If I'm being completely honest, I can’t remember a life without pain. And, yes, I’m saying that as someone who is prone to histrionics over the most inconsequential of things—like a fountain soda machine with a poor syrup-to-carbonation ratio—and coating how I move through this world with a generous helping of humor, only I'm not being dramatic or even facetious when I say this. Pain has followed me like a shadow, lurking even in the absence of a light source.
I have this joke that I like to tell: “I’m thirty, but somehow I’ve had a tension headache for seventy-eight years already.” Like many jokes, there’s an underlay of solemnity to it. When I wasn’t in school, I was sitting in an MRI machine, or getting an X-ray, or seeing a new specialist, constantly trying to figure out the cause of my almost-daily headaches. I'd started getting them when I was around ten years old, and they’ve remained chronic to this day.
I’ve had twenty years to get used to them. Sometimes I’m able to go about my day seemingly uninterrupted, sometimes I never make it out of bed. It has been this way for as long as I can remember. But the pain has always been relegated to my head, never lower than my neck. Sure, I might pull a muscle here and there—I’m meek! I threw my back out repotting a plant once!—but it’s always something easily remedied by some Advil, Icy-Hot, and copious amounts of bed-rest.
It wasn’t until recently that I clocked a different type of pain, one that made me ask, “Has that always been there?” You may think, “How do you not know if you've felt pain?” but when you’ve been in pain for as long as I have, the rest of your body just makes room for it without asking questions—it doesn’t know any better. It hasn’t known anything else. It makes room until it can’t anymore, which is the point I arrived at about a year ago.
I have been in full-body pain almost every day for about four years now.
Whether or not I have pain day-to-day isn't in question, it’s more of a matter of how much. Some days it’s relatively manageable—a dull local ache, maybe it’s the right side of my face, or my arms, or my legs. Some days it’s global—I feel like I’m being squeezed by the jaws of life. Sometimes I wake up in the middle of the night because my legs spasm. My brain fog frequently pulls the rug out from underneath my feet, rendering me unproductive or even more socially inept than I am to begin with, oftentimes forgetting what I’m saying mid-sentence or even forgetting things both big and small altogether. The fatigue is brutal, immune to a good night’s rest or even the strongest of cold brews.
These are all elements that have co-existed within me for some time now, the genesis of which I can trace back to around 2017. And even though I can pinpoint a time when I started to feel this way, it still feels like I’ve lived with this pain forever. I've completely forgotten what it was like not waking up in pain, or what it's like to lie down and do a a full body scan without getting, like, four different alerts shot back from various neuroreceptors.
A series of traumas from 2014 to 2017—surviving a toxic relationship that had turned my life upside down, getting trapped inside a burning apartment building, my dad being diagnosed with cancer then suffering a heart attack, all sprinkled with little traumas in between like chocolate shavings on a cupcake—that, while I talked about them freely in therapy, were never fully processed, having been sequestered to the forty-five minutes I’d designated solely for dealing with them each week, and the emotional strain was beginning to manifest physically in me.
Life was moving fast: I got accepted into a graduate program at The New School in 2014; I moved into my first apartment in East Harlem; I started my first internship with CREEM Magazine. I moved to doing phone therapy with my therapist in New Jersey since she knew all the details of my aforementioned relationship. A year later, that same apartment building would go up in flames, leaving my roommate and me unable to escape because of the dense proliferation of smoke in the hallway. There would be no way for us to make it down five flights of stairs without being exposed to severe smoke inhalation—or worse. And when we'd climb out of my roommate’s window to use the fire escape, the drop ladder would not budge. Two other neighbors joined our efforts to pry the ladder from its stubborn grasp to no avail. Jumping risked serious injury. Thankfully, the fire fighters came and tamed the flames before it was too late. I was officially diagnosed with post-traumatic stress disorder (PTSD) shortly thereafter. My dad was diagnosed with cancer a few months later. A year later, I moved to Brooklyn on the precipice of graduation, and shot my first feature film that I had co-written with my writing partner. My dad had a heart attack on the night of our premiere.
Despite it all, my career was growing. I had to keep going; I had no time to break. I was pitching my first book to agents. I was taking gigs left and right, trying to accumulate as many by-lines as possible because I knew selling a non-fiction project hinged on a successful platform. This cumulative trauma, largely unchecked outside of talk therapy, crept up on me. So focused was I on my hamster wheel, going and going, that my body finally just shut down last year along with the rest of the world.
I got a new therapist, whom I started seeing in February of 2020, right before the lockdown. My mental health had been rapidly declining for some time as a result of ongoing familial issues back home. I did not have the capacity to fully deal with this new set of problems—all of which were putting me under tremendous stress—because I'd never fully processed what I’d already gone through. I'd simply amassed prominent clutter in a mind that did not have room for any new additions. I had ran out of space.
My intention for starting therapy again was to organize the chaos and find places for it on the shelves of my mind, in order to create a space where I was able to deal with my current problems—many of which I am withholding details on for the sake of my family’s privacy—but my conversations with my therapist kept going back to my physical health, specifically the pain that I’d become more attuned to as it had started to worsen.
A few months later, in full lockdown-mode and complete social isolation, I was forced to really slow down and examine things, like millions of people around the world. With the help of my therapist, I realized that I'd been forcing myself to hustle on despite the pain I was in. Being home all the time meant that I couldn’t escape my pain; I had no outlet for my denial. I couldn’t go to a bar. I couldn’t meet up with friends. I couldn’t travel and take meetings like I had done only a few months prior to that when I had gone to LA to try to charm managers and producers. I couldn’t grab a coffee or have dinner with someone in whom I could confide. There was no distraction. The pain was just there, stark and fully present.
My therapist (and my new psychiatrist, whom I started seeing to help regulate all the brain meds I'd been prescribed) both suggested I talk to my doctor about it. The thing is, I already had. I had been told, like so many folks living with chronic pain and illness, to eat right and exercise—and had I tried StReTcHiNg????????????? I’d gotten countless X-rays and had done a million tests, all of which noted nothing of concern, thus was pointed in no particular direction on my quest toward naming the nebulous of the pain I’d been in for years.
I gave up on trying to talk to doctors.
A few of my friends who also live with chronic pain and illness recommended that I reach out to NYU Langone, as they’d each had success with treatment there. I made an appointment with a pain management doctor who sat down and actually listened—she believed me, which already lifted a tremendous weight off my shoulders. She validated me and reassured me that the pain wasn’t in my head.
She performed a physical examination, which included exerting pressure onto what are called "tender points," oftentimes—though not always—a hallmark of fibromyalgia. And tender they were, my good bitch! While she suspected fibromyalgia, she referred me to a rheumatologist to rule out any rheumatological issues, as well as a new primary care doctor, both of whom agreed that it was fibromyalgia pending the results of yet another MRI, some more X-rays, and a shit ton of bloodwork.
After everything came back normal (meaning whatever they were testing for was not detected)—it wasn’t lupus or Lyme or a vitamin deficiency, or any of the other countless things they had tested me for—I was formally diagnosed with fibromyalgia, which can only be diagnosed after excluding all other possibilities (there is no specific test for it, ergo the term “diagnosis of exclusion").
It was a relief to finally have a name for something, accompanied by a care team that I trusted, including a therapist and psychiatrist, all of whom were tailoring my care regimen to my specific needs. But it was also jarring to finally meet the specter that has been following me for all those years, whose face I could never make out because every time I turned my head, it had ducked behind another corner. Now, face-to-face with it, I could not escape it, and it could not escape me. It was a part of me. Like it or not, my only option was to remind myself that I was not my pain—at least not all of me. Accepting its role in my life is an everyday practice.
It’s a lot to accept.
I’m unable to perform at the capacity I had once performed. In some ways, I don’t think I have ever operated unburdened by chronic pain and illness, but it still feels like what once was is no more. The care I give, how I choose to express my love through my actions, is now mitigated by chronic illness. The meals I prepare for those I love might end up as Seamless delivery because I’m in so much pain that I need to soak in an ice bath to shock and reboot my nervous system, all so that I can find some modicum of relief. I lose out on opportunities because I’m unable to leave my bed, sometimes for days. I am trying to forgive—and accept—all of this. Like I said, it's a lot to accept.
I am still learning about radical acceptance—a skill taught in dialectical behavioral therapy (DBT)—and how to apply it to a life lived with chronic pain and illness. I’m not there yet, but I am open to it. I remain in therapy and do the homework that comes with it because chronic pain is indivisible from mental health. My pain makes me depressed; my depression begets my pain. If my PTSD flares up, or if I’m going through a really bad bout of anxiety, my entire body shuts down and my brain fires off pain signals even when there is nothing physically wrong with me (which is how fibromyalgia operates). It is essentially a misfiring of signals, but that doesn’t mean the pain is any less real than any other type of pain. Some days are better than others, but at least I’m trying. And right now, that’s enough. Some days, if I can brush my teeth and change into a clean pair of pajamas, that’s enough. And I’m learning to be okay with all of these things being enough.
I’m in head-to-toe pain as I type this. I’m not publishing this essay because I want you to know that if you see me at a bar, my face probably hurts. I’m publishing this to remind myself that, just a few days ago, I was okay. I traveled to multiple cities in multiple days! I went to a literary conference. I read from my book in front of over a hundred people and killed it. I was able to go out afterward for dinner. I was able to drive over two hours the next day and still go furniture shopping for my new apartment, even after reaching my destination—these two things happened in one day! I didn’t need to lie in the dark for seven hours! The next day, I sat in the sun, ate strawberries, and took a saucy selfie. I was in minimal pain—barely any, in fact—but I still managed to find some pockets of joy. On days when I’m in whole-body pain—like today—just knowing those nuggets of joy (and actual nuggets), are not only possible, but inevitable like a daffodil blooming in the spring, is sometimes enough to keep me going.