Why Trigeminal Neuralgia Needs to Lose its Nickname

Billy Bones. Roribug. Little Bear. Flop-Eared Houndybeast. These are some of the nicknames I have for my daughter and grandchildren. Well, the last one belonged to our dog, who had many and varied nicknames. The kids don’t have floppy ears.

I’m sure we’ll all be familiar with the concept of nicknames as affectionate (or otherwise!) terms for people and things in our lives. Usually, nicknames will carry some characteristic of the thing being named. The Millenium Bridge across the River Tyne, in Newcastle, UK, is often called The Blinking Eye, in reference to the way it looks when tilting to allow ships through.

Nicknames serve a useful purpose. They badge our emotional and intellectual relationship with people and things. Anybody who hears me referring to the UK Prime Minister as Theresa Mayhem would be in no doubt about my opinion of her.

Sometimes, people use nicknames for their chronic illnesses, or to refer to themselves. Spoonies has been coined to refer to people who deal with fatigue as a major component of their illness, based on the idea of spoons as energy units. Zebras is often used to describe people with Ehlers Danlos Syndrome, although personally I prefer Loose Women, as my friend describes those of us with joints that dislocate at a whim. Another friend, who runs a support group for people with chronic fatigue related illnesses, talks about Munted Men and Tired Tarts.

These are nicknames, to raise a smile – satirical, witty, with a touch of resignation.

But some nicknames have much darker connotations.

Type ‘trigeminal neuralgia’ into Google, and you’ll get screeds of articles calling it ‘suicide disease’. Nothing to smile about there – it’s a name we need to stop using.

Why Should We Stop Using TN’s nickname?

It’s Wrong

I was first diagnosed with Trigeminal Neuralgia six years ago. Every few weeks since, my now 89 year old father-in-law asks me how I’m feeling.
He’s not talking about pain levels.
He’s been googling.

Google is chockfull with articles on trigeminal neuralgia. The problem is, many of those articles are chockfull of melodramatic fiction masquerading as medical fact. Like the ones that claim 25% of people with TN kill themselves within the first year, or that 26% within 2 years, or 50% within 3 years (somewhere in those articles is often a promise of a miraculous cure by an unregistered quack, but worried people often don’t recognise snakeoil when it slithers down the page in front of them. Chronically ill people often don’t either – when people are suffering and desparate, they are more susceptible to false promises).

I spend a lot of time reassuring him that I’m in no danger, and that the claims he has seen are wrong.

But how wrong?

In UK: less than half a per cent of suicides are people with TN.

There are 1 in 10,000 (6,000) suicides and 1 in 20,000 (3,000) TN patients.

Worldwide, there were 42 TN related suicides in 2004 – eight in the U.S, and 34 elsewhere. (from Understanding Trigeminal Neuralgia: TNnME)

What if all those other 34 were from the UK? 34 is 0.01% of the number of people in the UK who have trigeminal neuralgia.

In US: again, less than half a per cent of suicides are people with TN.

There are aprox 40,000 adult suicides and aprox 45,000 TN patients.

There were eight TN related suicides in the US in 2004.

Eight is 0.02% of the number of people in the US who have trigeminal neuralgia.

If there were any accuracy to the claims, then there would be between 750 to 1500 TN related suicides per year in the UK, and 11,250 to 22,500 in the US. People would notice. Research shows that people with chronic pain conditions are twice as likely to make a suicide attempt than those without. Military veterans are also twice as likely to than non-veterans. Rates for autistic people are higher than the national average. Rates for LGBTQ people are three times higher. All this shows is that people struggling with any difficult emotional burden are more likely to consider suicide than those who are not. TN is not a special case warranting a special name.

That’s just the facts, of course. And for many people, facts alone just aren’t all that persuasive. Because the name probably has an emotional connection for them. If you know one person who has taken their own life because of trigeminal neuralgia, facts and numbers become meaningless.

My opinion of the name is not based only on facts. There are plenty of emotional and ethical reasons too:

It exacerbates unhealthy emotions

Some say TN is called ‘suicide disease’ because it makes them have suicidal thoughts.

It’s not uncommon for people to experience suicidal thoughts, either from the stress/depression of living with long term pain, and/or side effects of medications.

But suicidal thoughts are not inevitable. They are not a unique feature of TN. People struggling with any longterm health challenges are more prone to them than healthy adults. Equally, people struggling with any challenging life situations are more susceptible than people whose life is moving along just swimmingly, thank you.

Using a nickname that labels TN as a hotbed for these kinds of thoughts does nothing to solve them. If anything, I suspect the need creates more of a self-fulfilling prophecy – if you have the ‘suicide disease’ and begin having suicidal thoughts, you’re more likely to think it’s just a normal inevitable facet of the condition.

It’s not inevitable.

Yet many TN patients struggle far more than warranted with depression and fear because they believe the hype of the name and those invented numbers. Depressed and frightened people become stressed people. Stress often exacerbates pain conditions. Worse pain exacerbates stress, depression and fear. so people often become locked into a carousel of negativity and emotional damage.

Suicide is illegal in many countries. Mental health issues have considerable social stigma in most countries. As a consequence, people with suicidal thoughts or intentions often feel ashamed or guilty, and endeavour to hide their feelings rather than seeking proper emotional help and support.

It’s callous

TN is such a rare condition, few dentists or doctors recognise it. It is a neurological condition but even neurologists find it difficult to diagnose, and many will never come across a case. After diagnosis, patients need to take charge of their own learning to find out more. I’ve had to educate my own GPs.

Most TN patients are not medical researchers though, and wade through a minefield of poorly-researched, factually-sparse, sensationalist material (NB: Mayo Clinic, Johns Hopkins, British Medical Journal or the NHS are good sites to visit for medically accurate, evidence-based, realistic information), most of which perpetuates the mythical suicide rates for TN. To read almost everywhere that your condition is called the suicide disease because there’s a 50% chance of taking your life within 3 years is terrifying.

Describing a non-fatal health condition shows callous disregard for actual suicide victims and survivors.

Prevention programmes always advise that honest, accurate reporting is essential to help reduce suicides. A term like this is anything but honest or accurate.

It’s outdated

Trigeminal neuralgia is a condition that has been described in medical journals etc for several centuries. Describing TN as suicide disease is a historic label that predates the twentieth century.

It comes from a time when there was no viable form of treatment or relief.

Ineffective opiates were all doctors could prescribe, which did diddly-squat to relieve TN pain.

Or, by the late 1800s, surgeons could perform a crude type of brain surgery, with poor outcomes for patient relief, and 20% death rate.

Surgery was often seen as suicide:

Birks developed a classic case of trigeminal neuralgia in 1900 at age twenty-eight. His local doctor, the best in Montreal, gave him huge doses of the painkiller phenacetin but warned him against relying on opiates. Birks vainly sought relief from unnamed doctors in Philidelphia. ‘Birks, you’re a fool,’ he was told, ‘you have but two choices – opiates or suicide.’ Birks went to London, where the famous neurologist David Ferrier, determined to find something that would work, prescribed more drugs, electrotherapy, and the services of a hypnotist. Ferrier had heard of the ganglion operation but considered it, Birk remembered, ‘as a last desperate resort – a sort of polite way of committing suicide. Dr Harvey Cushing.

Harvey Cushing, known as the ‘father of modern neuroscience’, revolutionised brain surgery and neuroscience. By 1914, his pioneering work developed better outcomes for patient relief, and saw death rate from TN brain surgery drop from 20% to 0.6% – 1 person in 1,000.

Nowadays, the average death rate for TN brain surgery is 0.3% – 1 person in 2,000

The idea that surgery was a form of suicide has been obsolete for over 100 years.

The nickname should be obsolete too.

It’s melodramatic and implies no other solutions

I don’t like the term suicide disease, because it implies that suicide is the only answer to this problem, and it is not. Dr Keith Roach

The thought of suicide being the only solution is frightening.

Badging a condition as suicide disease exacerbates that fear.

It also implies that suicide is an inevitable answer. That is so far from the truth. While there is no definitive cure available for TN, there are many medical options available for the physical pain – surgery, minor surgical interventions, medications, pain management therapies and other remedies, plus continuing research into developing new treatments. There are many strategies, agencies, support groups, counsellors, self-help books etc available for helping anyone with emotional and mental health issues. Suicide is not inevitable. It is preventable.

Many people say using the nickname helps them feel ‘badass’ and in control, because the name reminds people how ‘dangerous’ TN is. They are proud to be strong enough to ‘beat the odds’.

Many people say TN kills. That’s why they use the nickname.

TN is not dangerous. It’s not life-threatening or terminal. The ‘odds’ are less than half of one per cent, remember. You only beat the odds if you were suicidal yourself. I haven’t beaten any odds by still being alive after 45+ years with TN. I’ve never been at any risk.

It is difficult enough adjusting to life with a debilitating chronic pain condition and learning how to manage it well. Using a melodramatic name that makes such an awful and irreversible solution look like the only solution piles on extra loads of unneccesary difficulty.

It’s spurious

Some TN patients justify using the nickname because they say it’s the only way to describe to other people the intensity of TN pain.

But it doesn’t describe pain.

Adjectives describe. If you’re stuck for words, a thesaurus is full of them. Here are a few that describe the pain of TN.

slicing, stabbing, jabbing

drilling, hammering, scraping

zapping, piercing, tingling

freezing, burning,

aching, throbbing

Ever had a toothache or migraine bad enough that you wanted to rip your head off? Similar experiences help to describe and explain. Can you imagine what it might feel like to be tasered, to be hacked at with an ice pick, to be electrocuted, or hit by lightning? Analogy and metaphor are effective descriptors to help people feel something they have never experienced.

Not fluent with words? A well-calibrated 1 to 10 pain scale helps describe the physical impact of pain.

It’s manipulative

‘Suicide disease’ sounds so much more urgent than trigeminal neuralgia, doesn’t it? More harmful and dangerous. Fatal.

Most people have never heard of trigeminal neuralgia. Most people will never experience physical pain anywhere near as extreme as trigeminal neuralgia pain. But everyone has heard about suicide. Suicide scares people, it worries people.

At best, people use the nickname from a lack of awareness: they’ve never questioned the validity of the name (nor the statistics), and never thought about how it causes distress and fear.

At worst, people use the nickname as an emotional weapon: for sympathy (my condition is so painful it’s called…), for control (stop telling about your problems – my condition is so bad it’s called…), to compare (my TN is worse than your terminal cancer, or her fibromyalgia, or his cerebral palsy, because mine’s so bad it’s called… ), as a threat (be nice to me, because my condition is so bad I’ll probably…).

Even if people don’t intentionally use the name to manipulate others, it still has that effect because it plays to insecurities and fears and untruths.

It’s a mockery

Suicide is not a joke. People take their own lives because whatever they are suffering with is beyond their capacity to cope. It is far more prevalent than the miniscule percentage as a result of TN. Suicide wrecks lives, tears families apart, leaves survivors grieving, confused and often burdened with guilt.

Calling TN suicide disease is a joke – a malicious, practical joke we should all stop playing.

What can we do to change things?

Stop using the nickname ourselves.

Ask people who use it to stop – tell them it makes you uncomfortable

Demonstrate healthy, effective ways to talk about TN.

Don’t share articles that overuse the name, or seem to sensationalise it

Don’t share articles that include the false statistics

In some cases, websites like news organisations may remove articles when asked if readers object to suspicious or false content such as the false suicide statistics for TN.

Encourage people if they are having suicidal thoughts or intentions to acknowledge them. Hiding emotions behind a nickname lets them fester. Sharing emotions with someone who cares enables them to get help and support.

Find out more about suicide and suicide prevention

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Important Note: 

If you experience suicidal thoughts or intentions, it is vital to get help. The best way is to be honest and open with people who will help. State your feelings. Discuss them and ask for assistance finding solutions. Contact your doctor or a helpline for support. You don’t need to struggle alone.

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