How has your life been impacted by narcolepsy?

Narcolepsy has affected me in my relationships, my job, being a new mom, and being able to be involved with other people. At times, employers have thought that I’m “lazy” or not following my job responsibilities when I was devastatingly tired. With my son, I would get so exhausted during the day and couldn’t keep up with his energy; I would just turn the TV on so that I could lay on the couch and get my energy back up. I feel guilty because now he has a speech delay and I wonder if it’s my fault because I’m so tired.

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

People need to understand that narcolepsy can consume your life. Sometimes, we [people with narcolepsy] are so exhausted from trying to feel better that we just need to sleep and be understood. So many people in my life don’t know how much I struggle on a daily basis with narcolepsy and I find myself being judged and feeling worse about myself. Yes, we can go about our lives with medication but we have to then ask how this treatment affects our chances to have children and how effective it is long-term? Some of us do HAVE to be on medication to function but we want a family so badly that we either have to sacrifice the chance of a family or risk staying on medications so we can just get through the day and hope that the medications do not affect us or our little ones.

Have you faced barriers to care?

The barriers I have faced are more on the side of having resources and support around me—people who understand and know what I’m going through. No one really understands the seriousness of what I face. If they know about my diagnosis, they don’t ask about it or don’t know how to react. Doctors did a sleep study and diagnosed me with narcolepsy but I did not get educated on my diagnosis and I feel that is the biggest barrier of all. What good is a diagnosis if we don’t fully understand it and know where to go to ask questions? The emotional toll it has taken on me (especially as a new parent) I feel that there needs to be a group for new parents who have narcolepsy so we can get extra support and resources for our kids. I may not have a lot of energy but I still want to make sure he gets everything he needs.

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

Narcolepsy is one of the hardest things I have ever faced and I have faced a lot in my life. I often remind myself that if I can push through and do my best, alongside those who don’t have narcolepsy, then I’m doing okay. Even if I can’t make it through the whole day but I give it my all, I don’t see this as something that makes me weak. Instead, I think it’s pretty amazing that I’m taking on something that many others don’t face and getting up and doing it again.