Why Is Trigeminal Neuralgia Called ‘The Suicide Disease’?

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. 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.

If you have been affected by this post, or feel vulnerable in any way, please click here for contact details below for various hotlines around the world. Alternatively, the comments section is always open, but please note I may find it more appropriate to refer you to the link above. ♡

Trigeminal Neuralgia

21 Comments Leave a comment

  1. Your post is well written and touches on a subject that is sensitive to begin with. The thought of ending ones life in any circumstance is just hard for some to fathom and holds such a stigma. Fact of the matter is, this is the most unbelievable pain anyone can imagine! I say all the time that I wouldn’t wish it on my worst enemy…and I truly mean that! I would never want someone to feel this way. A pain you can only describe as someone shoving an ice pic through your temple just above the mandibular joint…and multiply that by ten. I suspect in the days when this phrase was coined the ways in which people were treated medically and diagnosed was not as it is now. I mean even the medication they give now has its limits. But I get it…I don’t feel suicidal, but sometimes the pain can make you lose it! Just a perspective from a TN patient in a full blown flare up!

    Liked by 1 person

  2. Hugh Spencer As one who had really severe TGN – started in 2000, cured (capsaicin) about 7 years later (once I figured out the neural mechanism underlying it). I already had a tree and a straight length of road lined up for an almighty car crash which should have killed me. The debilitating pain was unbelieveable. Luckily I managed to sort it out – and have been completely free of symptoms since then. However, it would have to be the most disabling condition that I can imagine. You can’t talk, you are reduced to eating soup, and too much panadol and tegritol (which has long lasting effects). Crazy thing, is I keep getting requests for treatment – from folks who seem to have exhausted other options – by which time it is usually too late to help them as too much damage has been done to the neural pathways. Capsaicin is a “first time treatment” – if it doesn’t work, then you have to try other approaches. But capsaicin involves pain – a totally different sort of pain, and usually only for an hour a day for 5-10 days. Then if it works, it’s over. Done. Finished.
    I should add – it costs only a few hundred dollars – vs the swingeing costs for hospitalization and neurosurgery (especially for US folk). http://youtu.be/Z8nDVja636g 

 Good luck.

    Liked by 1 person

  3. This was hard to read and as I continued, one tear than another rolled down my face. Not from disrespect but confusion that the negative aspect as media portrays gives us a positive bounce back. Now what if the leverage we use to fight back is non existent to some of us. We all suffer and conquer differently. Irrelevant to this nice short excerpt. Some don’t conquer, it eats us from the inside out mentally and physically. Some watch from inside our homes not pushing our kids on a swing or spontaneously teaching our toddlers how to kick a ball. It sucks but we are alive. And that matters.

    Liked by 1 person

  4. I have suffered with TN for nearly four years now and I remember when my family first read up about the condition and were really shocked when they learnt it was called the suicide disease. I tend to be able to manage my pain daily, keeping away from the triggers and trying to lead a healthy lifestyle. I don’t take pain killers as they don’t do anything to help and I’m on the maximum amount of gabapentin and now also take oxcarbazepine. My last really low point was in October last year where the pain was so bad I couldn’t eat or drink and struggled to get my medication into my mouth and swallow it as I was in so much pain, I remember being at the hospital with the pain team, crying and begging them to help and saying the pain was so bad when I was trying to get some sleep I was hoping I wouldn’t wake up. I can totally understand why people think about it as the pain can be so bad that you go to such a dark place that you think it’s the only way to finally stop the pain. I know my husband, family and friends are so supportive and try to understand what I go through but until you have had this pain only TN sufferers will only ever truly understand. We should all support and learn from each other and not treat is as a competition as to how much pain we are each in. I find comfort in your blog knowing there is someone else out there that knows what I go through on a daily basis, so carry on doing what you are doing!

    Liked by 1 person

  5. Your article speaks to me greatly. I am very interested in the science behind claims as well. Having attempted suicide once before the TN symptoms started, I can’t imagine my mindset when I started to do deep research if I did not already have a friend living with TN that had very openly shared her experiences. Personal stories make this much less scary. I am also fortunate that my visit to the psych ward helped build my skills to handle deep emotional pain are very transferable to physical pain.

    Liked by 1 person

  6. Your article is well written but it does not appease someone so depressed and disgusted with the pain, thus , some commit suicide, especially someone without medical insurance or access to a knowledgeable doctor. A visit to some ERs and a doctor who has no experience with this disease will label you crazy, paranoid and suicidal. I do not wish this on anyone but so few people know of it, don’t take the time to research it and can’t understand it and the intensive debilitating pain, but I selfishly wish more people like celebrities and well known people had it and it would receive the attention that is needed to encourage more research and better treatments.

    Liked by 1 person

  7. I read that it was named the suicide disease before the time of modern medicine. Which would make sense, because I cannot imagine being able to get through an episode without nerve and pain medicine. I’m 26 and was diagnosed November 2019 and all my heart goes out to any being that also has to suffer this unprecedented level of pain. Stay strong.

    Liked by 1 person

  8. You know I have often thought it should be called an “accidental overdose”. When I have been in serious pain, I star throwing in pills. Take what I am suppose to, that did not work so throw in some break through,still in pain, so through in some extra strength Ibuprofen, still in pain So will try some more break through…. My point is that sometimes when the pain is so great we just start throwing in pills to make it stop. I think this happens and some people do not pay enough attention to how much they are throwing in. There came a point that I asked people to not ask about my pain but ask about me, how I am . So that is when I started saying ask How I am, because I am not the pain I AM STILL ME. i WISH YOU ALL WELL.

    Liked by 1 person

  9. Hi, I found this article one of the most interesting to read ever. It’s real and very true to life, I’m sure because it has been written by a real sufferer and, also because it is composed by someone qualified and experienced in the study of the subject. I’m sitting on my sofa, morning after a very aggressive attick during the late morning while asleep in my bed. I had slept through my medication time and left myself open to. Anyway, I can strongly agree with your point of view and how you have faced this subject of TN with its connection with suicide. I hadn’t actually made this connection until I had read certain publications in the media. This morning’s attract was extremely severe and unrelenting lasting just over one hour. I thought that I just wanted the pain to stop, not about suicide. However, I did feel, that if I was on top of a high rise building I would jump. Not the act of committing suicide, just to that I wanted to be able to take control of this pain. I suffer three types of directly related pain, electricity shocks which can be multiple, tooth being pulled without anesthetic and my head being compressed in a clamp. Yes, as I’m sure that you know, I just don’t want to exist, I’d rather be dead (irrational thoughts), but to actually end my life or self harm would be something unplanned and spur of the moment. I’m a very upbeat happy person and my TN is invisible, but I resent the people, public or media for connecting me with suicide at all! I do agree that there are many reasons why a person might want to commit suicide, maybe some actually do happen to have Trigeminal Neuralgia, but show me the proof and stop trying to label me when you don’t know the pain and you don’t know me. I’ve had TN for almost nine years now and I hadn’t even dreampt of a suicide connection until the cruel press made it for me when I was five years in. Now, it’s, (like yourself) easy to talk about, because it simply isn’t true! Thank you so much for publishing this! 🤗

    Eddie (yes I’m a guy, fewer of us, but it’s the same Trigeminal Neuralgia 😁

    Liked by 1 person

  10. Nicely written, and I like your insights. I think though you might find more type one TN patients with feelings of unable to go on. The shocks are so surprising. I have both 1 & 2 – I think 1 gets me hands down. I sometimes get a remission from 1 for a few months but never from 2. I wonder if no figures available might also reflect that there could be some suicides tied to this? I think there have to be, I’ve felt like it in the past from this. It’s a terrible, misunderstood disease. I too have tender hair and teeth. I liked your 7 things post

    Liked by 1 person

  11. Hello my TN was caused by bad orthodontic treatment messing up the way my teeth fitted together. Every time i close my mouth my jaw is pushed to one side and its irritating the nerve. Its a living hell but the positive is that I now know that cause of some cases – its a repetitive strain injury, kind of like carpal tunnel but in the jaw.

    Liked by 1 person

  12. When I’m having a Tn attack the pain is so excruciating I want to die. Death would Put an end to the horrible pain that is why i think TN is called the suicide disease cuz you really wish you would die rather than go through the pain of tn.

    Liked by 1 person

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