Newly Diagnosed: Welcome to the Club

A few weeks ago, I received a text from a friend I had met at a Narcolepsy Network Conference. When we first met, I was amazed at her commitment to raising her two children with narcolepsy. We have spoken off and on as she looked for perspective for her son. This time her message sent chills throughout my person.

Earlier that day she had received her diagnosis, type 2 narcolepsy. It was an honor to be included by her on that day; it was humbling to realize I don’t have all the answers.

Comfort in the form of love and support

When I was first diagnosed, my thoughts were all over the place. I recall reaching out to seemingly everyone I cared about. The feedback I received was never quite what I expected or felt I needed. In reality, there were no words to offer me comfort — love and support was what I required.

So, what could I say to offer comfort to someone else? There was only one answer — love and support. My hope is that the following lessons will shorten the search for acceptance.

Our narcolepsy code phrases

There are no secret handshakes I have learned, but there are a few code phrases: “Sleepiness is Not Laziness” and “Narcolepsy Not Alone.”

For me, the key to reaching acceptance was found in those phrases. Once I was able to comprehend “Sleepiness is not laziness” and internalize the significance I was on my way to acceptance.

Sleepiness is not laziness

Naps are a critical part of my treatment strategy. Before I could embrace the importance of napping, I had to recognize the benefits the naps provided. Living with narcolepsy means that I struggle with disrupted nighttime sleep, and this fact feeds my other symptoms.

The disrupted nighttime sleep leads to a REM deficit. This deficit causes my excessive daytime sleepiness and leads to increased emotional responses, which in turn triggers cataplexy.

It’s all connected, and a great way to overcome the REM deficit I experience during the day is through both scheduled and impromptu naps. Keeping a consistent schedule allows me to better recognize and anticipate my nap needs. I also never hesitate to embrace an unscheduled nap to circumvent the overwhelming sleepiness I call sleep attacks.

The naps help make my medication more effective. Naps also help make my exercise routine possible which leads to more energy throughout the day. Napping helps make my sleepiness more manageable. I have reprogrammed my thinking—naps are not a sign of laziness

Narcolepsy not alone

The other key phrase is "Narcolepsy Not Alone.” In addition to being the title of one of my favorite Project Sleep outreach campaigns, it has a deeper meaning as well. For me, the key to accepting life with narcolepsy was finding my peers.

In order to learn how to live with narcolepsy, I needed to meet others like me. Counseling was a key part of my mental health and critical to overcoming the grief of a changed future. It only took me part of the way. For me, I needed to reach out and add to my support network.

Social media support on Twitter and Instagram

To build my support network, I needed to reach out. I have found that when you reach out to a person with narcolepsy, you usually find support and encouragement. Social media has been a tremendous boost to finding others with my condition. I started on Twitter, looking for others. I built the foundation of my Twitter support through monthly #NChat. This connected me with some of the most important figures in the advocacy community.

From there I found a caring and nurturing environment on Instagram. My Instagram social support fills me every day with new contacts, friends, and ways to connect. It is my daily connection with my sleepy community and in turn, my daily connection living with narcolepsy.

Online support groups

Two years ago, I found the ingredient to my support I had been looking for: support groups through Wake Up Narcolepsy. Every week, twice a week, I join around 12 peers with narcolepsy or support members to people with narcolepsy. My Wednesday night groups added deep personal connections to my support. The groups are filled with other positive individuals dedicated to improving their lives while living with the condition or supporting someone who does.

There are some members who are newly diagnosed, some (like me) who have lived with narcolepsy for decades, and even a handful of people who have lived with narcolepsy for 30 to 40 years. On Saturdays, I have the honor of facilitating my own group. These are my people, the ones who helped me unlock the door to acceptance. They make up my family of choice, and they help me realize that I am “narcolepsy not alone.” The World’s Strongest Person having narcolepsy with cataplexy approved this message.

How do you find support for dealing with your narcolepsy? Join our community and share in the comments below.