15 replies to this topic

[greatbig47]

"What do I have to do to get my family/friends to understand
or to at least accept my narcolepsy? It's a question we've
each asked and hear frequently from newly diagnosed PWN.
There are no easy answers. It's work. You may need to vary
your approach from one person to another. By its nature, a
letter allows you to say exactly what you wish in an organized
fashion without distracting interruptions.
A sample follows.

 DearLovedOne.doc   24.5K   34 downloads
 DearLovedOne.pdf   18.78K   26 downloads
 DearLovedOne.txt   2.97K   8 downloads

Dear [Loved One]:

As you know, I was recently diagnosed with narcolepsy. I always knew the sleepiness and
other symptoms I've been experiencing were beyond my control. Now I have a name for
this condition and understand why will power alone couldn't possibly help me overcome
the symptoms.

Narcolepsy is an auto-immune disease in which specific brain cells are destroyed. These
cells produce brain chemicals that are essential for keeping people and even animals awake during their day. Without it, I have about as much chance of fighting daytime sleepiness on my own as others would have staying awake under general anesthesia.

There is no cure for narcolepsy but fortunately there are treatments and lifestyle changes
that can significantly relieve the symptoms. I'm told no two people respond to medication exactly the same so I continue to work with my sleep physician to find the best medications and dosing for me. I take naps to head off sleepiness and sometimes need flexibility in order to manage unpredictable sleepiness. I don't want to be held back by narcolepsy. I want to live every day with a "can-do" outlook.

I am thankful for the many people in my life that have accepted my narcolepsy and have
even read up on what it's all about on the Internet. (Reliable sources of information include the web sites of Narcolepsy Network and Stanford's Center for Narcolepsy). It means so much to me that people close to me to understand if I must interrupt an activity to take a nap or decline an invitation because I need to get a full night's sleep to function well.

A few people have had a difficult time accepting my narcolepsy. I recognize that some were fair-weather friends. I've taken time to educate all of my family members and valued friends. Still, one insists narcolepsy is not a real disorder when there is a wealth of medical evidence that proves otherwise. Another is in denial because it's easier than facing the perceived shame, guilt and/or disappointment that I am not perfect. Another seems afraid of and uneasy with the unknown. I have led them all to reliable information but each gets to choose how they react. It saddens me greatly to be at odds with loved ones, particularly when I realize that, for my own well-being and that of those who depend on me, these people that I've cherished who don't accept my narcolepsy will eventually fade from my life.

Managing narcolepsy means eliminating as much stress and negativity as possible. I must choose wisely how I spend my time to make the most of the quality I do have. I function best in the midst of understanding, emotionally supportive, positive people. I am learning to be my own best advocate and to maintain a high level of self-esteem.

Despite the limits narcolepsy may impose on me it is only one aspect of my being. First and foremost, I am a person, unique, with much still to offer and a long, full life ahead. I want to continue sharing the journey with all of my family members and friends. I hope each one chooses to come along!

Love,

[Mike M]

Stu,

Awesome idea and great letter. I hope many people choose to use this approach. I also want to remind folks that, as the letter states, some people will still choose to disregard the reality of the disease. Sadly, there is nothing that we can do about those people. It is a loss, but it is not our fault. Thanks for doing this, Stu. You are always incredible!

[Lovemyhusband]

OMG Stu...You made me cry. I would have loved to have this letter when Andre was Dx. It says everything!!! The things that I get overly passionate about and have a hard time communicating. I think this is even therapeutic for people who choose to support a PWN. Thanks for another eye opening moment.

Would you mind if I used this letter for another dx for my son? He was dx with OCD about 10 months ago and if I changed it to fit that condition it would still work. If not, thats OK.

Clara

[greatbig47]

Clara,

You KNOW I'd be smiling a little harder if I could honestly claim the words and idea. That title goes to Sharon Smith, Narcolepsy Network's VP. Please feel free to let her know the impact. I know she'd appreciate it!

Sharon would also be the one to ask permission to use it.

Great seeing you around!!!!

-Stu

[sleepless sleeper]

You're absolutely right, cowgrl. In my case, I don't think that the letter would have helped, but it's awesome that someone took the time to create these letters. Thanks for posting them, gb47. Hopefully others will receive some benefit from them.

[Sleepless in Ohio]

Hi,

Okay, I know this is an old thread. But I have to ask if any knows why everyone's first response is denial? Typical conversation: "Boy your head was sure drooping in that meeting today, up partying last night?" me:" No, I have narcolepsy, in situations like that I can't help it." "I have sleep attacks." Them:"What? narcolepsy? Oh you don't have that!" "I've never seen you plant your face in your lunch."

It makes me angry to have to convince someone I have an illness I'd rather not admit I have at all! Does this happen to everyone? Or am I just lucky enough to have rude co-workers?

[Niki V.]

Sleepless in Ohio,

The sad thing is, I work in a Dr's office and I still don't get the understanding that you would expect from medical professionals. I still get the cut of the eyes when I get to work right on time in the morning and not early like others...but I am there on time!!!! And I get the dirty looks when I even mention the word Narcolepsy...I feel like a outcast and it makes my life very hard. I have always been a person that pushes myself and never lets anyone know that something is wrong with me and then I crash at home...well after being diagnosed things got worse for me. One co-worker that I work with as a team, now does as little as possible and I am working twice as hard at work and I don't know how long I can keep this up!!!!

Why do people have to treat us so badly...or anyone that has any kind of disease, illness or handicap? You would think the medical field would be the most understanding but it is not....



P.S. And when I was talking about getting to work on time I meant, we open at 8am and I get the before the doors open and the one co-worker that usually gives me the dirty looks only gets there 5-10 minutes before me!!!! A lot of difference!!!!!

[Asleeper]

Some coworkers just like to think they are better than others and have to look hard for and reason to do so. It may have nothing to do with your narcolepsy. I worked at one place once where they teased me for eating yogurt for lunch, smoking cigars (back when you could do that at work)'and for only having one bottle of beer after work! Try not to worry about what they think. Ask your boss what time you are expected to be at work, and be there. It sounds like you are in control enough of your morning schedule to do that.
Asleeper

[TiredAgain]

I get that all of the time, or they will say you've never fallen asleep when I was talking to you. Then they usually ask what my symptoms are, and everyone proceeds to add in how tired they are all of the time. So I say Americans are sleep deprived and then I say 50% (not sure if this is true) of people with Narcolepsy never get diagnosed so maybe you have it. Then their tune changes and they start saying no they just need to get more sleep at night etc..

I went to see an Infectious Disease Dr. to review some blood work and he sent me to an RA Dr and when I told then I had N they both questioned me. They both asked who diagnosed it and if I had done a sleep study. After the first Dr visit I decided to bring my test results with me. So I'm think how are people supposed to understand or believe when some Dr's don't even believe.

[Sleepless in Ohio]

I blame TV and movies.

If there is a character with narcolepsy, its always extreme. The actor or actress is talking and having a good time, then they plant they're face in a bowl of soup.

Now I have gone out doing many things, but I have never went soup diving. And I do my best to not crash at work, although I do from time to time.

D

[3:33AM]

I blame TV and movies.

If there is a character with narcolepsy, its always extreme. The actor or actress is talking and having a good time, then they plant they're face in a bowl of soup.

Now I have gone out doing many things, but I have never went soup diving. And I do my best to not crash at work, although I do from time to time.

D

Thank you so much for this! It would be great if there was one telling people about the symptoms and characteristics of people with narcolepsy. That way people could understand the things about me that are related to my narcolepsy and understand that some things I just cannot change about myself. I feel as if people think I'm bored with them or that they're not interesting enough for me to pay attention to them...or that I'm just lazy. Everyone always says, 'Don't worry about what other people think', but if they were in the same position, they would worry. You can see it in people's eyes. I don't want to use my narcolepsy as an excuse for anything and I try not to tell very many people at all. I guess what bothers me the most is that some of my friends and family think they know what narcolepsy is. I wish they would care enough to read a little bit about it. It's not just about dozing off - it's so much more. Believe me, if I could change, I would.

[Enginerd]

Thank you so much for this! It would be great if there was one telling people about the symptoms and characteristics of people with narcolepsy. That way people could understand the things about me that are related to my narcolepsy and understand that some things I just cannot change about myself. I feel as if people think I'm bored with them or that they're not interesting enough for me to pay attention to them...or that I'm just lazy. Everyone always says, 'Don't worry about what other people think', but if they were in the same position, they would worry. You can see it in people's eyes. I don't want to use my narcolepsy as an excuse for anything and I try not to tell very many people at all. I guess what bothers me the most is that some of my friends and family think they know what narcolepsy is. I wish they would care enough to read a little bit about it. It's not just about dozing off - it's so much more. Believe me, if I could change, I would.

I like your username! I used to meet my grad school friends in a train station for coffee at exactly that time some nights when I lived in the city. I never realized the reason I was so awake at night was likely insomnia due to narcolepsy, but it made for some good memories.....

[3:33AM]

I like your username! I used to meet my grad school friends in a train station for coffee at exactly that time some nights when I lived in the city. I never realized the reason I was so awake at night was likely insomnia due to narcolepsy, but it made for some good memories.....

Thanks! I've had this weird "time coincidence" for years now. When I wake up in the middle of the night, most of the time it is exactly 3:33 am. If it's not 3:33 on the nose, it's 3:32 and I see the clock change to 3:33. It's no exaggeration and I've tried to find answers to this for a long time. People say it's my "body clock" or that I'm clock watching, but I'm not alone. I had no idea there were so many people who experience this. I'm sure there's a topic out here somewhere for this...I just haven't looked yet.

[Enginerd]

Thanks! I've had this weird "time coincidence" for years now. When I wake up in the middle of the night, most of the time it is exactly 3:33 am. If it's not 3:33 on the nose, it's 3:32 and I see the clock change to 3:33. It's no exaggeration and I've tried to find answers to this for a long time. People say it's my "body clock" or that I'm clock watching, but I'm not alone. I had no idea there were so many people who experience this. I'm sure there's a topic out here somewhere for this...I just haven't looked yet.

It was rather strange for us at first, since we didn't plan when we would meet, but the huge digital clock in main hall would always read 3:33AM when we waltzed into the train station! After we noticed that happening a few times, we decided to make that our crazy meeting time. I realize it sounds like a movie, but really, it was just a few nerdy grad students trying to take a break from studying differential equations (and clearly failing to escape numbers entirely).

I've had a lot of weird coincidences when it comes to 3's and 7's, though. For the longest time, anytime I'd look at a clock, it'd be 4:37, or 12:33, or 7:13, or I'd order pizza and be number "77". My friends even agreed with me once I pointed out a bunch of the occurrences, so I knew I wasn't crazy. Then I think I became too tired to pay attention, and I haven't had any numbers stalking me since. I actually feel a tad bit nuts since I'm not a superstitious person at all...but our biological clocks and minds sure are capable of some interesting stuff.

[Enginerd]

I blame TV and movies.

If there is a character with narcolepsy, its always extreme. The actor or actress is talking and having a good time, then they plant they're face in a bowl of soup.

Now I have gone out doing many things, but I have never went soup diving. And I do my best to not crash at work, although I do from time to time.

D

This is exactly the reason I never considered I could've had it up until a few months before my diagnosis, and the reason my parents still think I don't have it! Stupid Hollywood.

[Megssosleepy]

Thanks! I've had this weird "time coincidence" for years now. When I wake up in the middle of the night, most of the time it is exactly 3:33 am. If it's not 3:33 on the nose, it's 3:32 and I see the clock change to 3:33. It's no exaggeration and I've tried to find answers to this for a long time. People say it's my "body clock" or that I'm clock watching, but I'm not alone. I had no idea there were so many people who experience this. I'm sure there's a topic out here somewhere for this...I just haven't looked yet.

I just read about this, its called the second sleep. Way back in the day before electricity people would wake for about an hour during the middle of the night... look up second sleep. I find now that I am on Xyrem I wake at exactly the same time on the dot every night... its creepy lol