Cover photo by Polina Zimmerman on Pexels
This year marks a full decade since I first began experiencing symptoms of fibromyalgia that I could not justify with some other explanation. It would take another two years until I received a formal diagnosis and finally gained access to some kind of treatment that wasn’t just me throwing dangerous amounts of BC Powder at my pain. Nevertheless, it was ten years ago since I began grappling with my being chronically ill and mourning the life I thought I would have—happy thirtieth birthday to me, am I right?
I’ve written about Fibromyalgia Awareness Day before (here and here), so it might seem that I’m beating a dead horse and—believe me—I get it. I feel like I’m beating a dead horse. I feel like fibro is beating me like I am the dead horse. The thing is: evolution. My nervous system has evolved and found new and interesting ways of beating the dead horse (me). And I am angry about it. So, like Johanna Hedva said, I am writing again about my experiences with fibromyalgia “as a way to survive in [another new] reality that I find unbearable, and as a way to bear witness to a self that does not feel like it can possibly be ‘mine.’”
I took a break from writing this to go donate platelets. While sitting there, hooked up to the apheresis machine, I finished watching the second season of Russian Doll and, having spent days ruminating on the topic of fibromyalgia and disability and how I wanted to talk about them here, one particular line jumped out at me: “trauma is a topographical map written on the child, and it takes a lifetime to read.” Fibromyalgia, a neurological disorder that is so often triggered my trauma and stress, is one of the ways that topographical map is written.
Fibromyalgia seems to have some kind of genetic component since it seems to cluster in families. So, thanks to my stellar genetics, I was already predisposed to have fibromyalgia “come to me.” Living in constant emergency mode my whole life—family crisis after family crisis, an abusive stepparent, poverty, being bullied and threatened with sexual violence because of my sexuality, defending my queer family to adults all around me, abusive roommate and romantic partner situations—pretty much guaranteed it. It finally manifested in a way that I could not ignore during a time of acute stress: I was in graduate school and trying to write my thesis with an incredibly unhelpful and unencouraging advisor; I was working full-time in a café under two different sets of exploitative owners; I was trying to maintain a relationship with a new and, as it turns out, abusive partner—I was running on approximately 3 hours of sleep a night and putting my mind and heart and body through hell. By the time I had left my graduate program, left that job, and split from that partner, the damage was done: my mind and my body were broken. Or, at least, they felt broken.
Here I am, ten years later, in individual and group therapy, being treated in a pain management clinic, starting a new round of physical therapy, seeing a gastroenterologist, and holding a referral to a neurologist. I am currently coming out of another period of crisis: last year, I provided end-of-life care for my mother, who died, way too young, this past October. Taking care of Mom toward the end often meant that I was not able to take care of myself—I simply did not have the energy for it. I’ve spent the months since dealing with more intense, more frequent, more debilitating fibro flares and I can’t tell how much of it is the grief my body has internalized and how much of it is because I went so long being unable to give my body adequate care and rest.
I have tried two new pain medications since, one of which sent me into a weeklong migraine when I came off of it. My psychiatric provider and I are trying to figure out how to treat my treatment-resistant depression—which just feels like trying to nail jello to a tree. I’m being sent to physical therapy because I cannot stand for more than fifteen to twenty minutes before my back is in excruciating pain. I’m teetering so close to the edge of body dysmorphia that I’ve literally hung up a curtain in front of my bathroom mirror so that I am less likely to self-harm by picking and scratching at myself. To backtrack to Johanna Hedva: THIS is my unbearable reality. This is the body that does not feel like it is my own. My experience of fibromyalgia has evolved. As must the way in which I bear witness to this self that I am trying to accept as my own.
GIF from the animated series, Rick and Morty. A blue humanoid—Mr. Meeseeks—spreads his arms above his head and, between his hands, the words “Existence is pain” appears.
My therapist keeps telling me that it is a healthy sign when I am finally able to access and feel anger, rather than burying it under heaps of guilt. She says that feeling the anger means that I’m finally processing the fact that something happened that was immensely unfair; that something happened to me that was out of my control and it’s not fair. And, yeah, these are things I know, intellectually, but knowing them experientially? That’s a whole ‘nother ballgame. Now, these conversations are had in the context of my trauma therapy but I feel it is equally relevant here. After a decade, I am finally walking out of the intellectual knowing and into the experientially feeling: I’m angry.
And that anger is not just because I’m sick. Yeah, that part sucks. A lot. I’m furious about the traumas written onto my body. I feel a burning rage—absolute indignation—because the world is, at best, neglectful of and, at worst, outright hostile to me because I am sick; because the world refuses to acknowledge and accommodate disability. I can, at best, hold down a part-time job: it’s difficult to find employers willing to be flexible and accommodating of my fibromyalgia, my migraines, and my sometimes-debilitating anxiety disorders. I’m angry about and grieving the fact that I cannot participate in the world, not just in the ways that I used to but in the ways that I want to now. I am limited in my ability to be the friend I want to be, the political agent I aspire to be, the “productive member of society” that I am supposed to be. How on earth—when there are so many days when simply taking a shower drains me to the point of needing a nap—am I supposed to budget my limited and variable energy reserves so that I can take care of my mental and physical health; maintain healthy friendships; hold down consistent employment; pursue my political activism; create art; maintain my living space; and do…whatever else I’m supposed to be doing?
GIF from the animated show Star Trek: Lower Decks. An exhausted, young, Black officer—Beckett Mariner—plops forward on to her bed only to roll off the bed, across the room, and through the door to respond to another call.
So far, the only answer to that question I’ve managed to cobble together at this point is: I don’t. There’s no Konami code or Rosebud cheat to unlock more energy. I have to pick and, these days, I seem to be limited to picking two; maybe three, if I’m having a particularly good streak. Right now, in the wake of Mom’s death, it seems that attempting to take care of my mental and physical health is, in itself, a near total drain on my energy resources. And I’m angry about and grieving the fact that I have so little left over to be …me. Sometimes, I deliberately push myself—knowing full well just how dearly I will pay for it—simply because things have to get done. And sometimes, I deliberately push myself because I need to be more. I need to be more than my mountains of prescription medications and time marked by which appointment I have when. I need to be more than my pain; more than my fatigue. I need to be more than a poorly-wired sack of meat and bones. I am angry that I spend so much time feeling like little more than a perpetually exhausted, pain-wracked, poorly-wired sack of meat and bones.
The top of the image contains the caption “me thinking about tomorrow after pushing myself too hard on a ‘good body day.’” Below is a screen grab from The Simpsons, in which the school-aged character, Ralph Wiggum, is sitting at the back of a school bus. The screen grab contains the caption, “[chuckles] I’m in danger.
This Fibromyalgia Awareness Day, I’m just plain angry. That’s a good thing. (I think.) I have to acknowledge and feel my anger before I can start accepting where I am now.