I’ve Been Blessed
First of all, I would like to express just how fortunate I am to have been diagnosed with narcolepsy while serving in the military. TriCare, the V.A and DOD do a tremendous job, given the circumstances. I am blessed and forever thankful to them for their efforts. But for others…
The System Is Broken
My doctors were ready to give me all of the required tests, treatments and then some. Why? Because TriCare will pay for just about anything.
What’s bothering me then? What do I have to be upset about? Thinking about the people not fortunate enough to have TriCare and other military benefits, that’s what.
My Xyrem alone costs over five grand a month. Throw in the klonopin, Ritalin, and nuvigil…
I think you see where I’m going, I just want you to imagine what the co-pay on those meds must be. Not to mention the cost of doctor visits, testing, and more doctor visits. I even feel bad for TriCare, they’re responsible for all of my medical costs!
Whose Fault Is It, Really?
Let’s face it, doctors treat us according to our insurance plans. If you’re busting your butt day in and day out at a couple of part-time jobs, you don’t have the best of insurance plans.
But… There’s Always a but
Those of us with narcolepsy aren’t allowed to do certain things, like drive. We need a steady, consistent schedule and we also require naps. There are some who need even more. That’s just for those who are diagnosed and aware of their condition.
Employers are only required to accommodate you if you’re diagnosed and considered partially disabled. Don’t quote me on that one though!
So, now you’re unemployed because your boss thought you were just lazy and careless. Your insurance, if you still have any, isn’t good enough to have weekly doctor visits. You can’t afford the various treatments that are required to prove you are, in fact, disabled.
Now, you’re denied SSD and still expected to “get off your lazy butt and get a job.”
Your doctor restricts every aspect of your life and says you need better insurance.
Or more money.
The unemployment office is tired of supporting you. After so many extensions, they tell you “we’ve done enough, you need to find a job.” So you’re expected to get a job, somewhere with good benefits and a tolerance for nap time. But, you can’t do that because of your many restrictions.
I’m not saying it’s impossible, but good luck on your search!
The Finger Pointing Starts
Society Points At You
Those who don’t know us see a person that’s lazy, useless, careless, and wreckless. Everywhere we go, that’s what people are thinking or saying of us. There are more labels but I won’t say them.
Those Closest To You Point at the Doctors
Your family and friends are “tired” of taking care of you. They claim your doctors are discriminating against you and so is the government.
You aren’t fun to be around because you’re either sleeping or about to sleep. Your mood swings aren’t that pleasant either.
You Point at Everyone Else
You become tired of always feeling tired.
Non-sufferers can’t grasp that concept; they either think you’re lucky or you’re full of crap and wish you would stop faking it.
Personally, I feel like everywhere I go I need a sign on my forehead stating “I have narcolepsy!” just so people will stop giving judgmental looks. I want to smack every person that says “I wish I could sleep all day like you” and those who think I enjoy having narcolepsy, like it’s some kind of super power.
No one enjoys having narcolepsy.
The “Google Experts.” They’re pointing At You Too
You try telling people about your condition and some are understanding while others see it as an excuse. Since you don’t have SSD it can’t be as bad as you’re making it out to be.
“If you don’t think about sleep or being tired, then you won’t be” it’s just “all in your head.”. “Have you tried going to bed earlier?”
Funny how everyone you talk to suddenly becomes an expert on your condition? They’ve read an article, watched a fictional film, glanced at WebMD, and may have even stayed at a Holiday Inn! Now, they believe they ARE an MD and can diagnose you!
Hate is a harsh word, but I really dislike those google experts.
In the End, We’re All Just Standing In a Circle Pointing At Each Other