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When Do You Tell Someone New?

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#1 drago



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Posted 18 June 2009 - 10:05 PM

I was first dx'ed with Narcolepsy last November... I told people whenever because I was still getting used to it and stuff... and I wanted to talk about it.

But, ever since one of my closer friends and I fought over my sleep attacks (he claimed I had blamed our fight on a sleep attack, when I never actually did that - I actually didn't blame our fight on anything, it was just a fight...) I don't want to tell anyone about it unless I have to...

I ended up telling people recently (like, May) at random times - when it came up... but now I'm off meeting new people outside of work especially. And, I guess, when do you tell people about narcolepsy? And, moreover, why do you tell them?

I know there probably isn't a formula for this... but I wanted to hear other people's input on this...


#2 sleepless sleeper

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Posted 18 June 2009 - 10:16 PM

I always say that i will whenever. It doesn't need to be known at first, but I never adhere to that. Something ALWAYS shows up, and I will confess. In the long run, it seems to be the best thing for me.

#3 eww



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Posted 19 June 2009 - 02:13 PM

That's tricky. I think everyone's different, but I'll tell you what I do...

I have a bunch of friends that I've known for years and years that I haven't told. Mind you my "official" diagnosis came this February, but it was just a confirmation. I knew in November. Not long, but still... I haven't told them and I don't plan on telling them any time soon. They're not the kind of people who will be good about it and they know my idiosyncratic ways as it is. I've been falling asleep on some of those boys shoulders during parties since I was 17. I'm not going to lie about it, but I have to admit that I'm less than forthcoming. I wear a medical ID bracelet now and I "hide" it (wear hairbands and other bracelets or even just being conscious of the symbol part being down) when I see them. I take my meds with them there and until someone asks I'm not going to explain that either. A couple people in the group that I'm closest with know. I haven't told them to keep it a secret and if it comes up I'll come clean.

Pretty much same goes with my extended family. Two of my grandparents were very ill as I was going through diagnosis and I didn't want to add to the burden and stress everyone was already under. Plus, a few of them will be wicked with jokes and disbelieving. It's easier if they don't know. Again, I'm not lying and if it comes up I'll come out of my Sleep Disordered Closet. My excuse is that it's messy in here and it's gonna take time and attention to clean the place up. I might not be out for a while.

It's funny because the people I have intense history with are the ones I'm keeping it from. My immediate family (and their significant others), my brothers friends and a few close friends of mine know but other than that...

On the other hand I'm quite open about it with people I don't know or people that I've met recently. It intrigues them, I don't feel judged and it all seems to work. I don't introduce myself "Hi, I'm Erinn and I have Narcolepsy" because life isn't AA, and that would just be awkward. When it comes up (and it usually does because I nap like a demon) I explain. And I answer any questions they have openly and honestly.

So that's my take.

#4 Lais02



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Posted 20 June 2009 - 11:54 AM

I always want to tell people right away for some reason. I wish I didn't, but going through my head when I'm meeting people is the fact that they don't know and what if they think I'm weird, and maybe I should just tell them now and skip the part where they decide I'm too weird to talk to. Its all just crazy, but that's what I'm thinking.

I just started a new job, and I'm trying hard to not tell people right away if ever. I take Xyrem and am not at all sleepy like I used to be, so in reality I probably don't stick out at all as far as sleepiness goes. I'm so used to sticking out with all of my naps that I can't seem to convince myself that that is no longer the case.

I also like telling people, because then I'm educating people about N. The more educated people are, the better. smile.gif

#5 Mike M

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Posted 20 June 2009 - 12:40 PM

Like Lais02, I tend to inform people early in my acquaintance with them. I certainly do not wear a sign that says PWN on it, but I feel like my narcolepsy does impact who I am - in positive and negative ways. When it is a person who I have not seen in awhile, I often will say something about working part-time now, or about my medical struggles. Those comments then lead to a brief discussion about my diagnosis and narcolepsy itself. If I am meeting someone for the first time, I general do not reveal my narcolepsy unless there is a legitimate reason to do so. The only exception to that is my students. I teach high school English and believe that it is important to reveal my condition right away. My teaching is rarely impacted by my narcolepsy in a direct sense (no sleep attacks in school and I do not seem to have cataplexy), but certainly I occasionally miss a day of school and have many days when my energy ebbs significantly.

All of that said, I do not think there is a "right time" to inform others. I truly believe, as others have said, that each PWN needs to find her or his own approach. I do think that regardless of when you decide to tell another person, the burden is on the listener to accept it. Whether a friend is informed immediately or after months, she or he should care enough about the PWN to appreciate the information, rather than using it to judge the person or the friendship. I was deeply sorry to read about Drago's fight. It stinks that many people who claim to care about us truly are unwilling to accept some of the more difficult aspects of narcolepsy. We can't control our level of sleepiness - that is the basic fact of our condition.

Finally, I did want to add that I do think that if we can, we should all talk about our narcolepsy when the opportunity presents itself. By sharing our stories and realities, it does make narcolepsy more "real" for others. The more we can educate the world, the more understanding others will be. But, only do that when you are comfortable with the situation. No one should ever feel like she or he is forced to discuss this crazy condition.

#6 Marcianna



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Posted 20 June 2009 - 01:18 PM

it is very diffrent for all I would say.

I usually dont have to tell most people cuz living in a small town....lol...word gets around. but since my C is so particularly dangerous and so many people, even strangers have seen me in "interesting" positions on the floor...I am not surprised by that.

(Haha...one time I cut my thumb really bad and went to the hospital and was recognized by one of the nurses.... She said.. "hey! Are you the girl who has the drop seizures at the comedy club? What is that about?" LOL... I quit going to the comedy club after that .... should have known better anyway right? LOL!!!!)

but because I am not medicated and do tend to get hurt, I usually tell people right away, if I intend to hang out with them regularly.

But in my case.. word of mouth has done me in. I am kinda famous like that....

#7 stardust



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Posted 29 June 2009 - 01:41 PM

I have cataplexy too.. although not as bad now I'm on Xyrem. Yea..lol your right you might want to try to stay away until your cataplexy is under control.

I don't want to mislead you..I never had it where I would fall on the floor, though I wasn't far from getting to that point. I was always able to catch my self when it came to my legs. Now my neck and eyelid I never really had a chance. For me it didn't matter where I was whether in a restaurant, at home, or even at school.. my neck would give out to the point that my head would hit the desk, plate (one time with food in it), anything that was in its path. But you know what.. the Lord works! And in a year and a half he's taken me far from that state of no control to not having that must trouble. And He can do the same thing for each and everyone that belongs to this community.

Back to that topic at hand... I live in a small community too. Once I was diagnose I told some of my friends (like they could understand, hu) and some people at church but thatís it. Just about everyone I told had a false idea of what Narc. is which in a way made me feel uneasy tell them. I'm know some already thought I was weird in the first place but when I told them this they just didn't know what to think(because even though I explained

Drago, everybodyís different you know that. And not only that, but ever relationship is also different. I say it depends on what kind of relationship your talking about.

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