Tag! You’re It!

Remember pre-diagnosis? How badly that sucked? Remember just simply NOT knowing what in the freaking yellow was wrong with you? And how frustrating that was? It’s just so nice to finally have answers, even if they are answers we don’t want to hear. 

Since you have been diagnosed with Narcolepsy. How many other people who have never heard of it till meeting you, have gone to the doctor and found they had it too? Has anything like this happened to you? If it has, was it just chance? Or were you in hardcore advocate mode?

This has happened to me. I can credit myself with 5 confirmed Diagnosis’s. (And no, not all family either.) There are two on the horizon also as soon as they go to the freaking doctor! I really can’t count them though as I am still in suspicion mode. But I mention them and I will explain why in a bit.

There are those who are so glad they have met me, because they are so happy to have answers and are able to get treatment and be semi functional again. And there are those who wish they didn’t know about me, because when they got their Diagnosis too, suddenly their entire lives changed and they resent me for it. Such is the stigma of Narcolepsy. Then there are those who know me, suspect they have it and refuse to go get tested because they see my struggles and what I go through and how people treat me, and they don’t want that for themselves. They are clinging desperately to normal. Geez and I can’t blame them.
(But now that I have seen Cataplexy and have it myself and know what it is, there is no hiding that from me! I see you punk! You know I am talking to you little brat!)

Anyway, there is no moral of the story today. Just something that was on my mind. How having a diagnosis is a blessing and a curse. And as much as I love advocating and bringing more awareness to people, the nasty game of tag we play sometimes, is disheartening.

No one ever really wins.

And none of us like to be the one who tagged you and said… “IT”.


4 thoughts on “Tag! You’re It!

  1. This is a very important topic I actually hadn’t thought much about until you brought it up!

    I haven’t met too many people in person that I suspect have narcolepsy – although reading about a few “undiagnosable” illnesses in articles and books, I’ve often suspected narcolepsy and cataplexy.

    I’ve met lots of people who probably have sleep apnea (or know they have sleep apnea), but choose sleepiness over the current treatment options. I’m sympathetic, but wish people would put their health first more often.

    Thanks for bringing this important topic to light!

  2. I have diagnosed so many people because of my own misdiagnoses and from going so long being undiagnosed with thyroid and adrenal disease as well as inguinal hernias. It’s great to be able to save them from some of the pain that I had to suffer for years. Kinda wish someone could have done that for me though. But still grateful to help others.

  3. Andrea Egan says:

    It’s really fun to mess with people when they complain to you about being sooo tired, knowing full-well that you have a bonafide medical condition that makes you tired 24/7 (these are the type of people that remark that they must have narcolepsy too just because they are feeling sleepy at one given moment). I turn to them and say, “well you know that I have narcolepsy, right? Did I forget to mention that it’s contagious?” The look you get is priceless!

  4. marcianna says:

    Holy cow Andrea! that is priceless! I am going to have to try that one! lol!

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