Addressing Narcolepsy Misconceptions
What misconceptions about narcolepsy have you had to address with your family and friends? How did you handle it? Share below!
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)
A few things, justifying the amount of medication I take every day just to maintain some semblance of alertness, being accused of lying about forgetfulness, and getting raked over the coals for having time to take a nap but not finishing some chore. It takes the air right out of me. I have given up trying to explain what living with Narcolepsy is like. I've used literature, medical journals, even sleep professionals as resources and nothing has worked. It seems that when someone gets something in their head, dynamite can't blow it out.
I wish you had more empathy and support,
. Unfortunately, you are not alone. Narcolespy is an invisible illness and to many people have trouble accepting and understanding illness that come with no visible evidence. I am glad you found this community though and I hope it helps. Do you know anyone else with narcolepsy aside from the people here? Here is an article from one of our advocates about her experiences with in-person support: https://narcolepsy.sleep-disorders.net/living/support-moving. Sending the best of all wishes your way. - Lori (Team Member)
People say they understand I have no control on when I am awake and when I am asleep, until it impacts them and then they say that there must be something I'm not doing...like I want this life!
RIGHT? I've had people say this to me as well. It's so frustrating when we are obviously doing everything in our control to try to live our lives with this disease. I've lost so many friends due to their ableism and inability (or refusal) to understand the extent of my disability. I've had people push me past my physical limits, then act shocked when I end up having sleep attacks in public because of it. I am trying to advocate better for myself now, but it is hard work. I discuss this topic in my article here: https://narcolepsy.sleep-disorders.net/living/when-friends-understand I'm sure you can relate. You are not alone in this, even though it may feel like it. I promise that! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
