How I Handle One of My Biggest HIV Fears
Last updated: September 2023
Nothing makes me wince more than brain studies related to HIV. It seems like the news about HIV's impact on our skull meat is always bad. As a longterm survivor, I worry about the impact that decades of life with HIV have had on ability to think clearly. To remember simple things like, "Why did I walk into this room?"
Don't get me wrong - I am beyond happy to be here. I'm undetectable and in the best physical health of my life. I have made strides in addressing depression and other mental health needs. That part of the brain is functioning well!
I understand that I'm nearing 50. Some of what I'm experiencing is the simple effects of aging. I'm more than here for it, but I still get a shiver down my spine when results of the latest research on HIV and the brain are released.
Honestly? I never make it beyond the disheartening headline.
The start of my brain woes
My brain woes started shortly after I began taking HIV medications in 1999. I was treatment naive and fancied myself a "longterm nonprogressor," which sounded cool at age 20 but rings sad to me at 48.
Anyway, my low t-cell count necessitated a change in identity. To my delight, the virus was sent into retreat mode - my viral load plummeted and my t-cell count steadily rose... And rose... And rose! I was able to travel and educate alongside my love, Gwenn, in ways that wouldn't have been possible before I started on meds.
The main issue was the side effects. I made my first HIV med switch after just 10 months. I can't tell you how relieved I was when I no longer had stomach issues, to put it politely.
I found out I was living with HIV in the ______.
Physically, the switch was a success. But after a year or so, I noticed the mental fog. Especially when it was hard to follow along with a conversation. This was particularly embarrassing since I was a friggin' public speaker. Sometimes, during Q and A, I would get lost in my own words.
"What was the question again?"
Thankfully, my educational partner is also the love of my life, and Gwenn got good at jumping in for the save. I would rebound gracefully with a self-effacing joke. Laughing with the audience helped, but that nagging worry about why my brain was letting me down lingered.
My 20s were going better than I could have ever expected and I was enjoying the best physical health I had ever experienced. This made it easy to brush aside the mental slog of it all.
At least for awhile.
Being on effective treatment gave me a long-range lens from which to imagine a future. The brain fog made me fearful of how things would be down the line. But after making another switch, I finally felt like I had my head on my shoulders again, until I "failed" a pretty big test.
I was under a lot of self-imposed pressure to finish my book, My Pet Virus: The True Story of a Rebel Without a Cure. Particularly how to end a story that was still very much being lived. I was racking my brain for some kind of tale that I could wrap into a nice little bow.
Embolden by the success I had on my HIV medications, I decided to take "a drug holiday" to fully clear my head, and not blow a big opportunity with the book... Well, I did get my ending. Which was me ending up in the hospital after a dramatic viral rebound caused by stopping meds to finish the book.
I was tested for HIV, because I was in one of the early high-risk groups - people with hemophilia in the 1980s. Even though the test came back positive, I was spared the trauma that comes with the decision to get tested, and the fear of what the result might be. I was a kid, that weight fell on my parents' shoulders.
For me, going in for cognitive tests in my early 40s held that kind of dread. But, even though I was worried about the results, I was relieved that I had at least get some kind of answer as to why I seemed to be short-circuiting with more regularity with each passing year.
After completing the tests I was happy to learn the results, which were that I was doing pretty well for someone my age living with HIV.
I had never been happier to be diagnosed with something. Overcoming my brain fog fears and being willing to find out the truth wasn't easy, but doing so led to being treated for ADHD. And that was a real game changer.
10 years later
These days, I realize the difference between a good brain day and a bad one. And a lot earlier, too. Well, let me rephrase that: I wake up every day to a My Brain Day. Labeling it "good" or "bad" isn't fair. It's too simplistic.
I know I'm experiencing some of the natural effects of aging. I also acknowledge that, as someone who has lived so long with HIV, I am more susceptible to experience a decline in cognitive health as I continue to get older.
And I'm here for it as long as I'm here for it!
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