I want you to imagine if you can a world in which narcolepsy is known rather as sniffelepsy and it’s main symptoms of “sleepiness and cataplexy” are instead “having a runny nose… and sneezing”
In this world as a Type 2 Sniffelepctic your main symptom would be having a runny nose, but not just any runny nose… it would be an excessively runny nose everday. Like a faucet as they say.
When you would tell people about your sniffelepsy, they may or may not think much of your struggle, after all they themselves have had plenty of runny noses and can therefore even offer you advice such as “just keep a box of tissues in your car” or “you should just blow your nose harder” etc.
Type 1 sniffelepsy or “sniffelepsy with sneezing” is quite another matter. You see only a small fraction of the population of this hypothetical world actually knows what sneezing is. Most have never knowingly seen it, or even heard of it. What’s more, most of those that do feel they know something about it were unfortunately misinformed and so their understanding of it is basically just wrong.
Even doctors can’t seem to understand it much better than anyone else, often making peculiar statements like “Sneezing? No, you are not sneezing. It’s ahhhh-chew, not kablahhhh-chew. What you are doing is nose-coughing. Not the same thing. Become more responsible with your nose hygiene and it will clear-up”
This response that somehow you are probably NOT really sneezing is beyond frustrating to you considering how different and distinct this strange new symptom is. You could not simply have made this thing up.
As a tentatively diagnosed Type 2 sniffeleptic you had been substantially ahead in knowing what sneezing was. There was after all the chance that your symptoms would progress into Type 1, and so you had read up on sneezing quite a bit but the available info was scarce, vague, and often confusing and even oddly contradictory. There had been subtle signs though… a strange tickle in the sinuses… and the sudden unexpected and strange wrinkling up of the face. You weren’t sure though. How could you be?
Nothing had really prepared you for that day when it finally happened – a bizzare little facial explosion. Explosion? Not quite sure what to make of it, you just tried to move on with your day but when it struck again ten minutes later with a force that nearly knocked you off your feet, your first thought was only that you must be dying! Wait though… had the explosion come from the nose? Could it be? Frantically you revisit the issue with new eyes. There can be no doubt – it is a sneeze! The realization of it shocks you to your core – obviously you must now have become a Type 1.
You tell people how odd the sensation of it is, how unlike anything it is you’ve ever experienced before. You carefully explain how; much like a hiccup, the sneeze is involuntary and nearly unpredictable. More importantly, unlike a cough or a yawn, you can’t just DO a sneeze at will.
It seems though to be coming from all around you; from the doctors who themselves don’t know what sneezing feels like, from friends, employers, and even from diagnosed sniffeleptics themselves – the subtle insinuation that maybe you just “think” you are sneezing.
Often it comes in an even more accusatory manner; “You are not sneezing” they say upon reviewing your sneezing video, “whatever it is you’re doing has three syllables instead of two, and the blink on your “chew” is way too premature and far too lengthy, therefore it just cannot BE a sneeze”
Often from the large online sniffeleptic community you joined comes the mantra “just get tested!” – and so you do… and you really have no choice… because to get the anti-sneeze medication you need to stop the rapid destruction the sneezing is doing to your life you MUST have a diagnosis of sniffelepsy.
So a year later after enduring the unending skeptism, the humilation at every turn, and after jumping through every hoop the system had put in front of you, and your face which has suddenly aged a decade from the brutal contortions of the symptom, is now also an angry shade of red from the relentless breaking of blood vessels from this thing that now happens with such force and regularity you can no longer drive…
and after you’ve lost your job… twice… and so many other things you can’t even bring yourself to think about…
your doctor, who in all ridiculousness has the sole ability to grant you relief from this misery, but has never once himself experienced a sneeze, tells you that YOU… are most likely NOT really a sneezer because you are in fact not even a sniffeleptic! With test results in hand he informs you that your sniffs-per-hour are in the normal range and you cannot therefore have sniffelepsy.
In frustration you leave having gotten no nearer to getting help and you just want to know what do sniffs-per-hour have to do with sneezing anyway? Later as you find no answer to that question anywhere on the internet, you are just left wondering – what is wrong with this world?
Good thing our world is not so ridiculous right? Actually I’m sorry to say it is exactly that ridiculous… otherwise I wouldn’t have gone through all the effort it took to express this analogy – which is my best effort to try to communicate what it feels like to have something like cataplexy destroying parts of you and your life while the simple treatment is withheld even though there is no logical reason TO withhold the treatment… other than that the longer the diagnosis is withheld the more money all involved in the process make. All things considered, and I do mean ALL things, especially the part where I am being DESTROYED by untreated cataplexy – what else am I really to conclude? That they are being careful with my health?
Typically the process for diagnosing narcolepsy gets drawn out for up to a decade. As many as eight very expensive sleep studies is not unusual… as well as MRI and CT scans, EEG monitoring, referals to neurologists, pulmanologists, cardiologists, rhuematologists. endocrinologists, sleep-specialists and of course sometimes even psychiatrists. It goes on and on and on seemingly for as long as it possibly can.
Even after attaining this oh so rare diagnose narcoleptics that for any reason need to change doctors, often have to start all over again. Yes seriously!
In reality all that needs to happen for the person suffering is for any doctor to simply believe that what they say is happening to them, is happening to them. Cataplexy is the name of a symptom anybody experiencing it can easily identify according to its definition which goes something like this:
“Cataplexy is a sudden muscle weakness or paralysis that comes on during the day and is often triggered by strong emotion which can cause the person to collapse though remaining conscious. Frequency of cataplexy episodes varies widely among people with narcolepsy”
To really complete my communication effort we need to step you back into the analogy one more time and take another closer look at your suffering as an undiagnosed sniffeleptic.
It needs to be understood that in this world where only a tiny sliver ever really know what sneezing is, to be a proper parallel symptom sneezing must possess the same peculiar attribute as its counterpart… so let’s go ahead and give it that; just like the “cataplexy” of our world, the sneeze of the sniffelepsy world is also triggered by strong emotion… for example; anxiety.
How much extra anxiety do you suppose as an anxiety triggered sneezer are you going to have in a world that withholds sneezing treatment from you based on test results that have little or even nothing to do with sneezing? What effect on the frequency of your sneezing is this going to have? Can you imagine?
If I did this right and kept your attention I’m hoping you now know what I mean by saying that having the authenticity of my cataplexy symptom in doubt feels as frustrating as it would be if people for no good reason started implying that your sneezes, aren’t really sneezes.
