In 2012, Cat Thoma, a senior enrollment counselor at Colorado State University-Global Campus, was finally diagnosed with narcolepsy with cataplexy. Although her journey to the right diagnosis took time and resilience, Cat continued to thrive in the face of adversity. Not only did she earn a second master’s degree at CSU Global while working full-time and being a mother, but she also started advocating for other people with narcolepsy (PWN). Keep reading to learn more about this mysterious disorder, Cat’s journey to diagnosis, and how she overcame her symptoms to reach her goals.   
living with narcolepsy
 Millions of people are affected by diagnoses everyday around the world. Whether it be a life-threatening illness, a manageable disorder, or even the common cold. While some diagnoses can mean the end of something, others can be seen as the beginning. For me, my diagnosis was narcolepsy with cataplexy.

The Difficulty of Diagnosis

For me, it wasn’t necessarily sleep difficulty getting me down, it was my instability. I was falling down and injuring myself involuntarily, and that was what stumped doctors. I saw over 10 different specialists including neurologists, urologists, rheumatologists, orthopedic surgeons, and even went as far as paying for a concierge doctor. As each doctor attempted to treat my symptoms, rather than provide a diagnosis, I was put on more and more meds. At one point I was on over 10 different medications daily in an effort to curb symptoms. Finally in 2012, I was diagnosed with narcolepsy and cataplexy at UCLA Medical Center.

What is Narcolepsy?

Narcolepsy impacts about 1 in every 2,000 people here in the United States, or approximately 3 million worldwide. Symptoms can vary greatly and are not the same from person to person. That is one of many challenges medical professionals face when trying to diagnose symptoms.

Narcolepsy impacts about 1 in every 2,000 people here in the United States, or approximately 3 million worldwide.

Narcolepsy is a sleep disorder where the body is unable to correctly regulate sleep cycles, specifically the rapid eye movement (REM) cycle. Symptoms include, but aren’t limited to the following:
  • Disrupted nighttime sleep.
  • Excessive daytime sleepiness.
  • Sleep attacks.
  • Sleep paralysis.
  • Nighttime hallucinations.
  • Cataplexy.
About half of all patients with narcolepsy also have a subset diagnosis of cataplexy. Cataplexy is specific to narcolepsy and more research is required to fully understand the combination. Currently, cataplexy is defined as full to partial collapse of the body during waking hours due to an emotional reaction. The collapse is thought to be caused by the brain believing it is having a dream in REM cycle, and responding by paralyzing the body to mimic sleep. Movies like Deuce Bigalow: Male Gigolo and Moulin Rouge misrepresent narcolepsy, thereby contributing to myths and misdiagnosis. Often times I have to explain narcolepsy with cataplexy to doctors because even they don’t have a grasp on the potential scope of the disorder.

Moving Forward

Having a diagnosis gave me a sense of relief. I finally had a name for my mysterious symptoms which provided a pathway forward for treatment and gave me an idea of what my life would look like. Since my diagnosis I take medications to help me sleep solidly at night, as well as medications to keep me awake during the day. More than anything, learning what was actually going on inside my body made it easier to function even without medication. When something happens - whether I have a bad night’s sleep or fall unexpectedly - at least I know the reason for it and can take the appropriate steps to power through. In September 2012 I was able to get back to work and begin my now five year career with Colorado State University-Global Campus. As an enrollment counselor I helped students navigate their path toward achieving their educational goals. It was great to be in the role of helping others after I had received so much help over the previous year. My position made a huge difference in my self-worth and physical well-being. CSU Global was the perfect fit for me. Not only because I was able to help people reach their goals, but because I could take advantage of the tuition reimbursement benefit. With the help of CSU Global’s 100% online format, I was able to earn my master of science in organizational leadership, in February 2016.

Being online made all the difference for me. I needed the flexibility to study when I was alert and engaged, instead of forcing myself into a classroom at set times when I physically wasn’t feeling well.

Being online made all the difference for me. I needed the flexibility to study when I was alert and engaged, instead of forcing myself into a classroom at set times when I physically wasn’t feeling well. Of course with a full-time job and being a full-time mom, a traditional brick-and-mortar wasn’t in the cards anyway, but CSU Global also provided the accommodations I needed. I took advantage of the disability services provided to help me when I needed an extended deadline, or a different formatted assignment or course material. In addition to getting back to work and school, my diagnosis also spurred me to do whatever I could to help other people deal with what I went through. I wanted to be a resource for people to ask questions and share their story. I had been so alone in my journey so I wanted to use that experience to be a voice, an advocate, and an educator for the people and the disorder. So I got involved in the community…

Joining the Narcolepsy Community

The Narcolepsy Network is an amazing organization that I am so proud to be a part of. I joined shortly after being diagnosed and quickly wanted to get more involved. With a small staff and a lot of volunteers, the Narcolepsy Network helps people connect both nationally and internationally who are living with this crazy diagnosis. [caption id="attachment_3204" align="alignleft" width="248"]
Narcolepsy Network Conference 2017
Cat at the Narcolepsy Network Conference in 2016.[/caption] During the 2016 Narcolepsy Network Conference in October, I presented about #nchat: the monthly Twitter chat I co-moderate to raise awareness and help people navigate their diagnosis. I also sat on a professional panel for teens and young adults to discuss career options. Additionally, I served as co-volunteer coordinator for the second year in a row, helping to direct, inform, and manage about 20 volunteers and 450 attendees. My goal in attending, and now volunteering at the conference, is to show other people with narcolepsy that it is very possible to continue your life after diagnosis. I am a full-time mom, full-time employee, and for about three years after my diagnosis, I was also a full-time student. Since joining CSU Global in 2012, I have moved up to become a senior enrollment coach, helping enrollment counselors better address the needs of our prospective and incoming students. Being part of the narcolepsy community is very important to me. I love being able to advocate for others who are like me, and show what’s possible. You don’t have go on disability or give up on your dreams just because you have this disorder. In fact, these unfortunately life events can sometimes lead to something even better than what you imagined for yourself. I will continue to volunteer and I look forward to the 2017 Narcolepsy Network Conference in Portland, Oregon. I highly suggest getting involved in similar activities that appeal to you. Of course, and thankfully, not everyone has close ties to a disorder or disease, but volunteering is a great way to connect with people who are similar, or different from, yourself. Volunteering can also help you “try on” a new career or role, so find something that interests you and get involved, you’ll be glad you did.