was often very tired that winter. For the first time in 15 years, I had a sinusitis. Chances are I would still have had it without HIV, like I got colds and so on before the infection. But it was the straw that broke the camel’s back, the moment I decided to fight back.
As medication strengthens the immune system and reduces the risk of transmitting the virus, one would think starting it would be every HIV-positive person’s dream. For lack of a cure, at least.
And it’s true; these 2 benefits are what I am excited about as I start tonight.
But fear is often irrational; I am frightened tonight. Not of the side effects, not of the success it may or may not achieve. I’m worried about the unknown, the uncertainty.
I’m not worried about dizziness, I’m worried about not knowing if, or when, it will happen.
I’m not worried about the vivid dreams, I’m worried about the stories they will tell, or if there’ll be nightmares too.
Tomorrow, I won’t fear anymore. Tomorrow I will know. But now is not tomorrow. People are scared of whatever disturbs their routine. People don’t like change, and change is coming tonight.
So, what next?
Who knows? Chances are: not much new. Life will go on. Life will get better, even.
I will feel stronger, probably, as I used to be at the beginning of the infection.
I will be much less at risk of passing it on. This might reassure future dates concerned about sex.
What won’t change? Well, I will continue to eat, drink, exercise, sleep, date and fall in love, have sex and cuddle. I will continue to have a normal life. After all, being HIV positive is a bit like having diab… Oh no, let’s not go there!
Being HIV positive is like facing what most women do everyday to protect themselves -and their (sexual) partners- of an unwanted parasite (ah!) in their life:
Girl friend: “How many pills will you have to take?”
Me: “One a day.”
Her: “Aaah, just like us, women, then. It’ll be fine.”
She was right. Just like thousands of women start taking the pill everyday, my burden won’t be any more or less than theirs. They manage pretty well.
She was right. It’ll be fine.