Nickname Shmickname

(Today’s blog post is part of the Blogging From A to Z Challenge during which writers all over the world blog each day in April based on a corresponding letter of the alphabet.  These are my personal stories about living with Trigeminal Neuralgia, the most painful diagnosis known to man.)

“The Suicide Disease.”  Now there’s a nickname that’ll stop you in your tracks.  It’s one of the alternative names for Trigeminal Neuralgia along with the more fancy sounding Tic Douloureux.  I dislike the name intensely, although I do use it from time to time.  In a world cluttered with brands, jargon, posts and tweets, “The Suicide Disease” gets people’s attention.

When I was first diagnosed and came upon this alias I kind of thought, “Well that’s just great…”  (I’m a pretty low key person.)  But it freaks a lot of people out. Big time.  And the lack of information on TN only adds to the fear because much of the anecdotal data out there is not only incorrect, it’s sensationalistic.  I’ve seen articles that imply that 20% to 40% of people with TN commit suicide within two years.  Not only is that wrong, it’s irresponsible on the part of whoever printed it.

Here’s what I know…do people with TN have a higher rate of suicide than the general population?  Well my take on it is “no”.  First, it’s important to note that suicide statistics for both groups (TNers and Gen Pop) are less than 1%.  Not twenty.  Not forty.  Less than 1%.  BUT, and this is a big but, I don’t believe that a suicide rate for TNers can be what is referred to as “statistically significant”.  Here’s why… when you’re dealing with a population such as that of the entire US (at 300 million), it takes a lot to move the needle in terms of percentages of anything.  But on a much smaller population – and the number of people in the US affected by TN ranges from about 100,000 to 400,000 – there simply aren’t enough people to draw a concrete conclusion that can be compared to the US overall.

In simple math:

If the population is 100 people and 1 person does something unusual, the rate is 1%.

If the population is 10 people and 1 person does something unusual, the rate is 10%.

The same number of people did something unusual in both cases, but the starting quantity makes all the difference.  Plus, you have to account for the people in the TN population who would have done it anyway which makes the number even smaller.  (I’ve not found a statistic that adjusts the TN number by removing who would have done it anyway.)  And since almost all statistical measurements have an error rate (+/- X%) looking at something with a total of less than 1% is pretty much moot.  (All that being said, I’m open to anyone else’s interpretations of the numbers.)

Additionally, it’s important to note that the name was coined decades, maybe even centuries ago when there were fewer treatment options.  That’s as compelling an argument against the comparison as the math.

Do people with TN commit suicide?  Sadly, they do.  Do people without TN commit suicide?  Sadly, they do too.