I Didn’t Become a Long-Term Survivor by Keeping My Mouth Shut!

I Am My Own Best Advocate
Never hesitate to challenge your doctors—you know your body best!
by Hank Trout

A couple days before Thanksgiving 2016, I woke up with excruciating pain in my back, ribs, and chest. Now, as a twenty-eight-year long-term HIV/AIDS survivor, I’m used to waking up to one pain or another. But this pain was unlike any other I’ve ever experienced—it felt as though the muscles in my back, ribs and chest were all contracting at the same time, trying to crush me from the inside; at other times, it was an annoying ache punctuated with sudden sharp shooting sciatica-like pains. The pain increased through December, January, February, sending me to the emergency room twice, gasping for air and clutching my sides. After several blood tests and X-rays and CAT scans ruled out all the usual suspects (nothing in my lungs, in my heart, etc.), the doctor settled upon “It must be a muscle spasm” for a diagnosis.

When I first heard the words “muscle spasm,” I was certain that the doctor was wrong. I’ve had muscle spasms before—I frequently get them in my feet and legs in the middle of the night, and as an ex-wrestler I’ve had muscle spasms everywhere else. This pain was no muscle spasm. Besides, who ever heard of a muscle spasm lasting nearly four months?!

After several phone calls over the weeks, forcefully explaining that I was in worse pain than I have ever felt in sixty-four years, I finally convinced my primary doctor that “muscle spasm” was an inadequate, nonsensical diagnosis. He relented and scheduled an MRI for me. Sure enough, the MRI showed that I have much worse than a muscle spasm—I have compression fractures of my T5, T6, and T8 vertebrae. A “compression fracture” means that the padding between the vertebrae has been crushed “as if you stepped on a cookie,” my doctor said. He also said that a compression fracture like that, with no “trigger,” like a fall or anything that might explain the fracture, is one of the sure-fire signs of osteoporosis. At first, he told me that there is no treatment for the compression fracture—no surgery, no miracle medicine—the most I could do is wear a brace while we try to manage the pain. After I pressed him further, my doctor told me about a procedure called an vertebroplasty, where an epoxy is injected into the spine to replace the crushed vertebra—a procedure that scares the bejeebus out of me, but not as much as the prospect of putting up with this pain forever! And, again, if I hadn’t been persistent about treatment, I might not have known about the vertebroplasty option.

My own tenacious self-advocacy uncovered the problem and the treatment as surely as my doctors’ medical training!

This ordeal has made me ponder a couple of things.

First, it reinforced for me the importance of being your own healthcare advocate. If I hadn’t been an insistent, hard-to-satisfy advocate for myself, I might have gone through the rest of my life thinking I just had hellishly long muscle spasms when, in fact, I have osteoporosis, which might have gone undiagnosed and untreated until who-knows-when. Those of us who are not medical professionals can be intimidated by those who are—we subconsciously assume that, with their education and experience, the doctors we see always know what’s best. Nonsense, of course. Doctors are just as fallible as the rest of us. The difference is, when a doctor makes that kind of mistake—like diagnosing one of the signs of osteoporosis as “just a muscle spasm”—that mistake can cause real damage and needlessly prolong great pain.

If your doctor tells you something that you don’t quite understand, say so—make him or her explain whatever it is you don’t get. If you think your doctor isn’t listening to what you’re saying (I think sometimes my GP doesn’t understand the word “constant.” as in, “I’ve been in constant pain!”), ask him to repeat what you’ve just said. Open, honest, detailed communication with our caregivers is essential to living the healthy life we want and deserve. Some times that requires questioning your doctor’s conclusions, challenging his diagnoses.

Second, this ordeal has also made me keenly aware of how much I rely on the community of long-term HIV/AIDS survivors here in San Francisco. I have been practically house-bound—I haven’t left the apartment more than ten times in the entire four months. I’ve missed coffee on Saturday mornings with the guys from the Elizabeth Taylor 50-Plus Network [A&U, September 2016]; I missed the premiere of When We Rise at the Castro Theatre in February; I’ve missed more than one “Movies that Matter” gatherings with the guys at Honoring Our Experience [A&U, April 2016]; I’ve missed art exhibit openings at Strut, the San Francisco AIDS Foundation’s new home on Castro Street, and Project Open Hand’s biweekly luncheons for us survivors.

These compression fractures have severely clipped my wings! And even though my fiancé Rick has been an angelic caregiver and incredibly loving companion, being grounded because of this four-month-long pain-fest has reminded me how important spending time with friends can be. We survivors are much more than just a bunch of queer old men sitting around regaling each other with tales, tall and otherwise, about “back in the day…” We are active, intelligent, socially engaged men, with a common history—we are Family. And we take care of each other—just as we’ve done from the beginning of the plague, we take care of each other.

I am very lucky to live in a city where support groups flourish. But everyone who has a computer (or access to one) can find support groups for us long-term HIV/AIDS survivors on Facebook, even if you don’t live in an urban center with a large LGBT presence. Some things you just have to do on your own, like advocating for your own healthcare—loudly, clearly, consistently—never, never assume that just because your doctor has a medical degree, he or she is always right! For other things, like emotional and spiritual support, “It takes a village.” Or at least an online support group.

Never settle for less than you deserve!

Hank Trout, Editor at Large, edited Drummer, Malebox, and Folsom magazines in the early 1980s. A long-term survivor of HIV/AIDS (diagnosed in 1989), he is a thirty-six-year resident of San Francisco, where he lives with his fiancé Rick. Follow him on Twitter @HankTroutWriter.