Narcolepsy and Mental Illness

Content Note: This article mentions suicide ideation. If you or a loved one are experiencing suicidal thoughts, there are resources available for support including the National Suicide Prevention Lifeline (1-800-273-8255) and online chat.

I have suffered from depression and anxiety for as long as I can remember. Flipping through old journals, I can find pages of suicidal ideation. Some of these were written by my hand while I was a young as 8 years old.

When I shared these feelings with my parents, I was often brushed off. I began seeking help for my mental health in college shortly before being diagnosed with narcolepsy in 2017.

Narcolepsy symptoms and mental health impacts

Since my narcolepsy diagnosis, I have found that my narcolepsy symptoms worsen my mental health symptoms, and vice-versa. When my depression and anxiety worsen, my excessive daytime sleepiness (EDS) increases exponentially. It can often take days or even weeks to recover when these episodes happen. The emotional turmoil can also enhance my cataplexy attacks.

When my narcolepsy symptoms are not well managed, I notice that my depression turns into a black hole. This black hole consumes everything from my motivation to my overall physical health and peace of mind. Thriving turns to simply surviving.

How negative events affect people with narcolepsy

A 2017 study found that patients with narcolepsy are 6 times more likely to experience depression than people without narcolepsy.¹ It was proposed that these findings were related to the negative events that often occur to people suffering from narcolepsy. These events were defined as reduced quality of life and social stigmas due to having narcolepsy.¹

Below, I have listed some real-life examples for both:

Reduced quality of life

• With EDS, simple tasks become difficult, and difficult tasks become nearly impossible.
• Some people with narcolepsy may be unable to work full time and struggle to make financial ends meet.
• Medications used to treat narcolepsy are not enough to erase symptoms. People struggling with narcolepsy must then learn how to use alternative coping strategies for their permanent symptoms.

Social stigmas

• Friends and family may shun a person struggling with narcolepsy due to their inability to fully understand the severity of their condition.
• People with narcolepsy often struggle to work fully scheduled days and may lose their jobs due to burnout if not properly accommodated.
• Dating may become more difficult with narcolepsy.

Making a case for provider education

Regardless of why a person with narcolepsy experiences mental illness, this co-occurrence can cause problems navigating medical personnel. Unfortunately, there is still much work to be done in the realm of educating physicians about certain rare diseases like narcolepsy.

It is not uncommon for narcolepsy to be mistaken for other conditions by healthcare providers. This could be due to a lack of education, diseases sharing symptoms, and more.

The challenge of overlapping symptoms

I am sure it doesn’t help providers that narcolepsy symptoms overlap with other mental and physical conditions. For example, some symptoms that occur with narcolepsy include fatigue, lack of motivation, dreaming while awake, and hallucinations. These same symptoms can be mistaken for mental disorders, such as schizophrenia and depression.

Comorbidities such as obesity, hypertension, anxiety and depression, and even other sleep disorders like obstructive sleep apnea are common in people with narcolepsy. These extra conditions have the ability to significantly impact a person’s daily function. As such, their presence may result in the delay of a narcolepsy diagnosis and improper treatment.²

Will this path become easier?

It can be difficult to manage the various comorbidities that narcolepsy can result in. It can be even more difficult to advocate for your health when these comorbidities contribute to mistakes made by healthcare providers.

As narcolepsy becomes more well-known, navigating these waters may just become easier.