How has your life been impacted by narcolepsy?

I developed narcolepsy in the Spring of 2014, the same month that I graduated college. I remember missing my last accounting final because I couldn’t remember which day it was on. My days were getting mixed up and I knew something was wrong with my brain. Luckily my professor allowed me to make up the test at a later time and I was beyond grateful. I had so many hopes and dreams of being a CPA but I had to put them aside because of narcolepsy. It took me a few years to grieve over what happened to me. I had many different therapy sessions, practiced meditation, and even prayed for my brain to heal. I finally found a place of contentment once I accepted the new me living with narcolepsy. I learned that as much as we plan our life it doesn’t go the way we anticipate but it doesn’t mean we can’t live a happy life. I’m now a stay at home mom with two children. I have way less stress than I did before narcolepsy. I had to slow my life down and appreciate the little things that I used to not notice. I don’t take my awake time for granted anymore and I try to teach others about the importance of sleep.

What is one thing you’d like people to know about narcolepsy and the challenges you’ve faced?

The struggle I face with narcolepsy is that I push myself too hard sometimes. I forget I have it from time to time which leads others to expect more out of me than I am able to give. When I am not in a sleep attack or having cataplexy I feel completely normal but then I make too many commitments and am unable to follow through with them. I constantly feel like I let people down to the point where I don’t want to make commitments at all. Recently, I have had to tell myself that the good people in the world are understanding and those are the people I want in my life. They are not going to get mad if I am late to something or have to cancel because of my disorder. The people who make me feel bad about it don’t deserve to be in my life causing me stress because this is who I am and I cannot change that I have narcolepsy. Accepting that has really helped my self esteem.

What barriers have you faced along your narcolepsy journey?  

As a single mom I have had to ask family for help and I am very blessed that my parents and sisters help me daily. We have all found homes within a 5-minute drive because they know I am unable to drive for very long. I found a school for my kids within walking distance. I am very fortunate but I don’t know how I would be able to take care of my children without my family near by.

What lessons have you learned that could potentially help others with narcolepsy?

Narcolepsy negatively affects your self esteem because it impacts your social life, motivation, ability to drive, and so much more. The best advice I can give is when you are feeling down or sad just know things can change and they will get better. The bad feeling will not last forever and there are many places to get help to feel better.

Also, find someone to talk to with narcolepsy. It helps to talk to someone who knows what you are going through and how it feels!