How has your life been impacted by narcolepsy?

My life has so many challenges, good and unfavorable. I want to share more about how narcolepsy affects pregnant women and women on their cycles in ways that cannot be measured because of the hormonal changes. I have had people disqualify me as useful or valuable in dating. I have been afraid to apply for jobs because I did not think they would take my disorder into account. I have put others in harms way not knowing my physical and mental capacity.

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

Narcolepsy is real so do not discredit the experience that people go through.

Have you faced barriers to care?

Yes. For years I was unable to afford my medications. I applied for disability and the test that they had me take to qualify is not representative of those who have any type of sleeping disorder. My family and friends were in denial for a long time (some still are) so it can be very isolating when I need help to drive, or extra time to nap.

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

I have learned to set my own boundaries. Please speak up for yourself, advocate at your jobs and within your friend groups. Do not be ashamed to express how you are feeling. Take care of you.

What is one thing you’re proud of as a person who is affected by narcolepsy or idiopathic hypersomnia? 

I am proud to say that narcolepsy has taught me empathy in ways I would not have learned it if I had not experienced and lived it. I am proud that I can advocate for myself and others who live life atypically functioning.