I felt a strange sense of relief when I was finally diagnosed with Trigeminal Neuralgia (TN). After so many years of living with facial pain, my doctor gave me a solution and reassured me that medication would help. However, once I googled TN, I made a shocking discovery. Almost every entry in my search included the line “also known as the suicide disease”.
The diagnosis suddenly felt more frightening than the pain itself. What kind of future lay ahead? Did I even have a future?
The pain was bad enough. Did it really need such a negative and disturbing nickname?
This brought up a lot of questions for me. If so many sufferers had taken their lives, why wasn’t “the suicide disease” more well known? Why wasn’t it making headline news? Why did doctors and dentists not recognize the symptoms straight away? Wouldn’t they be more concerned about patients with facial pain?
Not only did I discover this shocking nickname, but I also found memes on social media showcasing the percentage of suicides due to Trigeminal Neuralgia. Some memes claimed that 26% of sufferers take their own lives. Others claimed an astonishing 50%!
After setting up a Trigeminal Neuralgia awareness page in 2012 with the help of another admin, we tried to research the true figures of suicide rates. We found that no credible sources had released any statistics relating to suicides amongst TN sufferers. This means that the statistics shown on those memes were made up.
We found a chiropractor’s research article from 2009. He made the claim that half of TN sufferers would commit suicide within three years of having the condition. But he gave no reference as to where the statistic came from. We could only presume he fabricated this number.
I’ve been very active in the TN community for over ten years. If 26% or 50% of sufferers had taken their own lives due to the “suicide disease”, I would most likely have lost many friends. But that’s not the case. I’ve heard of two or three “possible” cases in that time. I’d rather there were none at all, but the reality is not even remotely similar to those statistics.
At One Time, The Nickname Was Justified
Trigeminal neuralgia was first documented centuries ago. In the early 1900s, a doctor started referring to it as the “suicide disease”, since no one really understood the condition and no medications helped. Some doctors would perform brain surgery, but there was very little chance of surviving it. Opting for surgery was considered as good as suicide at that point in time.
There’s no doubt that trigeminal neuralgia is excruciatingly painful. The condition causes severe pain in the side of the face, and it’s often compared to electric shocks jolting the face. Health workers sometimes describe it as one of the most painful conditions known to mankind. People with TN often do suffer from depression and may even have suicidal feelings. But that’s true for sufferers of any chronic pain conditions, not just Trigeminal Neuralgia. No matter the cause of their pain, sometimes people cannot cope. But having trigeminal neuralgia does not make a person more likely to take their own life.
In the past, there may have been a good reason for using that nickname. But surely, now we have more hope? After all, there is a growing awareness and understanding of the condition.
Scientists and pain specialists are researching the causes of TN and looking for better treatments. There are medications, surgeries, and procedures which can help. Vitamin B12, medical marijuana, botox, acupuncture and chiropractic treatments have also provided pain relief to some sufferers.
The Nickname Gives Shock Value
The nickname does provide shock value, especially if you’re trying to sell headlines. Newspapers and websites write stories about TN with the nickname emblazoned in their headlines to catch attention. They’re not trying to bring awareness to the condition. Instead, they are simply using the sensational headlines to sell newspapers and bring in viewers. It’s also easier to remember than ‘trigeminal neuralgia’.
Sometimes sufferers have problems describing how severe their pain is and think that using the nickname will explain it. They often think its use is justified due to the level and intensity of their pain. However, they may not be thinking about how it can be scary to hear that, especially if you have just been diagnosed with the condition.
The Nickname Does More Harm Than Good
Suicide is an extremely serious, emotional subject which shouldn’t be glossed over. Using the term “suicide disease” is insensitive. It is an offensive and upsetting nickname to many people, especially if they have lost someone to suicide.
When people associate TN with a sensational, out-of-date nickname and false statistics, they won’t believe anything else we say. We need to be believed.
The shock value can stop people from listening. Not everyone feels comfortable talking or hearing about suicide. So, instead of listening, they turn away. The nickname might even make them think we are attention-seeking.
This nickname hangs over some sufferers and their families like a heavy, black, threatening cloud. A child may worry that his parent could end their life. That is a massive burden on a child’s shoulders. Children also suffer from trigeminal neuralgia. A ten-year-old girl once told her mother that she knew she would die soon because she had read about the nickname. Another girl overheard her doctor use the term “suicide disease”. It was totally unprofessional of the doctor. And cruel.
Even worse, the nickname might actually make some people contemplate suicide. They may believe that taking their own life is the only option. It is not.
Moreover, if someone with TN does feel suicidal, their plea for help may be ignored because it’s thought they are just using that nickname to describe their pain. Anyone who feels suicidal needs to be heard. A nickname and an actual feeling are two entirely different things.
When someone within the TN community passes away, some people presume the death was caused by suicide. Grieving families have sometimes had to put a stop to rumors. This should never need to happen.
We don’t need a nickname
Awareness only works if people understand what the condition is. By using this nickname, non-sufferers will know nothing about the condition itself. Is it relating to a pain condition, a terminal illness or a mental health problem?
We need people to know the real name and understand what Trigeminal Neuralgia is. The only way we can do that is by talking about it and naming it properly. If we say the name often enough, people will remember it. If we describe the pain well enough, people will understand and be shocked by it.
People understand what cancer, diabetes, and arthritis are. The same can be done for Trigeminal Neuralgia if we call it by its correct name, explain the pain well and give accurate facts. I believe that’s what we need to do.
While I was first researching those fake statistics, I wrote to several TN specialists to ask their opinions. None of them could recall any patients taking their lives and they all agreed that the nickname is frightening and outdated. We need to leave this nickname in the past.
Trigeminal Neuralgia Sufferers Need Hope
Trigeminal neuralgia shouldn’t be sugarcoated – that would be equally wrong. But that nickname promotes so much fear and hopelessness.
Trigeminal neuralgia is difficult to live with, but surely it’s time to promote hope, not fear.
If you are suffering from depression or you have suicidal feelings, please speak to your doctor or a helpline. More can be done to help you.
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