03/01/2026
In March I wear black for Narcolepsy awareness đ¤
Narcolepsy is a widely misunderstood & under acknowledged neurological autoimmune sleep disorder where due to a lack of hypocretin, the brain is unable to control its sleep/wake cycle resulting in REM sleep invading the waking hours (itâs a lot like if like a toddler was in control of your brains âlight switchâturning it on and off randomly and without warning). But, Narcolepsy is so much more than just being tired. It is exhaustion to the core that can be equivocated to going 72 hours without sleep. Most adults have pulled an all nighter or two in their time so imagine how you felt the next day. You were probably pretty tired, your cognitive function somewhat impaired and felt generally crappy but could still get through the day. Now imagine you had to go another 2 nights without sleep AND be expected to function at 100%. That is the level of tiredness that narcoleptics live with every single day. We also battle sleep attacks where no matter how hard we fight, it is impossible to stay awake, sudden muscle weakness/cataplexy (these first two can be triggered by strong emotions like anger, fear, excitement & even laughter), thereâs the insomnia and fragmented sleep that only exacerbates the exhaustion, sleep paralysis & hallucinations, weakened immune system, chronic pain & inflammation, depression & anxiety, brain fog, psychosocial impairment, memory loss & confusion and the list goes goes on.
If that werenât enough, Narcolepsy rarely travels alone. It often coincides with other autoimmune & neurological diseases such as Lupus, MS, Rheumatoid Arthritis, Celiac Disease, Fibromyalgia, Dysautonomia (the bodyâs inability to regulate things like blood pressure, heart rate, body temperature, digestion etc.), Diabetes, psychological disorders, eating disorders, Sleep Apnea, Raynaudâs disease, etc., thus making diagnosis incredibly difficult and making living withthe disease a battle on the best of days.
The only definitive testing is invasive & painful and very rarely used. Typical testing is unreliable and too often produces false negative results resulting in a debilitating disease going undiagnosed more often than not. Typical diagnosis takes approximately 8 to 15 years and is believed to only be diagnosed in 25-50% of cases.
I didnât receive my diagnosis until I was 44 years old even though I started showing symptoms in childhood. I had seeked help from countless doctors and specialists over the years only to be told that I âwould grow out of itâ, was âjust a hormonal teenagerâ, âjust worked too muchâ, âjust a sleep deprived momâ, âitâs just a symptom of all the other diseases that you battleâ. Iâd heard it all but once my body got to a point where it simply couldnât function anymore and I knew without a doubt that Iâd become not only a danger to myself but to anyone on the road. I did the only responsible thing and pulled myself from not only a career that Iâd loved and that had become a part of my identity but from driving entirely. Even then, it took another year before I would get to see the right specialists, who would run every test short of a lumbar puncture to confirm their suspicions of Narcolepsy and rule out other major contenders such as Epilepsy.
While my diagnosis of Narcolepsy on top of what feels like an endless list of comorbitities, prevents me from ever returning to the career that I love, I am so incredibly thankful to finally be heard & seen by my (now) amazing medical team, my family & friends who support me as best as they can without judgement and for medications that give me a few hours a day where I can function a little more ânormallyâ and even drive short distances again.
Life will never look the same but I will never stop fighting especially when I want to do nothing more than give up and I will forever stay hopeful for a cure.
To all of the other Narcolepsy warriors, I see you, I hear you and I understand the isolation, fear, frustration, worry and the pain you face everyday. I stand beside you and I am here to listen & support you as best as I can.
