If I Had the Perfect Support System
If I had the perfect support system, it would be almost a completely different world. No more explaining. No more apologizing. Everyone would understand and accept me for how I am.
Everyone around me would understand why I do things the way I do them, and I would never have to explain myself again. I could do something or everything that is best for me and not have to say why I am doing those things.
I would have friends and family members support what I do instead of telling me I can’t do something because I have narcolepsy.
My naps would not be an issue
My friends and family would know that I need to plan things around my naps and sleepiness instead of telling me just to nap after we do something. People in my life would know that I don’t choose when I nap and that I wish I didn’t have to nap daily.
I would not apologize for doing what is best for me
There would be no more apologizing for not being able to do something or for changing plans. If I have to back out of something that I planned, I wouldn’t have to apologize. And people would understand that it's me doing what is best for myself, not because I want to, but because I have to.
People wouldn’t try to make me feel bad or call me names because I can’t do something. People in my life would just know that I know what is best for me, and they would accept that. I wouldn’t have to apologize to anyone for falling asleep and not responding to a text message.
Taking the time to truly understand narcolepsy
In our 2020 Sleep Disorders In America survey, only 13 percent of survey respondents with narcolepsy strongly agree that their family and friends understand all they are going through.
I feel that someday I might have a better support system, but it will only happen if the people in my life do the work as I did. When I was first diagnosed, I had no idea what narcolepsy was and had no idea what my life would look like from then on.
I had to do the work to understand narcolepsy and learn more about the condition that was so new to me. I started by joining support groups on Facebook. I then took time for myself to get used to the medication and lifestyle changes I had to make.
Researching and accepting my condition
After I was finally managing my narcolepsy, I started to research the condition and see what organizations were out there. I reached out to other people and got involved. I even read a book, and I hate reading because it makes me so sleepy.
When I say that the people in my life have to do the work, I mean they need to do their own research. They need to believe me when I tell them why I have to change plans, and accept it. They have to accept my condition and know that it is never going away.
I am not ashamed of narcolepsy
Narcolepsy is a real thing, and it is nothing to be ashamed of. My friends and family would need to understand and not question when I tell them that I am living my life like this because I have to, not because I want to.
Although this would be my perfect support system, I know a lot of people with narcolepsy who I have talked to would say their perfect support system would look somewhat similar. What does your perfect support system look like? Does it look similar to mine or completely different?
The 2020 Sleep Disorders In America survey was conducted online from March through July 2020. Of the 2,198 people who completed the survey, 105 were narcolepsy respondents.
What is the hardest part of coping with narcolepsy?