I'm slowly returning to work and to you. I promised more in-depth content recently, but the last week — marked by a multi-day migraine — took away my space for reading, analyzing, and organizing thoughts. So I ask for a little patience.
But I didn't want to leave you without anything. So I took a short break from other tasks and put down a few reflections that came to me after receiving a voice message from my trigeminal sister Joanna.
Asia suggested today's topic and in the process released anger and frustration — feelings I know intimately and that keep returning in the context of something I will write about many more times: the lack of empathy, the invisibility, and the social ignorance surrounding pain and painful trigeminal neuropathy.
She reminded me of stories from the lives of our "trigeminal" friends. And because I often wrestle with similar anger and helplessness, I decided to share this with you.
I also want to tell you about a small idea — an attempt to "break the spell" of our disease's invisibility. It won't be magic that produces instant results. More like persistent drops of water that might eventually hollow out rock.
But before I get to that, let me describe some small yet deeply significant situations from the lives of people living with pain.
"You don't look like you're suffering"
Our trigeminal friend Aga, during an appointment with a pain specialist, heard from his mouth:
"You're wearing makeup and nicely dressed. You don't look like you're suffering."
It's hard to describe how deeply such words can wound — how quickly they trigger a wave of negative emotions: from anger, through helplessness, to a profound sense of being misunderstood and let down. How can a physician, a specialist, reduce someone's suffering to their appearance?
This statement reveals one of the most problematic mechanisms in how society perceives illness:
The belief that suffering should be visible. That if someone "looks good," it means they "can't be suffering that much."
But the opposite is true. If pain always had a clear visual representation — if it left marks on the skin, deformed facial features, or made "normal" functioning impossible — invisible illnesses simply wouldn't exist as a category. They'd be obvious, noticeable, and therefore harder to deny.
As social beings, humans have developed a range of adaptive mechanisms that allow us to function despite suffering. One of them is the ability to regulate the expression of emotions and symptoms — consciously or unconsciously "masking" what might be perceived as weakness.
From an evolutionary perspective, this makes deep sense. In environments where survival depended on group belonging, capability, and the ability to act, excessive display of weakness could lead to marginalization, loss of status, and in extreme cases, exclusion — which meant death. The body learned to compensate: to maintain functionality, control pain expression, and "keep it together." In the modern world, these mechanisms haven't disappeared — only the context has changed.
We still try to look "okay" despite our pain. We still strive to maintain control over what we show the world. Makeup, a smile, good posture — these are not proof of absence of suffering. They are often tools for coping with it. Forms of adaptation that allow us to survive the day, go out among people, and not fall apart completely. That is why judging pain by appearance is not merely superficial — it is fundamentally wrong. It ignores both biological adaptive mechanisms and the psychological need for dignity, agency, and control. Suffering has no obligation to be visible in order to be real.
When friends disappear
The wife of a trigeminal friend who recently began dealing with painful trigeminal neuropathy said they lost half their social circle. People were angry at them for "not going out," "not meeting up," "disappearing from social life."
No one asked what was happening. No one tried to understand. Because you can't see it.
I've experienced many similar situations myself, and every time Mel Robbins' book title comes back to me: *Let Them.*
Illness redefines life — not only our body and daily routine, but everything around it, including relationships. And while dealing with pain is already hard enough, it often turns out that the people around us are going through their own "test."
Not everyone passes. And it's hard to be surprised in a world that still trusts what is visible and easy.
This is precisely the curse of invisible illnesses — conditions like fibromyalgia, depression, or trigeminal neuralgia and neuropathy. Diseases that have no bandage, cast, or visible wound. Diseases that unfold beneath the skin, in the nervous system, in a body that from the outside may look "normal." That's why they're so easy to ignore, dismiss, or simply not notice.
And perhaps this is exactly where it's worth truly understanding the meaning of those words — let them. Let go of the connections that couldn't withstand the test. The relationships that couldn't bear the truth about our lives when it stopped being comfortable, light, and "easy to accept."
If we're already dealing with something as demanding as pain, is it really worth additionally carrying the weight of relationships that don't support us?
It might sound idealistic, but so little is needed: a phone call, a message, a brief "how are you feeling?" It's truly a small effort, and it can mean so much.
You don't need to understand everything. You don't need ready answers. In such moments, empathy is enough — or simply ordinary, human interest in another person.
Photos don't tell the whole story
Joanna, who inspired me to write this, recently returned from a short trip. In the photos — smiles, sunshine, beautiful shots. But photos are only fractions of seconds. Moments we can "perform." A smile can be forced. Pain — hidden.
That's why alongside those joyful photographs, Asia also publishes others: from procedures, from specialist appointments, from days spent at home fighting pain in silence, in the company of her cats. She tells her story to friends so they can see her in a different light. Get to know the new Asia living with pain. And yet she still encounters misunderstanding.
"You have memory gaps from medications!? Maybe that's just your excuse?"
In such moments, the ground drops away for a second... pain itself affects our brain and cognitive processes, and the medications on top of that... Only someone with zero sensitivity could say something like that. Because you don't need to know everything, but it's worth sometimes simply being understanding. Because this pain isn't visible at first glance, the effects of this disease aren't visible — but they're there.
Work and judgment
Another frequent accusation concerns work.
Someone looks from the outside and thinks:
"She works part-time? Maybe she just doesn't want more. Maybe she's lazy."
But the truth is entirely different. Pain steals energy. Medications steal energy. The body is in constant battle.
This isn't a matter of choice or ambition. It's a matter of capacity.
We are not as functional as people who don't live with chronic pain. And that's not weakness — it's a reality we must face every day.
Making the invisible visible
The hardest part of all this is colliding with lack of understanding. Sometimes that hurts more than the pain itself. Because if we were missing a hand, if half our face were paralyzed, if suffering had a clear, visible shape — the world would respond differently. There would be more space, more empathy, more attentiveness.
But this way? The pain exists and wrecks life. Medications too. And at the same time — none of it shows.
And that's exactly what makes this invisibility hurt so much. That's why I want to do something small.
In a few months — October 7 — we observe International Trigeminal Neuralgia Awareness Day. It's a good moment to speak louder about what we face. But maybe we can do something more...
On that day, I want to draw a simplified diagram of the trigeminal nerve on my face — red, clear, visible.
I want to design a symbol that will be a sign of this disease.
I want to show the world something that isn't normally visible. Because our disease isn't invisible — it's UNNOTICED.
And it's high time to change that. I'll mention this idea many more times, so if anyone wants to join me that day to show the reality of our pain — come along. The more of us there are, the louder we'll be.
Natalia — since 2014 I've been living with trigeminal nerve pain. I write in plain language, based on reliable sources and personal experience. Read my story →
Frequently Asked Questions
What is trigeminal neuralgia?
Trigeminal neuralgia is a chronic facial pain condition. It manifests as sudden, severe, usually one-sided pain attacks — often described as an electric shock. A single attack typically lasts from a few seconds to about two minutes.
What is the difference between neuralgia and neuropathy?
In simple terms: neuralgia primarily involves paroxysmal pain along a nerve, usually without loss of sensation. Neuropathy involves nerve damage that more often causes constant pain along with numbness and sensory loss.
Can chronic pain affect memory and concentration?
Yes. Research shows that chronic pain, including trigeminal neuralgia, can lead to measurable changes in brain function — affecting memory, attention, processing speed, and executive function. This is sometimes called 'brain fog' and has a real neurobiological basis.
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