Don’t worry, be happy (okay works too)by a fellow lifeluber - part 2 of 4
read part 1
[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.]
And grief is what I was going through, both for being recently diagnosed and for other things that were happening in my life.
Despite leading a healthy sex life, I internalized one too many “safe sex only” campaign messages from the ‘80s and ‘90s, when HIV/AIDS was new to the world. After I contracted the disease, I found I had high anxiety about my condition. Finally dealing with my anxiety is the only thing that made me feel “okay” again.
A surprising discovery that helped me overcome my anxiety and see that I already was “okay” was a book I happened to come across called Heaven’s Coast by Mark Doty. The outer jacket said it was about gay men and HIV/AIDS. I didn’t expect to get much out of it. I had grown tired of the two concepts being tied together constantly.
Don’t get me wrong, it had those topics in there. But to my surprise, I found that it was really a book about grief. And grief is what I was going through, both for being recently diagnosed and for other things that were happening in my life. Despite having been published nearly 15 years ago, Heaven’s Coast turned out to contain many still-relevant messages. Reading it opened to my eyes to the truth about HIV/AIDS in ways I hadn’t considered, and made me feel lucky to even be alive.
I also feel lucky to have been diagnosed here in Chicago, and helped at every step of the way by the Test Positive Aware Network (TPAN) and the AIDS Foundation of Chicago. These compassionate nonprofit groups, filled with individuals dedicated to the treatment, care and health of people with HIV/AIDS, were particularly helpful. Their annually published and completely free HIV Drug Guide helped me sort out the tangled web of information I was faced with.
You can download the online version of the guide here.
The simplified booklet offers an easy-to-read, factual and unbiased rundown of the current medication options in only 60 pages, covering both the “preferred” medication combinations and other medications that still exist. It includes clearly organized and easily digestible input from both doctors and activists for each drug you might take, and lists only the side effects that you really need to worry about, versus the intimidating “legally-required” side effects lists you’ll find on sites like drugs.com (still a good reference).
I also learned the names of the HAART regimens from the current list of the best medication regimens as selected by the Department of Health and Human Services (HHS). Here’s a good fact sheet explaining it.
Finally, after learning more about my condition, I understood that it wasn’t that big of a deal after all, and if I just let go of my fears and got on medication as soon as possible, I would be okay.
[Part 3 tomorrow, June 9]