Addressing Narcolepsy Misconceptions
What misconceptions about narcolepsy have you had to address with your family and friends? How did you handle it? Share below!
When someone tells me they are exhausted because of the many things they had dealt with in a short amount of time, are so tired they can’t even think, the trauma in their life has worn them down to their knees. I tell them, now imagine all of those things you just told me happening at the same time then multiply it by 10. That’s how I feel 24/7. I wasn’t diagnosed until 22 years ago. I’m 56 now. Only by the grace of God am I still alive because of all the car accidents and close calls I’ve in. I’ve been a struggling hairstylist for 38 years. I’m very good at what I do, but because of mostly being late to work or running late on clients and making them wait, I’ve lost so many clients over the years. I don’t always mention my narcolepsy to my clients but most of them that have stuck with me for many years know and give me some grace because of what I do with their hair. I’ve loved my job all these years, but it truly is emotionally and physically exhausting. Add that to a narcissist husband of 26 years, if the Lord called me home today, it would be the best day of my life. (Accept having 2 boys)!
Hi
. I wish you lived near me. I could use a good hairstylist! I'm glad you at least have a core of clients who understand. The fact that they are so loyal to you is evidence of your talent, for sure. I hope you can keep going until you are able to retire. Many people with narcolepsy find that the relaxed schedule of retirement makes it easier to cope. Hopefully, at that point, you'll be motivated to put up more of a fight if the Lord come calling. ☺️ - Lori (Team Member)
My soon to be ex husband has always been the worst at understanding my EDS or that I actually have narcolepsy. He’d say if I slept at night like everyone else, I wouldn’t be so sleepy all day. It still hurts me.
Hi
. Welcome to the community! I'm glad you found us. I wish your husband had been more understanding. I can see why it's so painful to have no support from the person who is supposed to love you most. I hope the pending divorce proves to be a healthy thing for you, even if it's difficult, and that you eventually find a life partner who truly deserves you. Have you been diagnosed long? Know that we are here for you whenever you need us. Warmly, Lori (Team Member)
Thank you.
My son says so what if you're sleepy, you don't need amphetamines
That must be so maddening,
. Do you think he might eventually come around and take the time to understand the impact of narcolepsy? Thinking of you and sending lots of gentle hugs your way. - Lori (Team Member)
My sister was diagnosed about five years before I was. We live about five hours from one another. I have actually being toying with the idea of starting an in-person support group. My sleep doctor has agreed to assist in any way she is able and my church has agreed to letting me use the facilities. I've been to a couple of webinars about peer-led groups and a friend/old boss who is an RN and wellness coach has agreed to help. I just need to start reaching out. Fortunately, my friends are way more supportive.
How awesome,
! It sounds like you have done a lot of work already. I hope you are able to pull in a good group of people. Please feel free to post in the forums section (https://narcolepsy.sleep-disorders.net/forums) if ever you have questions or issues you think the community can help you with. I would love to hear more once you get it up in running. - Lori (Team Member)
