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‘It’s Like Shards of Glass Being Pushed Into Your Face.’
The pain of trigeminal neuralgia is enough to drive people to suicide. And yet no one has even heard of it.
Imagine having a form of facial nerve pain so bad that you are unable to work and rarely leave home. A dentist removes all your teeth, even though the pain isn’t dental. It might take you up to 20 years to get a diagnosis, if you ever get one. Yet there is no drug treatment for what you have, only a highly invasive operation with a patchy track record of success.
Your condition isn’t registered as a disability so you may end up fighting to keep your house. You spend days in the corner of a room, rocking with pain
and the side effects of painkillers and antidepressants. Loved ones abandon you because they can’t cope with all your complaining, and you may even be driven to contemplate suicide.
And yet no one has even heard of what you have. Or if they have, they don’t really believe you.
All of the above is a real scenario, as I learnt in an eye-opening conversation with Aneeta Prem, black belt judo instructor, magistrate, campaigner against forced marriage and female genital mutilation — and sufferer with trigeminal neuralgia. When she was first affected, she hadn’t heard…
