Content Warning: Light Suicidal Ideation Near the End
Of all the types of chronic pain the human body can experience, facial pain is the most demoralizing. I don’t mean to play the Chronic Illness Olympics, but I’ve got the inside scoop on why it sucks major ass. To me, facial pain is the kind of pain that affects my sense of self the most. Here, take a small bite into what it’s like:
“Hey, how are you, let’s go out for lunch.”
—pain—
Fuck, I must have slept wrong.
—pain—
“I’ve just been really stressed lately. I don’t know what to do about it.”
—pain—
What if this sends me back into a flare-up?
—pain—
“Sorry, no I can’t have any popcorn.”
—pain—
I try to explain this mental load to my partner using a pie analogy. Think of your total mental energy as a fruit pie. Cherry, rhubarb, peach, take your pick. Mine’s blueberry. We all have a pie, but we only get one pie per day. We all have to divide that pie up between work, chores, eating, hobbies, and pleasure. Sometimes when you have a double shift, the “work” slice is enormous; sometimes the work slice is nonexistent. Some days are more balanced. Some days, like Thanksgiving, the whole damn pie is for “eating.” But once that pie is gone, that’s it. Time to turn in for the day.
However, every single day, my chronic illness takes at least one slice of my mental pie. Sometimes that slice is a modest eighth of the pie. Sometimes it’s just a tiny sliver. But there are days that my chronic illness takes the whole pie and devours it like a wild animal, throws the remains at the wall, smearing the blueberry blood and shattering the pie plate and cutting my face with the shards. There is never a day that zero percent of my mental and physical energy is used on my chronic illness.
That might be the worst part. Thinking about how I feel, assessing what I can and can’t do that day, remembering to take my meds, do my stretches, and use my TENS unit. Worrying about if I’ll be able to eat the food that my friend’s having at her party, worrying about every little joint crackle and muscle spasm, worrying about those bills in the mail that I keep ignoring and will keep ignoring.
The even worse worst part is that jaw pain—you can’t exactly give it a rest unless you want to go up to your neighborhood oral and maxillofacial surgeon and be like, “Hey, can you just, like, wire my jaw shut for a week? Thanks.”
The mandible isn’t like a finger. You can’t splint it. It’s not like the kidneys; you can’t just remove one. The jaw is always underestimated until it gives out like a weak link. I certainly didn’t realize how much of my life was jaw-centered—drinking, eating, speaking, kissing, smiling, even breathing—until the joints were trying to self-destruct inside my skull. But it’s not a competition. Pain is pain is—
—pain—
#
Temporomandibular joint disorder (TMD) is a chronic condition characterized by the dysfunction of the two joints on either side of the face, the hinges that allow our jaws to open, close, and move back and forth. Chronic muscle and joint pain, discomfort, joint clicking, joint locking/subluxation, headaches, neck pain, tinnitus, eye floaters, osteoarthritis, tooth cracking and gum recession—all symptoms I’ve dealt with on a daily basis since 2021. But for me, this condition is so inherently emotional. The baggage of physical pain always drags along with it mental health problems like anxiety, depression, and hopelessness. Plenty of people deal with mild jaw pain, but I have a severe, chronic case, one that requires several specialists, thousands of dollars, and years of treatment.
That was, of course, after I finally got a doctor to listen to me. For about a year, I saw a general dentist to try and help with my TMD, but he gave me night guard after night guard—none of which helped. For almost a year, I tried to get him to really listen to me, but most of my interactions would be with the dental assistant. The doctor would pop in for thirty seconds max, make a few comments, then run out. Soon, it became clear that he didn’t know what he was doing and that my problems were far outside his wheelhouse.
So I sought my own answers. When I called a TMD clinic in my city, the woman on the phone asked who referred me to their office.
“I did,” I said. I referred myself, because like hell if anyone else was going to do it. I took my health into my own hands, begging and clawing on my hands and knees until someone really sat down and listened to me. And I owe my life to the doctor who finally did.
#
While I am still on a medical journey of trying to correct a very concrete wrong in my body, I worry about when the illness finally does become completely visible in the form of orthodontics. That little—pain—voice will certainly turn into the blaring alarm of
SHAME!
SHAME!
SHAME!
An adult with braces? What a fucking joke! Shame, shame, SHAME on you. This must be your fault. You must have done something to cause this. What was it? Was it all those years of being an anxious teenager and biting your nails? Was it years of anguished crying, only able to speak from between clenched teeth as they turned into fangs? Was it years of being silent, so silent before a man-made god that I didn’t know I was silencing myself? Was it years of others silencing me until all I could do was bite down on the wooden stake and smile through the pain? Either way, it’s your fault. Your fault for sure. You’ve fucked this up, and now you’re paying the price in pain and doctor bills and humiliation. You know you deserve this pain, this hell-on-earth. That’s what they told you every Sunday in church and every Wednesday night and within the four walls of your own goddamn house. Shame, shame, shame.
#
That is the inside of my mind, 24/7, give or take. But I have no other choice: go through this treatment or be in excruciating pain until I get suicidal again. But I don’t really want to die. I don’t want to feel this way. I can’t feel this way, because I know life can be better. I still have books to write, love to make, and more pies to bake.
Chronic pain drives people to desperation. I am desperate, but I never want to be that desperate again. I spent so long being quiet in my desperation. I would like permission to be loud in it. I spent so long hurting myself, tying my tissue into knots and beating my bones until they grew spurs. That is not a life worth living.
And I know life is worth living. That’s why I’m writing this. But for now, I can be a mess on the page. For now, I can be in pain. I can push forward with treatment, in the hopes of a lifetime of less pain and less plastic and metal in my mouth. I know I will have flare-ups. I have come to accept this. But a few weeks ago, I scheduled the appointment. I did the big-girl thing and stopped avoiding the doctor who can help me progress, not just stay stagnant in a state of remission and half-pain. I am wearing a crutch, and I am tired of it. I want to heal again.
For so long, my facial pain has tried to change me. It has tried to silence me and rip me apart at the seams. It has tried to break me, and many times, it has. It has tried so hard to shatter my self-worth and sense of being. Maybe it has.
But I cannot let it stay that way. I can only clean the blueberry filling off the walls, sweep up the broken pieces of the pie pan, and keep baking.
Olivia J. Bennett (she/they) is an author, freelance editor, and art teacher. Her work has recently appeared in Euphemism, Outrageous Fortune, and The Wandering Angel. When not creating, Olivia can be found baking cookies, watching Naruto or Lost with her partner, or cuddling her two cats. She lives in Illinois.
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