I use the phrase ‘the suicide disease’ often. I used to hate it. Now it’s kind of slipped into my vocabulary and I’m used to it, maybe even numb to it. I also feel a little empowered by using the phrase on this website, because everything I write argues against it.

When I first googled ‘trigeminal neuralgia‘, I was knocked back by the amount of media articles about this horrible illness, so painful that people were ending their own lives.. and unfortunately I can say that a lot of what you see in the media is true. This condition is really, really painful. I have fantasised about pulling my own teeth out with pliers if it would only help (graphic, but I’m sure people who have TN can completely feel the satisfaction at the thought of taking the pain away). I’ve had countless nights tossing and turning in bed, willing the pain to stop, just so I can have an hours sleep. I’ve taken almost as many codeine tablets as could cause an overdose and been told by my GP that my liver looks like it belongs to an alcoholic.

Trigeminal neuralgia is absolutely awful and I’m sure people have ended their lives over the pain, but I do know many, many people who live long lives with it and have no intention of dying any time soon.

I decided to look into why my illness is actually called ‘the suicide disease’ and started my research.

Firstly, I thought about suicide, without trigeminal neuralgia.
The problem with studies of suicide is that the data is always wrong. I studied sociology at university and walked away with my degree in 2013. One of the most famous sociological theories of all time is Durkheim’s study of suicide, so I know the topic inside out and have dedicated a large amount of time to looking into studies of suicide. Suicide is nearly impossible to report on, because no one can really know what an individual is thinking. We don’t know if someone died due to accidental overdose.

A suicide is defined after death and is always definined by circumstance, weighed up on a balance of probability – on how the person died, did the person look to be home alone, was an overdose involved, was the person depressed, had they self harmed before?

If someone leaves a note, specifically saying they have ended their own life, we can take this at face value as a suicide. But the rest of the time, we make our own decisions, so the data will always be subjective.
Then I started to look for suicide rates in people with trigeminal neuralgia.
Even if we can be sure a death was suicide, how can we be sure that someone took their own life due to having trigeminal neuralgia? Is it the case that if someone has trigeminal neuralgia and commits suicide, we assume they have killed themselves due to having trigeminal neuralgia, even if other factors have come into play?
I found nothing.

There are no specific facts and figures around suicide rates in people who have lived with trigeminal neuralgia, just articles that state ‘high suicide rates’ and ‘a high percentage of people commit suicide’. I have scoured the internet and I can’t find actual numbers, not even anything vague to back up the nickname.

This isn’t me saying that no one is committing suicide – people with TN do, the same as people in various different circumstances but this is very scary to think people are using the name for my condition with no evidence behind it.

The Facial Pain Association wrote a blog post, stating that the phrase may have come from the low survival rate of brain surgery in the 19th century. There was apparently only a 10% chance of survival, but desperation for pain relief drove many patients to elect for this surgery. I’m not sure how true this is either, but it’s certainly a possible explanation.

I don’t know where the name ‘the suicide disease’ originally came from and neither, it seems, does anyone else. That doesn’t stop the media plastering it all over every article.

Even though I don’t have the numbers, I can tell you from speaking to many people with neuralgia or other types of chronic illness, or pain – depression is a perfectly normal outcome of the diagnosis of a life changing, sometimes incurable illness. I, myself, have fought through some dark times, but I have come out of the other end. Thinking terrible thoughts, feeling excruciating pain and having a very low mood does not equal suicide. I have had people message me to say that they do feel suicidal, but I have also had people message me to say there is a difference between how they feel and actually taking their own life.

Of course, it’s a lot less catchy for the media to post: ‘trigeminal neuralgia, an unbelievably painful, depressing condition’.

Why do other people use the phrase?

I have discovered that, for the most part, people only use the name ‘the suicide disease’ when they want to convey just how in pain and awful they are feeling. Most people I come across don’t like the phrase – they actively reject it, because of the negativity that comes with the name.

However, when I first shared my thoughts on one particular Facebook support page, there was absolute outrage at the thought of me taking the label away from them. A lot of people in that one group very much identified with the label, most stating that they feel it is used because they can see why other people feel suicidal, with some saying they had experienced suicidal feelings themselves, with very few people commenting about the dangerous connotations of the name to newly diagnosed people, or to family and friends.

When you live with an invisible illness, if the nickname is the way that people on the outside can understand how bad it is for you, I can see why a number of people want to hold on to it.

Someone else made a very important statement – there is a difference between feeling like you can’t go on during a TN flare, and sitting down with a plan to end your life. I have felt like I can’t go on, on many different occasions, specifically due to my pain levels, but I haven’t attempted suicide due to my trigeminal neuralgia.

The problem with the name is that if you’re not saying you have felt suicidal and therefore understand why it is called ‘the suicide disease’, people tell you that your pain mustn’t be that bad, or you are dismissing my pain by saying this.
It puts people in two categories – the people who are in ‘real’ pain and the people who just don’t like the name.

Why do I still use the phrase?

Simply, I use the name online, because if someone researches ‘trigeminal neuralgia’ or ‘the suicide disease’, they may end up on the The Pain Corner instead and find something more accurate than an article on a news website and more reader friendly than a medical article. I started my journey with TN looking at the word ‘suicide’ and feeling absolutely hopeless, but I now feel strong and think “the suicide disease? And what? I’m still here”.

To me, it is misleading and scary, but the name is out there, so I will use it to my advantage. Neuralgia does not have to be a death sentence. I’m heartbroken whenever I hear that it has been in some cases, but it does not apply to everyone. Hearing the phrase used to hurt me and scare me, but now I’ve taken back control of it and it doesn’t upset, or terrify me to hear it anymore, because I have used it so much.
It is so important to get across how in pain I am, but I don’t feel like associating my condition with suicide is the way to do so, as people commit suicide for all different reasons. My condition shouldn’t be the one that gets the name.

I have a horrible condition that I live with every single day, but it won’t be what ends my journey.

Finally, I would like to add that I do not wish for this blog post to be disrespectful to anyone with trigeminal neuralgia, especially not to anyone who has attempted suicide, or to family members of people who have committed suicide after struggling with TN. It is the worst pain I have ever known and I am no way minimising anyone else’s pain whenever I manage to do anything someone else cannot – whether that be working, managing a good night’s sleep, or just living with TN. We all have different pain levels on different days, different weeks and different months.

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Trigeminal Neuralgia