(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.)
This conversation has actually happened. More than once. I will use the abbreviation F which could stand for “family” or “friend”.
F: “I’ve heard you’ve been sick. How are you feeling?”
Me: “Well, I’m not exactly sick. I have a condition called Trigeminal Neuralgia”
Me: “Trigeminal Neuralgia. It’s a progressive chronic pain condition affecting the trigeminal nerve system that sort of snakes its way around my head.”
F: [blank stare]
Me: “My face hurts.”
F: “Ooooh! Do you want a Tylenol?”
I don’t recount that common conversation with hostility. No one has heard of this condition, so I really don’t expect not to have to explain myself. But therein lies one of the biggest challenges of having TN: no one has any idea what I’m talking about (unless they have it, also).
Having any chronic illness is difficult. Having one that nobody has heard of adds a whole different level of complexity. First there is the whole diagnostic process. Some people just don’t have access to doctors who have even heard of this condition. And for some of us, it is more a diagnosis of exclusion than an easily-verified disease. Next, the “wheel of pharmaceuticals” we all spin. There are no dedicated medications for TN and even those that work are often not eligible for insurance because they are prescribed “off label”. Each of us go through an often lengthy process to find drugs that provide some relief. And good luck getting disability. Little data has been gathered on people with TN so some sufferers are received with skepticism by their doctors. There are several surgical procedures, but no definitive cure. Heck, we don’t even have our own dedicated ribbon color – TN shares theirs with other conditions (it’s teal btw).
I’m pragmatic. I don’t think funds should be diverted from say, breast cancer or brain cancer research, to studying TN. In reality, our small numbers make that impractical. Add that to the fact that TN is not a fatal condition. Yet at the same time, it is frustrating that the “most painful diagnosis known to man” doesn’t get a little more attention by the medical community. You’d think some med student or doctor would find some personal challenge in identifying a cure.
We need a spokesperson. Someone famous. Someone famous who is universally liked because they are a good person. No…wait…I wouldn’t wish TN on aa person like that. I wouldn’t wish TN on anyone.
(Note: I realize there may be some redundancy between this and past posts. It may be because I’m running out of things to say, or because my meds have fried my short-term memory. Or a little of both.