So you might think that after being diagnosed as HIV positive almost six years ago and on antiretroviral medication for four years that you might get used to it.
For some people life may go back to a state of normality, but for me it certainly hasn’t. I don’t think there is a week that goes by where I don’t have some kind of issue around taking my mediation. Let’s start at the beginning…
Eighteen months ago my previous relationship broke up, mainly because my partner couldn’t (or wouldn’t) accept me because of my status. For me this was a disaster. I couldn’t cope with the idea with that someone could never love me for who I am because of what had happened. I couldn’t change my past I could only deal with what life had dealt me.
When the relationship needed, there was only one person to blame and in my eyes that was me. I had been a foolish teenager who had contracted HIV and the fact that no one could love me was entirely my own fault. In the months that followed I totally messed up my medication routine and just took them haphazardly and when I could be arsed. This clearly isn’t a good idea and wouldn’t recommend any one doing it.
At my next appointment with my consultant I found out that my HIV had become resistant to my antiretroviarals and my viral load was increasing. This worrying news shook me, reality hit home and I soon realised that I really need to get serious about taking my medication properly. I was told to stop taking my medication completely for two weeks and then return to my consultant to talk through my options.
This was some of the scariest two weeks of my life. I couldn’t help but worry that because of my stupidity I had screwed things up – again. I was worried that they wouldn’t have another combination to prescribe me. I was scared that I would become unwell and develop more complicated issues.
Fortunately this was not the case and within a week on my new meds I was back to full health with an undetectable viral load. The whole affair was a shock to the system, and I vowed never to mess it up again. But that didn’t work. I struggle every day with the constant reminder of my HIV and it’s always there in the forefront of my mind.
Daily I rely on an alarm on my phone, I even ignore that at times. Jo is a great source of support for me – he knows when I haven’t taken them and will encourage me to do so. Sometimes I still don’t want to take them, especially when I’m being a stubborn idiot., and sometimes this can cause tension between us. I know I should take it but I don’t want to, often because my depression is affecting me particularly badly that day, but Jo makes me see sense and understand things.
I have taken to hiding my medication. You won’t see any trace of it in my house, but hidden in a cupboard in my kitchen is a large stash of meds. I hide it not because I’m ashamed but just because I don’t want it laying around the house to remind me 24/7. Like seriously, who needs that reminder?
Even when I go and visit family or friends away from London I hide my pills in the bottom of my bag. It’s not only the constant reminder of my current health, but also the reminder of my past. The past is the past and I’d like it to stay that way. I’m not saying I’m ashamed but I just don’t want to be constantly reminded of how I got here.
What I would say to to my positive friends and followers is that YES it can be an up hill struggle, and YES sometimes we will fail, I know exactly what it’s like to be in a dark place and what it’s like to be scared, BUT we can support one another and be there when the hard times come. It won’t be easy – but that’s what friends are for.
Thanks to modern medicine we can now have a average life expectancy, we can be (essentially) non-infectious, we can live normal lives – but it only works if we keep taking it. Don’t give up.
James (@PositiveJamesH on twitter)