15 replies to this topic

[tabster1]

Mine are completely ignorant. My dad doesn't even believe my doctor, and says I'm making myself think I have it. It is so frustrating, because he thinks I'm just lazy and if I just "tried harder" I could stay awake.

[Lucestrife]

Mine are completely ignorant. My dad doesn't even believe my doctor, and says I'm making myself think I have it. It is so frustrating, because he thinks I'm just lazy and if I just "tried harder" I could stay awake.

When I was diagnosed as a Celiac my parents put gluten in my food without my knowledge to "prove" that I was making things up. Some people are messed up and selfish. The best thing that you can do, in my opinion, is distance yourself as much as you can and seek out people to spend time with who are more sane and caring. This course of action has the added bonus of making it clear to the offending party what they risk by being such an uncaring jerk.

[jujufish]

at first my parents openly mocked me for answering "yes" that i " felt like i would drop what was in my hands when laughing" and said other malicious things about N to me. they have since confessed to forgetting that i have N completely and only rember when i try to talk to them about what im going to do when i try to get my drivers license. what baffles me is that my mom continues to have me take my medication but makes no effort to get into contact with the sleep specialist and says that "its my dads problem" but i can never locate my dad due to his job. i

[NetiNeti]

I think mine too, I just dont know to what extent they understand how it affects my life.

[sweetsurrender]

My parents have been very supportive. I don't think they quite understand how I feel (how could they?). My mom said that I might look into a job like the at home call center she does so I don't get tired out standing and walking all day. I'm learning to just appreciate the concern and her trying to be helpful even if she doesn't quite get it right.

This is all very new to us all.

[Enginerd]

In a word, no. My mom has suggested I work a desk job if I'm "so tired all of the time", and my Dad thinks I was misdiagnosed simply because my sleep studies have had "other results" in the past (mild sleep apnea and idiopathic hypersomnia). Even explaining that a desk job might worsen the urge to sleep, and that a past diagnosis of idiopathic hypersomnia isn't negated by a diagnosis of narcolepsy hasn't helped either of my parents accept that I have this disease and/or understand what I'm going through. I'm not sure they ever will, either.

[novacat]

My parents are very good about it, they are very encouraging to me and are always looking out for my well being. They saw the change narcolepsy caused in my life and in my body, and they know its a struggle for me, but they keep me positive and keep me praying for good days!

[Timber]

My parents take it quite seriously. My father also suffers from narcolepsy so, I have someone to talk to about it.
My older brother thinks that I am faking it and just overplaying whatever symptoms that I might have.

[Megssosleepy]

A DESK JOB IS THE WORST IDEA EVER!!!!

When I started mine was when I realized I had a problem and needed help! I used to work in the restaurant industry, I got to be up on my feet talking to people and moving around... the hours were also great... sleeping in the day up at night...

If you have any choice in the matter never ever settle for a boring Desk job, The only way I am handling mine is coming onto this site!!

As far as parents go, I would consider mine close to the worst no support, no sympathy, call me a lazy bum when I need to go to bed at a certain time, change the subject if I say anything, laughed when I fell down the last few steps of stairs when my brother scared me (not on purpose). Some days I am fighting a sleep attack most of my drive home from work... I get home and let it take over me on the couch... just a few minutes and then I can function again... how can they be rude to me about that?

I have met some amazing people on the NN, and I find that this is the only way I will ever get support, understanding, and suggestions to do things better. Its hard to be strong on your own... when the people who should be in your corner "forget" that we are indeed different and need a different lifestyle.

Anyhow I feel your pain, and those of you who do not have this problem should do something special for your loved ones, and truly thank them for their support... make sure they know you appreciate them!!!!

[DeathRabbit]

My parents take it quite seriously. My father also suffers from narcolepsy so, I have someone to talk to about it.
My older brother thinks that I am faking it and just overplaying whatever symptoms that I might have.

Brother's being skeptical seems to be a recurring theme. I think it's because you shared so many experiences and so much DNA that they figure, "Well I'm ok, so I don't know what the hell his problem is?"

[Hank]

My parents take it quite seriously. My father also suffers from narcolepsy so, I have someone to talk to about it.
My older brother thinks that I am faking it and just overplaying whatever symptoms that I might have.

I admire your father. It sounds like he has raised a great son. I am interested to know how your N was first detected and how your father responded.


I am a father and recently diagnosed with N after living with it since childhood. Our three children are 12, 12 and 8. I have been relieved that none of our children have displayed symptoms.

Not to hit the panic button, but this morning one of my daughters (identical twins) went back to sleep after I woke her up. She has been having a hard time getting to sleep and then hard to wake up, but still gets 9 hrs/ night. I asked her if she dreamed when she went back to sleep and she said yes, but couldn't remember what it was about- just random.

So, I am curious and will watch closely and learn as much as I can.

Any comments would be helpful from your experience. Thanks.

[Timber]

Brother's being skeptical seems to be a recurring theme. I think it's because you shared so many experiences and so much DNA that they figure, "Well I'm ok, so I don't know what the hell his problem is?"

I see where you're coming from and agree with you. He is also the complete opposite of me. He joined the military at eighteen and has served several tours in Iraq. His idea of being disabled is you lost a limb in a firefight. Otherwise, you have to tough it out. We ceased speaking about it because it was beginning to put a wedge between us. The cataplexy he flat out denies existing at all. He feels it is literally impossible.

I admire your father. It sounds like he has raised a great son. I am interested to know how your N was first detected and how your father responded.


I am a father and recently diagnosed with N after living with it since childhood. Our three children are 12, 12 and 8. I have been relieved that none of our children have displayed symptoms.

Not to hit the panic button, but this morning one of my daughters (identical twins) went back to sleep after I woke her up. She has been having a hard time getting to sleep and then hard to wake up, but still gets 9 hrs/ night. I asked her if she dreamed when she went back to sleep and she said yes, but couldn't remember what it was about- just random.

So, I am curious and will watch closely and learn as much as I can.

Any comments would be helpful from your experience. Thanks.

Well, looking back, I think that I may have actually suffered quite a bit from it even as a child. I slept everywhere, all of the time. It has been a running joke in my family that I can fall asleep in a two minute drive to the gas station. My father didn't even mention his narcolepsy to me until I had my confirmed diagnosis. Him and I are very alike in the sense that we thrive in structured environments. We both have our days planned out down to the minute. I think this trait has helped us both adjust.

In regards to how it was first detected, my group of friends at college would take pictures of me sleeping everywhere and post them on facebook. It just became a joke amongst everyone that I sleep everywhere. Then someone mentioned that I may actually have a serious condition and should check it out. I looked into it and asked for a referral to have a sleep study done. My father responded by explaining that he has it too and that was something we were actually able to bond over. We discuss all the symptoms and it is nice knowing that my own father understands.

I can see how that would be a red flag in regards to your daughter. If I had children I would certainly be watching vigilantly for any signs of narcolepsy.

[Kayra]

Brother's being skeptical seems to be a recurring theme. I think it's because you shared so many experiences and so much DNA that they figure, "Well I'm ok, so I don't know what the hell his problem is?"

My brother is also skeptical which is really freaking annoying. "they're quacks, you're fine" It's pretty frustrating.

[Timber]

My brother is also skeptical which is really freaking annoying. "they're quacks, you're fine" It's pretty frustrating.

Completely understandable. It can be very difficult to sway their opinion, even with the overwhelming evidence in your favor. I feel that to make my brother believe me I will end up having to have an attack in front of him when I visit my family for the fall break.

[gutterpunkprincess]

My mom is very understanding. Even before I was diagnosed, my whole life pretty much, my mom has been really accepting of me and my excessive need to sleep. My mom has some weird disorders too so I guess it's easier for her to empathize with me.

My dad, on the other hand.. I remember living with him for some period of time when I was a young teenager and fighting with him constantly because he would come in to wake me up for school and I'd be having sleep paralysis or some kind of hallucination and he would either pour water on me or just grab me and throw me out of bed.. Not like.. to injure me.. but just to physically wake me up. It never occurred to him that there might actually be something wrong with me based on the fact that I went to bed around 5 pm every night and was impossible to wake up 13 hours later.
Just this past week I spent a couple days with my dad and he basically just made fun of me the whole time, and attempted to deprive me of sleep whenever possible.. And he said some b.s. about how he thinks he has narcolepsy too.. He does not have narcolepsy. He is an alcoholic. I think anyone would pass out if they drank as much as he does.
Whatever. I'm an adult now. And there's a reason I see my dad maybe once a year.

[DeathRabbit]

My mom is very understanding. Even before I was diagnosed, my whole life pretty much, my mom has been really accepting of me and my excessive need to sleep. My mom has some weird disorders too so I guess it's easier for her to empathize with me.

My dad, on the other hand.. I remember living with him for some period of time when I was a young teenager and fighting with him constantly because he would come in to wake me up for school and I'd be having sleep paralysis or some kind of hallucination and he would either pour water on me or just grab me and throw me out of bed.. Not like.. to injure me.. but just to physically wake me up. It never occurred to him that there might actually be something wrong with me based on the fact that I went to bed around 5 pm every night and was impossible to wake up 13 hours later.
Just this past week I spent a couple days with my dad and he basically just made fun of me the whole time, and attempted to deprive me of sleep whenever possible.. And he said some b.s. about how he thinks he has narcolepsy too.. He does not have narcolepsy. He is an alcoholic. I think anyone would pass out if they drank as much as he does.
Whatever. I'm an adult now. And there's a reason I see my dad maybe once a year.

Man, sorry your Dad is acting like a raging bag of douches. Yeah, and I've said it before myself, it is so annoying whenever you go to try to explain N to someone and they're like "Hey, I get that too sometimes!" I know they mean well sometimes, but it still makes me want to give them a spinal tap and suck out all their orexin and see how they like me then.