How I Handle One of My Biggest HIV Fears

By Shawn Decker

4 min read

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.

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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.

Switching medications

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.

Another switch

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.

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Getting tested

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.

And ADHD.

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!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The H-I-V.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Heather Renee Moderator & Contributor
<inline-mention username="Shawn Decker" user-id="6692326"/> I am so sorry to hear that you had to go through so many medication changes. Your article makes me realize how lucky I am that I only had to change medications once so far. I did not know that HIV affected your brain. This is something that I will have to look into. To be honest, I deal with a lot of brain fog and problems with my short-term memory. I always assumed it was from my chronic migraine and the medication I use to treat said chronic migraine. - Heather R (team member)
1. Shawn Decker Contributor
 <inline-mention username="Richard Faust" user-id="7004440"/> Thanks so much for sharing. I've seen a ton about brain fog since COVID. Here's to hoping the research and potential treatments continue to move forward.
2. Heather Renee Moderator & Contributor
 <inline-mention username="Shawn Decker" user-id="6692326"/> Unfortunately, they think I was positive close to 10 years prior to being diagnosed. I did not start treatment until I was hospitalized for PCP pneumonia and almost died. If it was not for developing pneumonia, who knows what would have happened to me. To this day, I still live with chronic migraine. They really thought that it would improve once the HIV was controlled but it has been years and the migraines are still uncontrolled. Thanks for listening. - Heather R (team member)
Khafre Kujichagulia Abif Moderator
Alafia (Peace) <inline-mention username="Shawn Decker" user-id="6692326"/> We share sone simular concerns regarding aging, HIV meds, and the brain. We need more resource on long-term Survivors and the brain. I am trying to stay active and keep my brain sharp but there are things I simply cannot remember. I feel sad because some of that was really good. Thank you for sharing this article. Khafre (H-I-V.net Team Member)
1. Richard Faust Community Admin
 Hi <inline-mention username="Khafre Kujichagulia Abif" user-id="2046187"/>. Yes, there definitely is a need for more research on long-term survivors and aging and the brain. The research is starting to happen. This article discusses a study out of UCLA on this topic: <a href='https://www.uclahealth.org/news/hiv-study-brain-aging' target='_blank' rel='noopener noreferrer ugc'>https://www.uclahealth.org/news/hiv-study-brain-aging</a>. The good news is that when "Researchers looked at cells in the brains of the subjects under the microscope. They did not find any differences between those who had HIV and those who didn’t." They also note that HIV-associated neurocognitive disorder (HAND) impacts less than 5% who are on cART, so it does appear that modern treatments make a difference. They also acknowledge just how little research there is and that there is fare to go. Hopefully future research will lead to further insights and treatments. Best, Richard (Team Member)