Why Narcolepsy, Why Me? Why Did Answers Take So Long? When Will I Be Cured?
Shortly after receiving the phone call confirming my diagnosis of narcolepsy with cataplexy, my road to acceptance began. The “whys” and “what ifs” began racing through my mind. As I will share in my future article about grief, the journey to acceptance takes time and for each step forward there is often a step back.
When I was diagnosed, social media was still in its infancy, and the support group in my city was not well established. I spent so many hours stuck in my head, repeating the same questions, never coming up with answers to satisfy my intellectual curiosity. It wasn’t a lack of intelligence that kept me from coming up with answers. It was a lack of wisdom.
Searching for support from others living with narcolepsy
It wasn’t until I began to talk with others living with narcolepsy that I began to resolve some of those questions. For some questions, there were no answers. For other questions, the answers were difficult to accept.
Lacking other people with narcolepsy to share my journey, to provide support, and to provide counsel I reached out to others for wisdom and support. Counseling was a tremendous help in sorting through the emotions and questions that overwhelmed me. Counseling was helpful, but it was a support person of someone with narcolepsy that helped me answer one of my burning questions — "why me?”
Narcolepsy friends and support persons
Branden*, an employee, wise soul, and kindred spirit where I worked was one of the best listeners I have encountered in life. One day, when opining about my struggles, I just blurted out: “Why has life dealt this condition to me?”
His answer was profound yet difficult to accept at first: “Why not you?” he said, followed up with, “You and my friend Sean* (his friend with narcolepsy) are 2 of the strongest people I know.”
Branden added, “There is no way that a mere mortal could deal with what you are experiencing. It takes true strength to survive and thrive with narcolepsy.”
His words echo through my memories and fill me with strength. Why do I have narcolepsy? Because I can handle it.
Finding strength in the struggle
I waited 13 years to receive my diagnosis. Those are years that could have been spent receiving treatment. I can never gain those years back. If I can help another to receive an earlier diagnosis then all my years of searching and struggling where worthwhile.
Even though I can’t change the past, there are ways I can contribute to solutions. I have never been bashful speaking about my condition. Life having narcolepsy with cataplexy is a source of my strength. Reducing stigma and changing stereotypes is how I choose to flex my mental muscles. Raising awareness is the measure of that strength.
Sharing my story can help others
A year after my diagnosis I began to share my story actively at the local gym where I worked. There was one friend that was very interested in my story and continued to follow-up nearly every day.
My friend Jon* had been struggling with sleepiness for years, and an overnight sleep study years prior revealed mild sleep apnea. In spite of his CPAP compliance, he continued to experience overwhelming and debilitating sleepiness. Jon decided to schedule another sleep study after an appointment with his doctor, this time with a multiple sleep latency test (MSLT).
The results of the MSLT revealed that Jon had textbook type 2 narcolepsy. The day he got the news, Jon called me, the excitement in his voice was a flashback to how I felt immediately after receiving my news. When I received my diagnosis, I was thrilled to finally have an answer. I falsely believed that the diagnosis would lead to a “cure” and a restoration of my wakefulness.
Mirrored journeys and gratitude
Jon’s journey mirrored my own and watching him come to terms with and accept his condition was an invaluable life lesson. It was also in the power of storytelling. Had I not been open to sharing, there is no telling how long Jon would have suffered in silence. Jon was grateful for my assistance along his journey and I was grateful to have a companion with whom to share experiences.
Power of awareness and storytelling
Raising awareness allows me to help reduce time to diagnosis. Through storytelling, I have been able to spread the message about narcolepsy. Living with a misdiagnosed condition means that the opportunities for awareness can happen with anyone, anywhere. If one person can benefit from my experiences, then the pain and frustration of those experiences have been somewhat negated.
I may not be able to change the length of my journey, but if I can expedite someone else’s diagnosis and provide support along the way then I have power over my condition. The power to help others along the way. The World’s Strongest Person having narcolepsy with cataplexy approved this message.
What was your diagnosis journey like? Share your story below.
*Names changed for confidentiality reasons.
Do you feel that others judge the severity of your narcolepsy based on how you look?