Quantcast

Living with Narcolepsy

Why do people act weird when you tell them about narcolepsy

So newly diagnosed mother, active, pretty easy to talk to but when I post Anything about narcolepsy it’s really quiet in FB Land. Why is that? Why the stigma? I even posted some video pretty good one one of Dr. Raj he was so excellent at explaining it and was upbeat the whole time but not one comment, this is weird for me. Why are people who do not have narcolepsy so scared? Or now there is awkwardness even at family functions, if it that misunderstood so you post a video you hope friends family look at so the awkwardness goes away. I have been told to rebuke the diagnosis and then I gently reminded that Paul wrote of his afflictions, or you just get some sleep uh? I’m fine right now but thank you. ADD was so much easier. Sorry to vent I just am in shock that people are not at all aware of the condition then act really strange around you

2 Likes

People don’t understand it at all. All they know is what they’ve seen on tv, etc and believe that it’s so rare that no one they know could possibly have it. I only share my diagnosis with my family and close friends because they are the ones that see what this disease has done to me. I did have my old boss ask “what exactly causes it”? I did appreciate the question and the opportunity to explain Narcolepsy. But most people cannot relate and I think, are often afraid to ask questions. Or just think it’s an over - exaggerated tiredness.

1 Like

ignorance

Good questions/comments. I get the impression that most people can't comprehend it and think we should be able to battle through the sleepiness like everyone else. I have heard: yeah, I'm tired, too--I wish I could nap--20 minute naps are so refreshing, aren't they?, etc. Perhaps it's similar to some views on obesity. If an obese person just had enough willpower, they wouldn't be obese. We all have to eat and we all have to sleep; get control of yourself!

1 Like

I'm being redundant but chalk it up to ignorance. It is reasonably rare and not one of the hot health topics such as ADD of which we all know about due to numerous drug advertisements. I remember apologizing to the church pastor for repeatedly following asleep during his sermons but it was due to narcolepsy. His response to me was to slip out of the pew, go back and walk it off. If it was only that easy! This may be dating myself but a popular song during my college years was "Walk a Mile in My Shoes". Keep up the good fight and if one medication is not helping try another. We are all highly complicated and sometimes react differently to the same drug.

2 Likes

I wish I did not understand!
People give advice…drink more coffee,get sleep…wanting to fix.

Hello,

Your not alone in wanting people to understand you. Here we understand you! I think sometimes people are afraid of anything that they don't "know" about, there is a lot of misinformation.

Lastly for them to understand it fully they would have to understand enough to "feel" the pain. Most people choose not to feel pain and live in their own bubble.

You are also not alone in people wanting to "fix you". I think we all go through that.

I fall asleep in church and I'm not ashamed :-) Sometimes if I don't know the people next to me I might warn them that I have narcolepsy if I'm feeling funny that day and time.

It is a blessing, it just takes time to see it.

Take care,

Ranger

PS: This is me and I Like "me" - lol!

All good points, it is hard to understand unless you have experienced it yourself! I am happy to have found this site. Today has been a rough day, 4th day of Nuvigil and my brain fog is through the roof, I am trying my best to study and I am not able to comprehend what I am reading.

Just last night I thought about how am I going to survive the "I am tired too" and the looks and constant comments from family "you are doing so much better, you can stop your meds now" HELLLLLLLO it is because of the meds that I can actually get through a day... and then the best one..." don't believe the doctors they don't know what is going on and just need to write a name for your burnout".... at this point of my life I struggle with doctors not understanding family not believing and friends are nowhere to be seen ....yet I would like to take hands with all of you and lets sing a happy song today... my self talk changed from "I can not live like this anymore" to "am I able to respond in kindness to the fatigue" in that I find some resolve because to be response-able brings a sense of responsibility and in that I find courage. Be strong all ya sleeping beauties.

1 Like

I like that, respond in kindness to the fatigue. I will keep that in mind. As my diagnosis just happened even though I already knew I have been through so many emotions. I work have children who are in sports every night of the week, games on weekends and I am in school, which is one but is rigorous. I am completely overwhelmed and trying to find my balance because I deserve to be able to go to school and have a some what normal life. so generally it is after my children are in bed that I can study. which is probably not the best set up for me as I need my sleep. what I find ridiculous is the pushing of sleep doctors of Nuvigil and Provigil, my experience was not good, now I know for some it changes their life. I wish it was that way for me. I prayed it would be that way for me. I was seeing a NP at the sleep clinic who when I told her it caused confusion (to the point that I signed a sympathy card at work with Happy Birthday! Can you imagine how embarrassed I was?) she wanted to put me on xyrem. I am not really ready for that, I have two children teenage and pre teen and my husband is gone for 48 with his job. Not only is it expensive but what if I have a reaction or lord forbid my children get into it. her response was I needed to come see one of their physicians. I actually had to contact my psychiatrist to refill Adderall because I can not get into the sleep doctor for 2 weeks. Do these doctors not get it? I can not go 2 weeks with out medicine and do I not have the choice to not take xyrem? I would think given our condition they would be more sensitive. Its just unacceptable to me. I think I would be better of just continuing care with my psychiatrist.

Hello,

I decided when I was diagnosed with narcolepsy that I was not going to take drugs for my symptoms. The neurologist got very angry with me... But it is my decision to make. I manage without them and focus on good food, vitamins, supplements and of course getting the sleep that I need.

Take care,

Ranger

PS: At the same time they wanted me to be medicated for T2 diabetes. I ask my other doctor what else I could do? She said cut back on sugar, higher protein, complex carbs and walk 30 minutes everyday. I did that and the T2 diabetes went away and never had a problem since. I know it's not for everyone to go this way but it works for me.

Hi! I'm new here, just got my diagnosis yesterday, but I totally feel you! My sleep specialist was pretty certain that I had narcolepsy, especially since I have mild symptoms of cataplexy, so I've been bracing myself for this for a couple of months. I'm pretty much textbook, but when I tried to explain what was happening to people, I got such a negative response from some of my friends, and even family. My favorite was, "you should have your thyroid checked, that's way more likely than having narcolepsy." Except, you know, I just paid over $1000 for a sleep study, my doctor (who is a sleep specialist) is positive that this is what's going on, and I have had my thyroid checked about 5 times in the past 10 years when I couldn't figure out why I was tired all the time, and it always comes back normal. I have to admit, I was very relieved when the sleep study confirmed the diagnosis. I think because it is so rare, and people only know what they see in the movies, it's a shock when they meet someone who actually lives with it. Because I don't randomly fall asleep mid conversation or activity, people doubt the diagnosis. Hang in there and stay strong!

1 Like

Yes I agree and you will find people just don’t want to know about it or really care even family but you will go through a series of emotions and find your balance and forgive those close to you that aren’t “getting” it. Sometimes understanding comes from the one person you thought would least be supportive. My husband is not “getting” it and compares himself to me as if it’s a competition as to who is more tired or their are others who think if you just sleep more (you know as narcoleptic’s) it’s assumed if we are sleepy it’s our fault for staying up past 10 at night, like we are children. But we are adults who have children and sometimes it might be past 10. I have learned to stop explaining myself I do not have to prove to someone else how my body feels my only responsibility is the care of myself…

1 Like

Maybe if a person knows more than one person with narcolepsy they’ll finally look it up online :). Some people don’t need the details and are totally accepting. Others won’t get it just because I’m the one trying to explain … It does feel so good to relax and feel comfortable on this forum and “holding hands and singing a happy song” with all who “get it” is making me smile. I used to work at a daycare = there is a feeling of freedom and joy even adults can feel when they’re understood.

When I was in college, anytime I took a test, my N would hit so hard. And my instructors (at least the ignorant ones) would tell me to take a walk outside. I would too. I would walk and walk. But as soon as I sat down to finish the test, I'd be right back into my dream world. Honestly, now that I look back on it, it's incredible that I even finished college! Now I'm working full-time in my career and my workmates are the ones now telling me to "walk it off." They also still act like I'm making up my condition, because they don't actually see me fall asleep, or they don't see my C. Just the other day, I was explaining to one of my workmates that I was having an awful day, from the dream I had and how exhausted I was feeling. Her response was, "Oh, I hate it when that happens. I'm really tired too." They just don't get it, and until we can somehow make N more appealing to learn about, they won't, unless of course someone they love gets diagnosed.

Ranger2 said:

I'm being redundant but chalk it up to ignorance. It is reasonably rare and not one of the hot health topics such as ADD of which we all know about due to numerous drug advertisements. I remember apologizing to the church pastor for repeatedly following asleep during his sermons but it was due to narcolepsy. His response to me was to slip out of the pew, go back and walk it off. If it was only that easy! This may be dating myself but a popular song during my college years was "Walk a Mile in My Shoes". Keep up the good fight and if one medication is not helping try another. We are all highly complicated and sometimes react differently to the same drug.

1 Like

One of the problems is “Karens” who love to claim they have different invisible conditions just to get attention. They muddy the waters and make people less likely to believe. Just how many people “totally have a gluten allergy” and then chow down on the bread at Olive Garden?

Then there’s Hollywood that thinks narcolepsy is just soooooo funny and then misrepresents how it occurs. Of course, we got off lighter than Tourette’s sufferers.

How CAN we be taken seriously?