u/Ok-Calligrapher2643

Our cognitive resources are limited, and pain is the ultimate resource hogger. It competes for our brain’s attention. In fact, if attention-seeking was an Olympic sport, pain would bag the gold medal every time, followed closely by people who claim matcha tastes good.

If you've ever felt like your chronic pain has made you a “worse person”, this one's for you.

Here’s the thing. Since developing chronic pain, I’ve found that I’ve become a worse person.

Less patient.

More self-absorbed.

More detached.

I often catch myself zoning out in conversation because frankly, most of my mind’s real-estate is permanently tenanted by repetitive thoughts about my own state of affairs:

How bad is the pain right now?

Where does it sit on a scale of “ Huh… maybe I won’t need the backup pill today” to “Shoot me … shoot me in the head right now”?

How long ago was the last flare-up and how bad was it? What fresh hell may the next one bring this time around?

When is my next doctor appointment due? Have I scheduled it yet? Am I going to mention the flare-ups or are we doing the redacted “all good in the hood” version per usual?

Wait a minute … Did I take my morning meds?

Wait another damn minute … I think I’m running out of pill supply. How much longer do I have?

Yatta yatta yatta

It’s constant noise up there.

A rolodex of questions, calculations (and miscalculations) of recent events, attempts to forecast my entire future based on the current state of things, or straight-up agony from pain present in the moment.

And if I’m not thinking all that, I’m probably thinking “Jeez … I wish whatever they’re on about was my biggest problem…”

Which, let’s be real, is not a very charitable thought, even if kept to one’s self.

So I often find myself overcome with guilt. And fear.

Fear that my condition, apart from eviscerating any realistic hope for me to have a half-decent QoL, has also turned me into

an absolute twat

Into someone I don’t particularly like.

Have I permanently lost the ability to lock into a conversation about someone’s sick pet, dying mom, delayed promotion, failed business, love life, or money problems- all of which no less valid or real than my own experience?

Here’s the thing I didn’t know until recently.

There’s a cognitive bill to prolonged periods of suffering. And a hefty one at that

Studies have shown that people sustaining pain for long periods of time exhibit signs of impairment across a number of cognitive functions.

One recent study that induced sustained pain on a set of healthy participants and measured their brain activity revealed two distinct “alarms” misbehaving in their brains- which I will attempt to outline hereafter in layman-ish terms.

Let’s get into it. I’m going to need you to lock in for the next 2 minutes.

The first mischievous alarm is the “expectancy violation” alarm. We all have it. Think of it as a “status quo violation” alarm that goes off when we encounter setups that don’t align with our expectations - “mismatches”, if you will. A mismatch could be the convenience store down the block being shut on a Monday despite having been open every Monday for the past 10 years. Or walking into the printer room and finding a fridge instead of a printer. Or more interestingly, spotting a panda with wings (cute!).

The experiment found that this alarm is more feisty for “pain-impaired” people - as in firing up more aggressively. A pain-preoccupied brain detects more “mismatches” than a normal one.

Great, but what does that practically mean?

The practical implication of this actually reveals something deep: A pain-preoccupied brain latches onto “pain” and “suffering”-related information, and struggles to pull away from it. When something forces its attention elsewhere, the yanking-away registers a jarring mismatch.

In other words, for people with chronic pain:

Pain becomes a natural bias of the mind. A perpetual afterthought. An ever-present expectation

That is a chilling thought to wrap one’s head around.

Now, the second misbehaving alarm is the “executive emergency” alarm (fancy right?). Again, we all have it. This is the alarm that goes off when you need to redirect your focus – as fast as possible- from a task you’re actively engaged in towards something else that is suddenly demanding your immediate attention.

Picture this.

You’re knee-deep into finally cracking the perfect ending for a novel that’s been 5 years in the making and will potentially launch your career as the most revered writer of the century. Suddenly, you hear the much dreaded evermore dramatic cry of your toddler who seems to have tripped over his own shadow- again. Cue the executive emergency alarm. How fast can you drop your quillpen and sprint towards your crying toddler.

Can’t relate? Me neither. Picture this instead.

You’re driving down a residential street at 40 mph. Your foot is on the gas pedal, meaning your brain is already in “Keep. Car. Moving” mode. Suddenly, a red ball emerges seemingly out of nowhere and into your path, which, in all probability, means a kid may very well be sprinting after it.

In a healthy, free-spirited, unburdened brain, your attention snaps towards the ball instantly. Foot off the gas onto the brakes in milliseconds. Ball squishing successfully avoided.

In a pain-preoccupied brain, this snap comes slower. Your mind lingers in gas-pedal mode for a split second longer, forcing your executive alarm to shriek harder and louder “HIT THE BRAKES YOU SLUGGISH BASTARD!”

Not because you didn’t see the ball, or because you didn’t know you had to stop. But because you didn’t have as much “executive bandwidth” to begin with. Redirecting your focus costs you more effort and still takes longer. In other words:

Chronic pain keeps your brain stuck in first gear

It makes it harder for you to turn your attention towards an emergency. Because guess what … red ball / crying baby, you’re not the only emergency in the room, there’s another contender out there, a vociferous one too.

One that is not content to sit quietly in the margins - it wants center stage, and demands constant tending to.

One that has the power to fuck up your systems and jam your alarms by pulling off one of the most sophisticated, most expensive heists of all time (forget the Antwerp Diamond Heist)

The Brain Heist

Our cognitive resources are limited, and pain is the ultimate resource hogger. It competes for our brain’s attention. In fact, if attention-seeking was an Olympic sport, pain would bag the gold medal every time, followed closely by people who claim matcha tastes good.

Chronic pain, in particular, turns the better part of your brain into a full-time surveillance department. You’re not choosing to not be present in the moment, your nervous system keeps dragging your attention back there.

This is exactly what our brains have evolved to do over millions of years, detecting threats and keeping us alive.

Unfortunately, it can’t always tell the difference between a threat that requires immediate action and one that has become a permanent resident.

So it keeps checking.

Is it still there?

How bad is it now?

Has it spread?

Has something changed?

Over. And over. And over.

So what’s the moral here? Simple:

Give yourself grace

Give yourself grace if your pain has made you more “self-centered”.

Give yourself grace if your pain has made you a more irritable, less patient person.

Give yourself grace if the pain has forced you to slow down, squish a red ball, take a second longer to attend to your crying toddler, cancel plans, cut people off, or drift-off mid-conversation.

Pain consumes more mental bandwidth than you’d like. That’s not evidence of weakness, nor is it evidence of moral failure.

Trying to keep focused with a “chronic pain brain” is like attempting to read a book while someone keeps calling out your name in the background. Nearly impossible.

And whatever narrow slither of brain resources the pain has spared you … only you can decide what do with it. So do it selfishly, do it with conviction, and do it without letting anyone (including yourself) give you grief about it.

I've had atypical TN for the past 5 years that mostly manifests as constant aching/burning toothpain.

Recently I started feeling a different kind of toothpain than usual and just powered through it for weeks thinking it's my TN manifesting as a new type of pain (which has happened throughout the years)

Turns out there was an actual cavity in my molar and I was enduring additional pain that could have been avoided.

How do you navigate between the fear of missing something in your teeth and that of doing unnecessary work on your teeth?

There’s courage in giving up, caving in, admitting defeat

in waving the white flag, ceding the fort,

In walking away, dusting your heart, moving on

In admitting that you can patch up an old shoe over and over,

put paper over the cracks

or paint over the rust

But much like fighting a bad tooth with aspirin,

the rot will always find its way through

Sooner or later, it reeks

---

There’s courage in tearing up a near-finished piece of work

In tossing a poem, or an entire novel, in the bin and starting from scratch,

because you’d rather die with nothing to show for yourself,

than show anything short of craftsmanship

---

There’s courage in choosing not to fight

In sitting back and watching calamity tear your life apart,

strip you bare and grind you into dust powder

while you stew in the wreckage

In accepting that your misery isn’t all that special,

or in fact isn’t special at all

It doesn’t come bearing hidden purpose in its underbelly

And while your pain may be hideously vile,

It may very well be, in all its vileness,

utterly meaningless

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https://www.reddit.com/r/OCPoetry/s/n8qn6qLY6V

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https://www.reddit.com/r/OCPoetry/s/KZAjWCH5Jd

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If facial pain were a cigarette brand, it would have to come with a disclaimer in big bold writing:

“Although nothing may appear to be wrong on paper, I’m very real”

X-rays … nothing

MRIs … nothing

CBCT scans … nothing

Nerve conduction tests… nothing

Percussion tests … nothing

Cold tests … you guessed it, nill!

Everything is clean as a whistle, so why does it feel like you’re repeatedly being stabbed in the face all day long?

This is where six very dangerous words creep in:

MaYbE iT’s AlL iN mY hEaD

Well, yes. The pain is indeed being processed in your head.

In fact, every sensation or pain you’ve ever experienced - whether it’s a piercing, a bone fracture, stumping your toe or stepping on a piece of lego at 3am - is exclusively processed in the same place: your head (or in more scientific terms, your brain).

What makes facial pain especially excruciating through, and conditions like Trigeminal Neuralgia described as among the worst pains known to humanity, is the fact that your face is one of the most heavily wired pieces of real estate in your entire body.

Let me paint a picture for you in layman terms, as a certified layman myself whose credentials are owed to a disordanate amount of hours spent online reading about facial pain.

We all have 12 pairs of cranial nerves. Those are the nerves responsible for our five senses, as well as all sensations and movements in our head and neck region. One of them, which also happens to be the largest, is

the Trigeminal Nerve

(Pause for effect)

We each have two trigeminal nerves, one on each side of our face.

‘Tri” comes from the latin “Tres”, meaning three, because the nerve branches into three major divisions on each side:

an upper branch serving the eyes, forehead and upper nose

A middle branch serving the cheeks, upper lip and upper teeth

and a lower branch serving the lower lip, lower teeth and jaw

As for “geminal”, I have no clue what the etymology is, you’re going to have to google that one.

The trigeminal nerve is the command center of your face. Its job is to collect information - big or small- from the outside world and report it back to HQ (the brain). Think about all the things your face comes in contact with every second of every day:

The temperature of your food.

The texture of your food.

A grain of sand in your eye.

A strand of hair brushing your cheek.

A toothbrush bristle gliding across a tooth

A piece of broccoli that has no business being stuck in your teeth

The trigeminal nerve has an astonishing number of nerve fibers slaving day and night to record and collect stimuli, this is not your average data clerk. To put that into perspective, the “sixth thoracic nerve” - which serves the entire chest area (significantly bigger than the face) - is believed to have seven times less nerve fibers than the trigeminal nerve.

If Thomas Willis, the anatomist who discovered the trigeminal nerve back in 1664, was born in the 2000s, he probably would have called it

The Sensation Queen

The job of the Trigeminal Nerve is remarkably simple: Collect information from stimuli and surroundings, and transmit it to the brain for interpretation. The brain, the clever cookie that it is, then applies a sophisticated sorting mechanism that discards irrelevant signals (a pleasant kiss on the cheek from your loved one) and prioritizes those deemed as a threat (ranging from a needle to an axe through your face). The brain then passes on the relevant signals to your conscious awareness, and voila, you’ve got pain.

Most of the time, and for most people, this process goes beautifully: A cold drink touches a tooth. The nerve sends a signal. The brain interprets it as cold. End of. No threat detected. Everyone goes home happy.

But what happens when the communication system becomes damaged?

Well, the absence of fire does not make a faulty alarm any less loud

A smoke alarm’s purpose is to warn you about fire.

Now imagine the wiring goes faulty. At 3 a.m the alarm goes off. You walk frantically through the house, searching every room for the source of the fire, but to your surprise find no smoke, no fire, no danger. Nonetheless, the alarm is still very much shrieking, and there’s no way to turn it off.

Now imagine your alarm does this all day every day. And imagine it’s located inside your face.

Welcome to trigeminal neuropathic pain

With trigeminal neuropathic pain, although the pain is very much felt in the skin, teeth, gums, or jaw, the problem is not there. You can tear these open, dissect them, probe them, tap them, run all sorts of tests and scans on them, and still not find any pathology whatsoever.

This is because the problem lies in the signalling system itself. The nerve fibers are believed to misfire, to become hypersensitive, such that the slightest touch can send them wailing. Messages get distorted or amplified on their way to your brain, which is then left to fend for itself, trying to make sense of corrupted information.

But the brain is a very reasonable thing (It is the brain after all). It works with the information it receives.

If the incoming signal says “danger,” the brain interprets danger.

If the incoming signal says “pain,” the brain interprets pain.

The brain does not simply ignore a message because an MRI came out clear.

This is where the rift between the very real pain you’re experiencing and your physical and pathological reality emerges. Your consciousness does not perceive “misfiring fibers”, it does not perceive “signals being amplified on their way to the brain”, it perceives pain. Localized pain. Pain you can point to on a map of your face without hesitation. In your tooth. In your gums. In your jaw.

This is not psychological.

This is not imagination.

This is neuroscience

This phenonomenon is not exclusive to the trigeminal nerve. Corrupted nerve signalling is also a common occurence with limb amputation, whereby the brain keeps receiving pain signals from a limb that no longer exists- often referred to as “phantom limb pain”.

But because the face is so densely wired, and because the trigeminal system is so extensive, and because we use these nerves thousands of times every single day to eat, drink, speak, smile, yawn, kiss, brush our teeth, and generally exist, when that system becomes disrupted, the result is pain that is impossible to ignore, let alone live with.

In fact, stone carvings at Wells Cathedral dating back to the 12th century show individuals clutching their faces, pointing to their teeth and jaw. Medical historians widely believe them to be a depiction of trigeminal neuralgia, an unknown affliction at the time.

And you know what?

if there’s anything worse than having trigeminal neuralgia in the 21st century …

It’s having it in the 12th century!

Ever since I settled into my chronic pain condition (atypical facial pain), my brain seems to have developed a rigorous categorization system that constantly runs in the background, whereby people are automatically assigned one of two labels: fellow pain-bearers, or normies.

And while it is not at all my intention to insult the “normies”, I must admit I struggle to relate to them a lot of the time. And for a good while, not too long ago, I even bore a certain resentment towards them, a form of envy, a strong conviction that they owe me an explicit acknowledgment of their huge privilege (absurd, I know). While this was not exactly my proudest moment, I don’t believe this sentiment was completely baseless. After all, who among us, has not at some point in their life looked up to the face of God, when hit with calamity, and asked: Why me, of all people?

A pain qualifies as chronic when it lasts for longer than 3 months, extending beyond the typical healing time of an injury or illness. Pretty straightforward definition, right? The timeline for accepting it, however, is a completely different story. It is much more complex to measure, perhaps because the journey towards acceptance is not a linear one at all. Truth is, if you suffer from chronic pain, you will most likely spend the rest of your life in a perpetual state of adjustment, fighting and relinquishing, declaring war and waging peace. It certainly doesn’t help that the pain usually changes charactaer over time, and becomes resistant to methods that might have once brought you relief, or hope.

It sounds bad, I know, but it’s not all that grim. There’s a flip side to it, one that might not be very obvious, especially on days the pain is so merciless you want to carve your eyeballs off your face. As you begin to learn more and more about your pain- what triggers it, what puts it at bay, what makes it shoot through the roof- you are naturally forced to become a better friend to your body, and listen to it in ways you probably wouldn’t cared to do otherwise. You finally understand what it means to say ‘your body is a temple’, which needs to be looked after, respected, for its limits as much as its abilities. Otherwise, it will undoubtedly fail you, and when it does, the writing will be all over the wall.

Along with your body, two other sacred temples rise underneath your sun: Time and energy. For fairly obvious reasons.

Time can never be redeemed once it’s lost, this is true for everyone. For you it’s even more true, particularly when it comes to the rare moments of relief you are bestowed once every blue moon. A moment without pain is a moment you’ll want to live to its fullest potential- and certainly not waste with someone who annoys you or simply bores the hell out of you. As for energy, well, you’ll realize unfortunately that you’re unable to replenish it as easily as you once were. So your tolerance for anything or anyone which doesn’t tickle your passions, or excites your mind, becomes virtually inexistant.

And just like that, you become ruthless and uncompromising in choosing the people you surround yourself with, the books you read, the places you visit, the conversations you engage in, the smallest tasks and endeavors you embark on. And you know what happens when you stop trying to entertain stuff you never really gave a shit about? You become free, wonderfully so. You become your most unapologetically 0-fucks-given authentic self.

And that, my friend, might perhaps be the most underestimated power in this world.

Doctors encounter all kinds of patients on the daily, I imagine. From the hypochondriac who comes armed with a 47-slide PowerPoint presentation, a color-coded symptom tracker, and a comprehensive treatment plan, all the way to the person who always opens up with a cautious “it’s probably nothing but …” despite relentless life-threatening symptoms.

Lately I seem to be leaning more towards the latter pattern, for reasons I am yet to fully unpack with my therapist. Here’s a snippet of a recent coversation I had with a doctor for illustration purposes (I allowed myself a few embellishments here and there):

Doctor: “So … What brings you in today?”

Me: “I have persistent pain in my upper right molar area.”

What I meant to say: I haven’t known peace since March last year.

Doctor: “How severe is the pain?”

Me: “It’s bad but I guess it’s manageable.”

What I meant to say: I spend the good part of my day negotiating with demons in my head to stop myself from yanking my teeth off.

Doctor: “How often does it happen?”

Me: “Quite often, but hey … at least it doesn’t wake me up at night.”

What I meant to say: It has become the main plotline of my life.

I don’t know where this instinct comes from. People-pleasing tendencies definitely play a role here. We’re afraid of “inconveniencing” the doctor or wasting their time with trivial, unwarranted details, so we choose the path of least resistance. We don’t question them too much lest we make them uncomfortable or, heaven forbid, bruise their ego - which tends to be a fragile thing in the world of medicine. We sit there, nodding along to everything they say, whether we understand it, whether we agree with it, or whether we think it makes sense at all.

For those of us dealing with chronic conditions, there’s often another factor at play, which is the sustained scar tissue from encounter upon encounter with doctors telling us our symptoms are “only as bad as we make them out to be”, “mostly in our head”, and best addressed with the groundbreaking intervention known as JTNTSTM - “Just Try Not To Stress Too Much”.

But perhaps at its core, all it it boilds down to is fear.

Fear of being perceived as dramatic.

Fear of being perceived as weak. As lacking in resilience or ability to cope with experiences that everyone else may handle much better.

Fear of being met with the skeptical raising of the eyebrow, the stunned full body recoil, or the bewildered look of stupifaction that immediately makes us shrink into ourself and question our own experience.

The result is that I, like many of us, walk into appointments with a detailed perpetual internal monologue and end up with an aggessrively redacted, “TL;DR” external version.

Instead of saying:

This pain is ruining my quality of life. I can’t think straight. I’m consumed with thoughts and worries. I spend hours researching. I’m terrified something serious is being missed.

I say:

“It’s been pretty annoying.”

“Pretty annoying”. The phrase is doing Olympic-level heavy lifting here. My entire experience stripped down to a mere two unimpressive words.

The irony is that the people most worried about exaggerating are often the ones minimizing their experience. We’re basically negotiating against ourselves before the appointment has even started. What to ommit, what to dispense, how to dispense it. The doctor doesn’t need to downplay our symptoms, we’re already doing it for them.

So here’s a revolutionary concept I’m trying to embrace:

Don’t be afraid to be annoying at your next doctor’s appointment.

If something hurts, say it hurts.

if it hurts badly, say it hurts badly.

If it’s affecting your life, say it’s affecting your life.

If you have questions, ask them. In fact, always go prepared with a list of questions ahead of the appointment and force yourself to go through them.

It will be uncomfortable, but you will step out of that appointment feeling a whole lot better than if you had held back.

Doctors cannot diagnose the symptoms you’ve edited out of the story.

There is no award for Most Stoic Patient.

Nor is there anyone out there handing out medals for people saying they’re fine while visibly deteriorating.

Trust me.

I’ve checked.

Twice.