I first noticed the pain in college. Very occasionally, after sex, I would feel an intense burning sensation. Panicked, I would immediately fear an STD—despite regular testing and being in a monogamous relationship—and become convinced that somehow one had snuck up on me from a previous partner. Nothing would turn up after my visits to the clinic, and the pain wouldn’t occur again for many months. Chalk one up to life’s little quirks.
But a few summers ago, the pain became more persistent and, even more troubling, unmoored from intercourse. I started feeling the burning sensation and other pains all across my pelvic region. Although things seemed worst during or after sex, it never really went away.
Repeated STD testing turned up nothing. I kept hoping it might. There’s a cure for gonorrhea, and shame seemed a small price to pay to explain away my pain. I imagined that the awkward phone calls requisite upon such a diagnosis would be vastly preferable to discomfort without end.
I was just going to have to live with it, because there really didn’t seem to be an alternative. Or there was a more terrible alternative. There was the possibility it would get worse, that the steady hum of pain would grow to be a cacophony. But best not to think about that.
I began visiting urologists and other specialists. I would describe my symptoms and, invariably, they would ask if I’d received STD testing. After that suggestion, they were a spent force. There are few experiences as chilling as hearing a doctor admit that they simply don’t know what is wrong with you. “Sometimes people just get pains,” my doctor told me nonchalantly. I don’t know if I’ve ever hated anyone as much as I hated him in that moment.
IN HIGH SCHOOL AND college I calmed existential angst by reading Camus and, in my most desperate moments, dabbling in Quakerism and Buddhism. But all I really faced then were the trials of growing up. In those circumstances it is easy to nod sagely, and agree with the Humphrey Bogart-looking Frenchman: Why yes, there is no grand unifying order and the fight against the suffering and injustices of life can never be won, but must be fought nonetheless!
It is much easier to embrace such a philosophy when you aren’t subject to brute bad luck and random biological cruelty.
The pain became impossible to ignore. There seemed to be no rhythm or reason for its intensifying or slackening. Almost worse than the discomfort was my fear that it would change my identity. How would others perceive me once they knew? I wanted to talk about the experience, but feared it would creep into every conversation if I opened up too much. I wanted my friends to know what was happening, but I didn’t want them to treat me differently.
That would have been an easier ask if the pain hadn’t considerably altered my lifestyle. Sitting in a car or a train for hours made things worse, so traveling became an unwelcome chore. I feared sex and began to avoid dating, the pleasures and perils of which formed a substantial aspect of my post-collegiate identity. For a month I stopped drinking alcohol and caffeine, thinking (almost praying) that my regular ingestion of those drugs was exacerbating or even causing my symptoms. They weren’t, but there was little pleasure in returning to them. Alcohol is a depressant and caffeine anxiety-inducing. At this point, after months of near-constant mystery pains, I needed no help inducing either emotion.
Numerous trips to specialists proved fruitless. Eventually an LGBT health clinic—which, years before, gave me the HPV vaccine when my regular doctor refused—diagnosed me with pelvic floor dysfunction. Giving my perpetual discomfort a name was nice, but the causes still seemed vague and full recovery unlikely. As I started in on physical therapy and medical treatments, the pain remained a constant, inescapable fact. Sometimes it even haunted my dreams, a malign shadow hovering at the edge of whatever other weird shit my psyche rustled up that night.
The question then became how to deal, how to continue. Avoiding others and dwelling on my fate didn’t feel too good. (Isolation makes everything worse.) I chose to be honest about it, telling my family and friends while monitoring myself to ensure I didn’t bring it up too much. It’s a relief, really, to not hide what’s happening. But I didn’t want to let the pain become all I talked about. I didn’t want to be the sick guy, even if it was always in the back of my mind. After a while, it’s not that hard to avoid talking about it. What more is there to say?
A friend once told me, after I explained the details and longevity of my symptoms, that he was impressed I was handling it so well. I’m a generally cheerful person in social settings, so I probably sounded better than I felt. But there also came, after months of this crap, a kind of acceptance. I was just going to have to live with it, because there really didn’t seem to be an alternative. Or there was a more terrible alternative. There was the possibility it would get worse, that the steady hum of pain would grow to be a cacophony. But best not to think about that.
MY SYMPTOMS HAVE MARKEDLY improved in the last year and a half. A physical therapy regimen, punctuated by periodic painful medical procedures, didn’t seem to work. Until they did. The pain hasn’t entirely dissipated (in fact, it just surged up again a few weeks ago), but it is not an ever-present fact of life anymore.
All that Camus I read in college didn’t prepare me for this experience, exactly, but it did help me interpret it. His novel The Plague is about facing the grim realities of an existentially meaningless existence in solidarity with other humans. In the novel, reality is allegorized as a deadly illness sweeping a quarantined city. Camus shows how the townspeople—among them a priest, a doctor, and a man who seals himself up in his home—try to live in this reality.
In the end, the plague recedes. But the doctor knows the survivors have not completely won.
Rieux remembered that such joy is always imperiled. He knew what those jubilant crowds did not know but could have learned from books: that the plague bacillus never dies or disappears for good; that it can lie dormant for years and years in furniture and linen-chests; that it bides its time in bedrooms, cellars, trunks, and bookshelves; and that perhaps the day would come when, for the bane and the enlightening of men, it would rouse up its rats again and send them forth to die in a happy city.
I try not to feel triumphant, or trick myself into thinking the ordeal is over. I fear my pain will return to its constancy. I fear that next time it will be worse. That next time I will not be able to afford the costs of medical and physical therapy without sacrificing retirement savings.
This ailment seems so random in its workings that I don’t know how to forestall its return. But it’s not worth dwelling on the possibility. The happy crowds know something too: Enjoy your reprieve while it lasts. It’s best not to think about all the other horrible things that might happen, until you have to.
