Werewolf lore tells us that folks anticipating the moon know to keep their rampage from affecting people, and in extreme cases, keep anyone from seeing that they turn into a frothing wolf-beast. It’s hard to slink back to your day job when your colleague knows you maul livestock to sate your bloodlust every month.
A bit like how a werewolf is beholden to the rhythm of the moon, I live and die by my calendar.
It’s perfectly invisible the rest of the time, unless you know my good gait over bad, one micro-expression over another. My potential rampages occur within set, recurring time frames, when I don’t feel downright feral from pain and have the mobility to climb stairs.
IC is notorious for stomping on your quality of life through lifestyle, mobility, and functional restrictions. I cleared the bar of clinically talking about pelvises some time ago. Now I put my head down and drive at increasing my capacity to function. I use whatever cocktail of tools that cumulatively resemble a plan of care that let me live with agency.
Botox gives me the ability to string together enough healthy days to work (IC can inhibit work productivity) and be a partner, a daughter, a friend.
The pain was monstrous before I tried Botox
Before all that, though, I was just a freshly turned werewolf coping with an unbidden transformation, jolting from one flare of pain to the next. When I initially got sick, I hadn’t yet learned that a pelvic floor existed, much less that pelvic floor therapy could make a difference.
I’d been seeing urologists for 2 years in my hometown, and not once was the idea of pelvic floor complications proposed (although the incredibly invasive treatment,
“[The stigma around pelvic health] comes from a place of undereducation,” Anna Burns, PT, DPT, tells me. She treats patients — including me — with pelvic floor disorders (a population largely of women, although it includes men as well), focusing holistically on their own function, goals, and pain response.
“Nobody knows about [the pelvic floor] until they go wrong,” Burns says. While I give Burns credit for the ownership, agency, and genuine practical tools I have for adapting to living beyond this howling thing inside me, physical therapy wasn’t enough by itself.
What did help was the sterile needle injection of nearly the maximum units of Botox one can safely get for my pelvic floor. And, alternately, every 6 months, the same directly into my bladder muscle. Without Botox, I’m as societally useful as a werewolf. It’s a silver bullet that holds a silver lining for me.
Botox is often joked about and criticized as complicit in the perpetuation of damaging, unrealistic beauty standards. It’s an open secret for everyone, usually construed with vanity before the plethora of therapeutic applications it has. For me, getting Botox is the difference between achievement or gathering dust.
Now, with good planning and a well-packed purse, I can go from wearing my comforter around the apartment when I need my werewolf-suppressant injections the most to fully functioning, dates and dancing when Botox’s efficacy is at its peak.
I’m not exactly cured by the procedure, which requires a nerve block or full-on anesthesia, a total of four times a year. And when my previous injections wear off, I’m ready to rip off my clothes and transform, fangs gnashing as viciously as if I’ve caught my leg in a trap. This little werewolf would really prefer to be as invisible as my disability.
“The goal of treatment is blending [in], but there’s a huge stigma around discussion [of the pelvic floor],” Burns tells me.
I assume this is exactly how someone guarding their youth with aesthetic Botox might feel: pressured to blend in and remain visible in a particular type of way.
I just want to experience one’s supposedly vigorous and joyful 20s as a human.
After awareness, empathy is crucial in debilitating pain disorders
Burns’ work honors a simple truth: “In the end, people just want to be functional, want to go about their lives, and just be themselves.” She notes the U.S. healthcare system as it exists now isn’t structured to this intervention style of acknowledging the intrinsic nature of the mental and physical.
“You’re in their [primary care or specialist office] for 10, 15 minutes tops, so they can’t talk about empowerment,” Burns says, referring to not just pelvic literacy, but the challenge of openly using somehow fraught words like “vagina” or giving voice to intercourse-induced pain.
She has hope for burgeoning online communities where people can find others with their condition(s), such as PatientsLikeMe, or any number of disorder-affiliated networks. Burns even references one group of patients in her practice who coordinated their own in-person vulvodynia support group.
I’ve also started to radically accept that some days are pre-sacrificed to sedating antispasmodics and pain meds because a pain flare woke me before dawn. Some days I can’t disguise my true form and it’s better to remain unseen, free of explaining why I can’t take the stairs today.
If I didn’t shrug off all the complicated nuance (judgment, pity, impatience) involved every time I disclose my condition, I’d spend most of my life justifying myself instead of enjoying well-timed dancing excursions when I can. As evident in my lack of a pseudonym here, I’ve stopped apologizing or justifying.
Maybe the future of pelvic medicine will have to come after arduous, halting social change, when women’s health stops being conceptualized as a special bonus. I hope we can start with language that gives people the space to be as visible or as invisible as they wish, and makes the coming of the moon (however it comes for you) at least seem less ominous.
After all, after a few moons, you’ll get tired of laying out loose-fitting clothes at the edge of the forest all the time, and just start strolling past your neighbors naked.
Chaya Rusk is a reluctant bladder owner residing in Cambridge with her partner and their one-eyed, polydactyl cat. Catch her ordering just one more small plate and cooking with prodigious amounts of garlic when she’s not writing about public health and chronic illness.