Don’t worry, be happy (okay works too)by a fellow lifeluber - part 1 of 3
Shit that works.
[I was diagnosed with HIV/AIDS at an interesting time. The year that followed was a year of personal change and exploration, and more importantly, a year that marked an important attitude shift from treatment providers. By 2010, the medical community had changed their position from “wait then medicate” to “medicate first” for anyone with CD4 levels of 350 or below. The decision made sense, but caused confusion for anyone who was recently diagnosed but had to decide on a treatment plan quickly, like me.
Now, before I could face down my HIV/AIDS and take a path toward being healthy, I had to decide on a medication sooner than I thought I would. It wasn’t easy, partially because I had been diagnosed during this time of change. I ran into many obstacles and blocks on my path toward making a decision. My level of education and awareness, combined with my young age and personal circumstances, created a personal atmosphere of slowly building pressure, until finally I realized I had just three options left: take the plunge and start on medication, go crazy, or face declining health.
This story is not so much about how I decided on a medication, but more about how I learned to let go and stop worrying about the whole thing. I dedicate it to the kind people at Test Positive Aware Network (TPAN) and the AIDS Foundation of Chicago, and to my wonderful boyfriend, who helped make its telling and in part, its resolution, possible.]
I felt like I was caught between generations.
I lacked the highly aware and only-too-well-versed attitude of people older than me, who in some cases were forced to watch their entire groups of friends die in a matter of a few years while clinicians, without the benefit of research, wrung their hands and shrugged their shoulders. But I also didn’t adapt the blissfully unaware and purposefully unknowledgeable attitudes some people my age and younger seemed to fall into. My generation, forced to watch as our friends became willfully ignorant and engaged in risky behaviors just to say they’d done it.
And then there was the medical community, which seemed to own countless and ever-changing opinions about treatment. I didn’t have health insurance or a regular doctor, so I was forced to look after my own health and medical decisions. Having the virus meant I could no longer stand back, and actually had to deal with all those different opinions.
Growing up, my head had been filled with what were now outdated notions. My mind swirled with "Philadelphia"-era notions of what HIV/AIDS was, false beliefs, anxieties and misinformation about new treatments and the now “chronic but manageable” nature of the virus. I didn’t understand the advent of HAART medication. For those who still don’t know, HAART stands for “highly active retroviral therapy,” which I came to understand mostly meant “shit that works.”
But were all these new notions about HIV/AIDS as “no longer serious” just parlor talk, designed to help us reclaim the progressive sexual attitudes of the 1970s in a frenzied, starved sort of way, or were they real? I wasn’t sure.
To complicate matters, there was December of '09. Prior to that date, a CD4 count of 300 was just enough to be teetering between advising medication and not prescribing medication. After that date passed and the study came out, it was treatable immediately. My CD4s had hovered around 300 since diagnosis. I had good (and great) doctors telling me one thing before a certain date, and the exact opposite after a certain date, just because a study came out? Is it any wonder I took a long time to decide on a treatment option?
Old patterns of thinking die hard. For years I had been hearing the “wait then medicate” mantra over and over. I started to believe if I waited, maybe the whole thing would just go away and I would be “okay” again.
And I desperately wanted to be “okay” again.
It took me more than a year to realize I already was.
[Part 2 tomorrow, June 8]