It’s Never Just HIV
HIV Leads the Parade of Several Debilitating Conditions
by Hank Trout
As I write this, I am in the foulest mood I can remember ever being in. That’s probably because for the past week, I have been sicker than ever before (still am). In addition, during that time, I have received the worst diagnoses I’ve gotten since my original diagnosis with HIV.
I know I’m not alone in this. Part of being a long-term HIV survivor means getting used to receiving absolutely devastating, frightening diagnoses one after another. None of us has just HIV. The virus brings with it changes in bone density, which leads to osteoporosis, which can lead to spinal fractures (counting the one I have now, I’ve had five compression fractures in my spine); it brings neurological changes in the form, at worst, of neuropathy; either the virus or the toxic medications we take can lead to lipodystrophy, a hardening of the fat cells; it brings nausea and cramps and diarrhea caused by the medicines we swallow every day.
Thus, if anyone says to you that “HIV isn’t that big a deal any more,” feel free to laugh at him and walk away.
I share these things not because I think my experience with HIV is unique or special. It isn’t. My experience mirrors that of nearly everyone else who is HIV-positive; some folks have even more horrendous experiences than I. For thirty years, I have avoided the most horrific of the “side effects” of HIV; for instance, I avoided Kaposi’s sarcoma while many of my friends succumbed to it. And I am grateful for that.
However, just in the past two weeks, I have been diagnosed with two of the worst HIV side effects—lipodystrophy and neuropathy.
The lipodystrophy I had suspected for some time. Over the last year or so, my stomach has gotten fairly huge while the rest of me has lost weight. I had asked my previous doctor if this could be lipodystrophy. He pooh-poohed the idea, telling me it was just “middle-age spread.” I knew that was nonsense but what could I do. But last week when I brought up the issue with my new doctor, he agreed with me—middle-age spread never “spreads” quite this big; it’s lipodystrophy.
For those who might not know, lipodystrophy is a condition where the fat cells in the body all gather in one place—the back of the neck, the stomach—and then harden. We’ve all seen individuals with large humps on the back of their neck, due to lipodystrophy. In my case, the fat cells decided to move to my stomach and build a condo—I look like an avocado with two pencils stuck into it as “legs.” I cannot wear regular pants because of my misshapen belly; I can wear only pants with a drawstring. It is not only very unattractive and embarrassing, it is painful—it hurts, constantly, where my inflated stomach has pressed the other organs up into my ribcage.
Worse is the diagnosis with neuropathy, which is damage to the nerves. When it is bad, it feels like there’s a fire burning inside my legs, and someone is trying to put out the fire with an ice pick. It burns and stings so badly that I cannot stand or walk. Early diagnosis and treatment of peripheral neuropathy is important, because the peripheral nerves have a limited capacity to regenerate, and treatment may only stop the progression, not reverse the damage. I’ve seen “neuropathy supplements” on the Internet, but most of them seem to be based on junk science. Thus, it’s just one more thing that I, and thousands of HIV long-term survivors, must simply accept and suffer.
Please note, and believe, this column is not a plea for sympathy. I’m simply making a record of the many frightening and painful conditions that all of us long-term HIV survivors have to cope with, in one combination or another, every day. Before my diagnoses, I knew all about lipodystrophy and neuropathy because so many of my HIV-positive friends have suffered from one or the other for years. I thought I understood the ramifications, the pain. I was wrong.
So the next time someone says to you, “HIV is not big deal anymore,” you’re probably talking to a numbskull. React accordingly.
Hank Trout, Senior Editor, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a forty-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.