The lonely journey
I’ve neglected to update this blog with any regularity. Some of that comes from the fact that, to be honest, writing about HIV and what I’m going through isn’t always easy. There’s still a part of me that doesn’t want to face the reality that is my life.
That stems from the fact that, despite the best efforts of doctors and others with this disease, there still exists a stigma. I know I feel it, and it’s why the circle of people who know about my status is small. Despite everything that happened to me, and how it happened, I sense there are many people who I know quite well who would make the assumption that it was a result of promiscuous or reckless behaviour. That’s not the case, but alas the stigma remains. I’m not the only once facing it, and I recognize that.
Partly because only those going through the journey can understand it, and partly because I’m simply not ready to join a group or get out in the world, my journey through being HIV-positive has been, and continues to be a lonely one. Yes, I have a great circle of friends and two in particular (who know about my status) have been of great help. But I can’t help but feel like I’ve become a burden on them. It’s also hard to hear that they’ve had anger towards me for what happened. Despite it not being true, I can’t help but feel like they’re blaming me by being angry at me, and coming from dear friends, that hurts a great deal.
I started treatment just over two weeks ago. I’m taking a one-tablet treatment, which has been an adjustment. It’s tough to be on an eating schedule (you have to take the pill with food and around the same time each day). Remembering isn’t hard: I use the MediSafe app which reminds me every day to take my pill, and tracks how many are left so I know when I need to get my refill.
Starting treatment was the right thing. I started early, so I will stay in good health. Of course, there were downsides: I experienced several straight days of nausea, which was worsened by some of my favourite things (goodbye coffee and wine, for the time being). That’s a tough adjustment to make, and it’s hard to get through the day pretending everything is okay when, in reality, you feel like you’re on a dinghy in the middle of the ocean all day.
So, while things aren’t all bleak and gloomy, they aren’t bright and easy (yet). I knew this would be a hard and lonely road. I just didn’t expect it to be this hard.
Looking back on my diagnosis
First, let me apologize to anybody coming here only to see that posts are sporadic. I do intend to change that, and I hope that as I do, this space will evolve in to one that tries to share the human side of a recent HIV diagnosis, and as time goes on, the story of a (hopefully) long life living with the disease. I am not a doctor, and I am not an expert. While I’ll try to inform these posts with information from professionals, I want to stress that this blog is really a human story; it is not a medical site.
If you’re coming here and have been recently diagnosed, I want you to know you are not alone. The fear you are feeling right now is okay and it is normal. But in time, that fear will pass.
Each and every person deals with news like this in their own way. When I was diagnosed in June of 2014, things became a blur; I remember bits and pieces of the hours that followed, but very little. I also remember feeling incredibly ashamed, and confused. I was monogamous with my then-partner, and we were practicing safe sex at all times. To me, this diagnosis came out of the blue, which made it even harder to deal with because there wasn’t a “slip-up” that I could point to and say “this is when it might have happened.” My first instinct was a burning desire to find out what happened.
I do remember that evening, and not taking the subway to get back home. I walked – and it was a long walk. I remember calling my best friend (funnily enough, I reached her as I walked past my place of work) and while I don’t remember much of the conversation, I very distinctly remember saying “I don’t want to die.”
'I had the thought of not telling anybody (aside from my partner, who needed to know for obvious reasons), but I’m glad I did.'
I’m grateful I called her. I had the thought of not telling anybody (aside from my partner, who needed to know for obvious reasons), but I’m glad I did. She has been there for me every step of the way, and I can only hope that anybody reading this going through a similar experience has someone as wonderful as my friend in their own lives.
Anyway, getting back to my “I don’t want to die” comment… In hindsight, that comment showed my own ignorance towards what my life was to become. I took the diagnosis as a death sentence: after all, it was the first time that I faced the fact that my being was (and is) fragile – that invincibility is something that you only get in video games.
For me to live in a major city as this occurred is a good thing. I’m blessed that there are support networks readily accessible. I had immediate access to a therapist, who worked with me through the initial shock and trauma. She referred me to my current doctor, helped me (try) and get back on my feet and kept in touch long after the initial support was no longer needed and I was, for lack of a better term, fending for myself.
No matter where you live, connect with your local sexual health clinic if you haven’t already. They are fantastic. If you live in Toronto or the GTA, here's a link to the Hassle Free Clinic here.
Over the past weeks and months, I’ve learned that life goes on. I’ve learned that this disease, while incredibly hard and difficult to deal with, is manageable. I’m working through a lot of things with a therapist who is incredibly supportive and helpful, and I’m on the road to a long, happy life.
Before I leave you with some links that might help those recently diagnosed, let me say this to anybody reading this facing a new HIV (or really any disease) diagnosis: you are more than your diagnosis. You will come out of this stronger, more determined and (believe it or not) happy.
Resources for recently diagnosed people
Below are a few links that might be helpful for those recently diagnosed with HIV. By all means, take your time to read them. One of the things I found after my diagnosis was I wasn’t absorbing information, and when I did read, I could only handle a little bit of it at a time before I felt overwhelmed.
Just found out? – an overview from Poz.com on working through a recent diagnosis.
HIV and AIDS basics – general information from CATIE about what HIV and AIDS are, as well as information about transmission, legal ramifications and living with HIV
HIV/AIDS on Reddit – the subreddit for discussion and information sharing about HIV and AIDS. A cautionary note, I do find that people offer medical advice on here contrary to what I’ve heard from my own doctor and pharmacist. Be sure to seek medical advice only from those qualified to provide it.
I’d love to hear from you. Commenting on posts is welcome, but you can also reach me on Twitter; I’m @PlusSideOfLife. I'm also on Facebook here.
These articles previously appeared in Josh’s own blog The Plus Side of Life in March and April 2015 here. Watch for more.