How has your life been impacted by narcolepsy?

When my symptoms first began, I had no idea what was happening to me and it was terrifying. I would be doing something and this enormous weight would come down upon me and this dark veil would fall over everything. It was like being on a dark, deserted road at night, in the middle of nowhere, with no street lights, no moon, just the pitch-black closing in around me. I wanted so badly to find the light switch and turn it on so that the darkness and despair would vanish. No matter how hard I tried to pull myself up out of the fog, it always felt as if I was being pushed back under. The only way to make it stop was to succumb to the darkness. Let it overpower me and simply wait for it to relinquish its control. I longed for the light that I didn’t think would ever exist again. Things I had once been able to do were becoming more and more difficult. I never knew when that veil would begin to seep in and drag me under. I had always been able to find logic in things and for the first time in my life, I was at a loss. It seemed that what was once just being a little overly tired and liking to sleep, had down a complete U-turn. It was now bearing down upon me like a storm and attempting to wash me from the face of the Earth. No matter how hard I fought back against it, it just kept surging forward..

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

The most frustrating part of having been diagnosed and telling people is when someone tries to tell you they know what you are going through. Or they provide advice on how to fix things. I have been particularly frustrated by people who want to constantly tell me to “get some rest” and I will feel better tomorrow. As if that never occurred to me or anyone else living with narcolepsy. Narcolepsy does not mean you are lazy or unmotivated.

Have you faced barriers to care?

There is a real lack of understanding surrounding narcolepsy, even within the medical community. I remember being told by on Family Practitioner that I needed to exercise more, change my diet, set a regular sleep schedule, adhere to proper sleep hygiene, and work on resetting my internal clock. All things I knew wouldn’t fix me. When you know your body and that something is wrong, you know it to your very core. Finding someone who will listen and hear you is the most important part of getting a diagnosis. I had to travel 6 hours from home to find someone who would hear me. My regular neurologist had become so busy with his practice that I was forced to the see the PA, who did not listen or act concerned. I was told by her that this was “my new life and to get used to it”. I found that unacceptable. Not just because she is a medical professional, but in general this is not helpful. We must advocate for ourselves, persevere, and be aware. This is what will get us through!

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

I have learned that I am stronger than I give myself credit for. I have also learned to stop comparing myself to others. My situation is unique and what I am experiencing is not the same as anyone else. I have to trust in myself, listen to my body, take the time to rest when it is needed, and push through when I cannot. Every day is a struggle, but with a positive support system in my life, I know I will be successful and I will overcome this.

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

The one thing I refuse to do is to stop living. Some days the fog is not so heavy, and the swamp not so deep or difficult to trudge through and it seems easier – but then other days it seems impossible and I can hardly move. This mud, this fog, it is all in my brain. I know I must push through it to come out on the other side. Most of the time these struggles are invisible and hidden from those around me, but they are unrelenting. And yet I endure. It can feel discouraging and embarrassing when I fumble over my thoughts and lose my way in a conversation. I want to be the person I once was. The one I still feel like I am on the inside. Before every facet of life became so tough.