When I first found out I had trigeminal neuralgia, I did not really know much about it. I had heard of many illnesses before. I knew about conditions people spoke about openly. I knew about pain that others could recognise, understand, or at least try to imagine. But trigeminal neuralgia felt different.
It was not something I had grown up hearing people talk about, and it was not something many people around me seemed to understand. When I mentioned it, a lot of people did not know what it was.
That stayed with me.
Why I wanted to write my trigeminal neuralgia story
I think the main reason I wanted to write It Is What It Is was because I wanted to raise awareness about trigeminal neuralgia. Until it became part of my life, I did not fully understand it either. I did not know what other people thought about it, whether they had heard of it before, or whether they understood what it actually was.
The more I spoke about it, the more I realised how little it was spoken about.
That made me feel that my trigeminal neuralgia story was important to share. I knew of a few people in my own area who had it too, and yet it still felt like something hidden. It was almost like a taboo subject, or maybe simply something people had never heard of properly before.
Either way, I felt it needed more awareness.
Trigeminal neuralgia is more than a medical description
Trigeminal neuralgia is often described as a condition that causes severe facial pain. But when you are the one living with trigeminal neuralgia, it becomes more than a medical description. It becomes part of your routine, your emotions, your conversations, your fears, your strength, and your way of seeing life.
“Writing my story was not about wanting sympathy. It was about honesty.”
I wanted people to understand what trigeminal neuralgia can feel like from the inside, not just from a short explanation. I wanted to share the thoughts, emotions, and reality that come with living with a condition many people still do not understand.
Sometimes people only see what is on the outside. They do not always see the pain, the worry, the tiredness, or the strength it takes to keep going.
A way to explain what I could not always say out loud
I also wanted to write the book because I needed a way to express my thoughts to my friends and family.
At the time, I could not really talk properly, and what I was going through was not something I could easily explain in a text message. A text message can give someone the words, but it cannot always give them the feeling behind those words. It cannot show the emotion, the fear, the pain, or the expression in your voice.
I did not want to worry my friends and family more by sending messages that could be misunderstood or read without the feeling behind them.
Writing gave me a way to explain what I was going through in my own words.
It allowed me to share the reality of trigeminal neuralgia, not only as a condition, but as something that affects your life, your emotions, and the people around you. I wanted the people close to me to understand what I could not always say out loud.
That is why telling the story mattered to me.
Awareness matters
I also realised that I was not the only one. There are people living with trigeminal neuralgia who may feel misunderstood, unheard, or alone. Even knowing that a few people in my own area had it made me feel more strongly that this condition needed to be spoken about.
Because awareness matters.
When people understand a condition better, they can respond with more kindness. They can listen differently. They can stop assuming. They can realise that just because someone looks fine does not mean they are not dealing with something painful.
That is one of the messages behind It Is What It Is.
The meaning behind It Is What It Is
The title itself says a lot. There are things in life we do not choose. There are things we have to face, even when we do not feel ready. Trigeminal neuralgia became one of those things for me.
I could not pretend it was not there. I could not make everyone understand it overnight. But I could choose to speak about it in my own words.
I could choose to turn my experience into something that might help someone else.
If one person feels less alone, it was worth writing
Of course, sharing a personal story is not always easy. People will always think what they want to think. Some will understand, some may not, and some may never fully realise what it feels like unless they experience it themselves. But I have learnt not to focus too much on that.
The important thing is that the story is honest.
If one person reads my book and feels less alone, then it was worth writing.
If one person learns what trigeminal neuralgia is because of my story, then it was worth sharing.
If one family member, friend, or loved one understands someone’s pain a little better, then it was worth putting the words on the page.
For anyone living with invisible pain
It Is What It Is is my trigeminal neuralgia story, but it is also for anyone who has ever felt that their pain was invisible. It is for anyone who has tried to explain something that others could not see. It is for anyone who has had to be strong, even when they did not feel strong.
I wrote this book to raise awareness.
I wrote it because trigeminal neuralgia is not spoken about enough.
I wrote it because many people still do not know what it is.
I wrote it because people living with trigeminal neuralgia deserve to be heard.
And I wrote it because sometimes, when you cannot explain everything in the moment, putting your thoughts into words becomes the only way to truly be understood.
This article is based on lived experience and personal reflection. It is not medical advice. Always speak to a qualified healthcare professional for diagnosis, treatment, or medical guidance.