A personal account by Aneeta Prem MBE. This is lived experience, not medical advice.
For years, I lived with severe facial pain without knowing what it was. I kept working, kept travelling and kept telling myself there was nothing wrong.
The hardest part was not only the pain. It was beginning to doubt whether I had any right to feel it at all.
The pain I called toothache
Around 2010, Mum and I were regularly travelling between London and our new home in Norwich. We had bought the house the year before. It was part of an old manor, beautiful and slightly terrifying, and financially we had stretched ourselves much too far. Our London house had not sold. There was debt, worry and a weekly commute.
At almost the same time, I had established Freedom Charity. Life was getting bigger, busier and more complicated.
And then there was the pain.
I remember being in my Mini with Mum when a vicious pain hit the right side of my mouth. I was convinced it was my wisdom tooth. What else could it be?
I had no vocabulary for what was happening. Today I know words such as trigger, electric shock, stabbing and burning. Then I simply knew that something inside my face hurt so badly that I wanted to bite down on something. I remember thinking I needed an adult teething ring.
I tried boiled sweets and veggie gummies during those journeys, searching for something to press against the pain. Mum had to endure mile after mile of my driving and wailing.
I went to my dentist. The X-ray looked normal. He wanted to leave the wisdom tooth alone. I wanted it out.
I was desperate enough to insist.
For a short while after the extraction, the local anaesthetic numbed everything and I thought I had fixed it. Within hours, the pain was back.
How could I have toothache when the tooth that supposedly hurt was no longer in my mouth?
That question should have sent me in the right direction. Instead, it sent me deeper into doubt.
Nothing wrong
I saw doctors and pain specialists. I tried to explain a sensation I had never experienced before and did not know how to describe.
Before one appointment I actually Googled words for pain. I felt as though I needed to revise before seeing the doctor.
Which side? Could I eat? Did brushing my teeth hurt? Did it sting? Could I open my mouth? Had I seen a dentist?
I became desperate to give the right answers because I thought that if I could only explain it properly, somebody might finally understand.
An early MRI did not provide the answer I was hoping for. I had opened the result imagining that they might find something simple and, perhaps rather naively, that there would be a tablet and it would all stop.
Instead, the message I took from appointment after appointment was: nothing was wrong.
At first that sounds reassuring. Live with unexplained pain for long enough and it can become something else entirely.
Perhaps it was stress. Perhaps the pressure of the charity, the house, the debt and the travelling had done something to me. Perhaps it was psychological. Perhaps I was mentally ill. Perhaps I had somehow created the pain because I could not cope.
Eventually another thought crept in: perhaps I deserved it.
So I worked harder
If there was nothing physically wrong with me, I told myself I had no excuse to stop.
So I worked harder.
Seven days a week. Long hours. Huge amounts of travelling. Too little sleep. Freedom Charity was growing. People needed help. There were meetings, campaigning, writing, school visits, media interviews and the ordinary pressures of running a charity. I was also sitting as a magistrate.
Some mornings I left home at four. Some nights I barely slept.
I think work became a form of punishment.
If I was imagining the pain, I did not deserve to give in to it.
And because I continued to function, I used that as evidence against myself.
You drove to London. Fine. You worked all day. Fine. You sat in court. Fine. You ran the charity. Fine. You got through another day. Fine.
Except I was not fine.
I was going home and screaming.
For years I fought the pain every day while refusing to admit, even to myself, how much pain I was in.
My world became smaller
I became very good at hiding it. The public Aneeta carried on. My immediate family saw what other people did not. They got the tears, the anger, the exhaustion and the version of me that had nothing left.
Slowly I stopped doing ordinary things.
I stopped going out socially. I stopped walking for pleasure. I avoided situations without really understanding why I was avoiding them.
I did not yet have the word trigger. I just knew that certain things might hurt.
Touch became complicated. The hugs stopped. Intimacy changed. An unexpected kiss, somebody moving close to my face, even another person's breath could make me instinctively move away.
My darling dog Deeva could not possibly understand any of this. She wanted to be close because that is what dogs do. I adored her. Yet there were times when even feeling her breath near my face was torture.
So I moved away.
From the breeze. From the open window. From a hand near my face. From a kiss. From the dog I wanted to cuddle.
There is no announcement that this is happening. You simply stop doing things because you are trying to protect yourself.
Eventually protection can start to look very much like isolation.
How do you describe pain you have never felt before?
This is one of the things I understand differently now.
Once somebody gives you the language, it becomes easier to describe what is happening. You learn to recognise patterns. You can say that moving air is a trigger, or that the pain is shock-like, or that brushing your teeth can set off an attack.
But before you have those words, what do you say?
How was I supposed to know that something felt like an electric shock through the face when I had never experienced an electric shock through the face?
I reached for the explanations I already understood: toothache, wisdom tooth, stress, overwork, something I had eaten, something I had done.
Eventually I reached for the most damaging explanation of all.
Me.
Then it had a name
Eventually I was referred for specialist neurological assessment in London.
There is a completely ordinary, ridiculous detail from that period that I still remember. Mum and I stayed in Knightsbridge before one of my MRI appointments. She bought me a pair of pretty bear socks from Marks & Spencer, complete with little ears, because MRI rooms always seemed freezing.
I had been asked to bring music. I forgot it.
So there I was: bear socks, an MRI machine and what felt like an eternity of ABBA.
When I returned to the neurologist, my images were on the screen. She began explaining what she could see.
And suddenly the pain that had occupied years of my life had a name.
Trigeminal neuralgia.
I cried.
Not because I wanted TN. I cried because there was an explanation.
I had not imagined it.
A diagnosis did not make the pain disappear. It did something else first: it gave me permission to believe myself again.
Why I listen differently now
Years later, I became Chief Executive of TNA UK, The Facial Pain Charity.
For me, it could never be simply another job.
I know what it is to fear the next attack. I know what it is to lose sleep, withdraw from ordinary life and still appear completely functional to everybody outside your front door.
Since taking on this role, I have spoken to people at some of the darkest moments of their lives. I have known people living with TN who later died by suicide. I have heard from people in such desperate pain that they have asked about assisted dying.
Those conversations stay with you.
When somebody tells me, “I can't do this any more,” I cannot hear it as an abstract sentence. I know something of the place from which those words can come.
That does not make me a neurologist, neurosurgeon or pain specialist. My experience cannot tell me what somebody else's diagnosis or treatment should be.
But it means I listen differently.
I know that the person who appears to be coping may be using almost everything they have simply to keep going.
The story is not finished
There is much more to my TN story than I can tell here.
There were treatments, moments of hope, wind becoming an enemy, something Mum knitted to protect my face, the fear of brain surgery, microvascular decompression and the complicated reality afterwards.
I am writing the fuller story now.
Not because I want pain to define my life. Quite the opposite.
I want to write about what happens when a person who thinks she can cope with almost anything meets something she cannot outwork, outfight or simply refuse to acknowledge.
I want to write about family, money, ambition, work, fear, guilt and the peculiar loneliness of being surrounded by people while hiding something enormous from almost all of them.
And I want to write about what happens when the woman who spent years unable to explain her own pain eventually finds herself listening to other people trying to explain theirs.
For years I thought I had to fight. I just did not understand what I was fighting.
Sometimes, because nobody could tell me what was wrong, I thought the enemy might be me.
It wasn't.
Help and support
This is my personal experience and is not medical advice. Facial pain has many possible causes. Anyone with persistent or recurring facial pain should seek appropriate medical or dental assessment.
If you are in immediate danger or think you may act on thoughts of suicide, call 999 or go to A&E. Samaritans can be contacted free, day or night, on 116 123.