The Full Impact of Narcolepsy

There are so many things that make our journey with narcolepsy more difficult than it has to be, but the biggest one for me is the lack of information we are given when we are diagnosed.

I always wonder if my life would be different now had I been aware of the implications of my diagnosis right from the start.

Unfortunately, most of us are left with no choice but to learn from other people’s experiences, our own research, and often from avoidable mistakes. It always surprises me when people who have been diagnosed for longer than I have still have no idea that some things they experience are also linked to this condition.

So, from my own personal experience, I want to briefly list the full impact narcolepsy can potentially have on 4 key areas of life.

1. Impacts on health

Of course, our health is the area most directly (and visibly) affected by narcolepsy, but what most people don't realise is just how much it's affected. Besides the main — and better-known — symptoms, there are so many other ways in which narcolepsy impacts our health.

Here is my complete list of ways in which narcolepsy can impact different areas of our health.

Better-known narcolepsy symptoms:

• Excessive daytime sleepiness (EDS)
• Cataplexy
• Hallucinations and sleep paralysis
• Automatic behaviours

Lesser-known areas of impact:

• Insomnia
• Difficulty with concentration, memory, and emotional stability
• Severe mood swings
• Pregnancy concerns
• Menstrual cycle impacts
• Body temperature considerations (being too hot or too cold)
• Medication side effects
• Likelihood of developing other conditions

2. Impacts on social and personal life

Aside from physical health impacts, this is, for me, the area of life that also suffers tremendously. It’s impossible to list every single way in which narcolepsy plays a role in negatively impacting our personal life, because often, a lot of us may not even realise it.

There are many ways in which our personal lives could potentially be impacted by narcolepsy.

Mental, emotional, and cognitive concerns:

• Body image concerns over physical appearance (due to gaining or losing weight)
• Low self-esteem due to fear of embarrassment or social stigma
• Loss of ability to read an entire book
• Difficulties filling out extensive or complex forms
• Constant lack of energy
• Struggles with focus and motivation
• Bad decision-making or impulsive behaviour
• Inability to experience or express certain emotions fully (due to cataplexy)

Changes in lifestyle and social life:

• Having to be extra careful with alcohol consumption or stop drinking completely
• Distancing ourselves from loved ones
• Increased likelihood of isolating ourselves, leading to loneliness over time
• Inability to initiate or maintain certain activities
• Difficulty maintaining relationships with family
• Difficulty finding or maintaining relationships with friends or romantic partners
• Possibility of sex life being affected
• Personal safety being at risk (falling asleep while driving, etc.)
• Feeling misunderstood

3. Impacts on education and career pursuits

When it comes to pursuing a career, it’s probably easier to talk about what isn't affected by narcolepsy than what is, because almost every part of our careers will usually suffer in some way.

Here are the ways in which our work and school lives could potentially be impacted.

Career concerns:

• Limited career options
• Possibility of being passed up for promotions or losing a job
• Facing stigma from coworkers
• Decline in ability to execute tasks

Impacts on schooling:

• Difficulty focusing on studies and completing assignments
• Elevated risk of being bullied
• Possibility of being reprimanded by teachers
• Risk of not completing educational levels or programs

4. Financial impacts

The difficulties of daily life with a medical condition are exacerbated when you add financial stress to the equation.

Since a lot of people with narcolepsy are unable to work and have limited job options, they have to rely on benefits. From my experience, just the application process is enough to cause me anxiety.

On the other hand, there are ways that it can affect us that surprise even us.

When somebody experiences automatic behaviours, for example, they are almost entirely unaware of their actions, and this can lead to things like making purchases without realising it. This has happened to me a handful of times, and I can’t explain how exasperating this is.

Here are other ways in which our financial health could potentially be impacted:

• Medication costs
• Potential loss of financial independence
• Difficulty managing personal finances
• Dependence on government assistance
• Dependence on family or friends
• Decreased possibility of building an ideal life

If there are any other ways in which your life has been affected by narcolepsy, please share with us!