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How Do Most Cope With Others Perception Of The Disabling Effects Of Narcolepsy?
I struggle with saying the truth to why I don't get certain things done because I feel as if people judge me when I say "I was to tired" as laziness. But I struggle even more with forgetfulness and how people perceive my struggles. "I forgot" is an unexcusable term in today's insensitive world. But brain fog will have you forget more than most expect.
I know how you feel I have trouble finding my words at time. I take medication twice daily but I really don't feel like it's helping anymore. I can still drive if I'm tired and have not taken my medication I've had people call in my car and license and I will get pulled over. So I make sure I take the medication. But try to explain to people is hard. But keep telling them the truth about what you have and that's the best thing that works for me
I struggle so much too but I have found that just saying I have a sleep disorder/narcolepsy isn’t enough as most seem to judge as just lazy still. I have begun to add that it means I have barely any of the hormone that is released when normal people sleep to feel awake and refreshed and that in turn affects my memory and concentration. If they still can’t understand after that then I just don’t waste my time or valuable energy and just say my brains still asleep while my body is awake… I tend to avoid most situations these days as it’s just easier and I don’t have the energy for them anymore.
I have trouble with finding my words as well. I just struggle with day to day tasks that most people can't always see that I'm struggling because I keep a positive attitude and face.
I have had Narcolepsy for almost 50 years. What I have noticed is that some phases of Narcolepsy come and go as you get older. So please hold on, this phase will pass. It may take some years and seem like forever, but it does get better.
@A MyNarcolepsyTeam Member for me I do find it can be both but omg , I have now completely lost track of how many times I try to say something, get tongue tied or stutter and make up words or jumble them, try to start again and the same happens! I only try about 3 times max now and just say “f**k it I quit!” Yet that sentence always comes out fine! It can be amusing but so damn frustrating too!
@A MyNarcolepsyTeam Member wow, well done on writing a book, I would love to read it but I dread to think how long it would ever take me to achieve this 😂
Anyone Know What The Social Security Disability People Think About Narcolepsy.
How To Convince My School Teachers, Principal And Other Staff That My Condition Is In Fact Real And Making My Daily Life Harder.
Would You Say You Have Good Days And Bad Days With Narcolepsy?
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