Health Leader Roundtable: Raising Awareness on World Narcolepsy Day
World Narcolepsy Day is Thursday, September 22, and while medical research has come a long way, narcolepsy remains a widely unknown and misunderstood condition. People living with narcolepsy still face stigma and discrimination in many aspects of their daily lives. More research, education, and awareness are needed to improve quality of life for people with narcolepsy.
As part of our World Narcolepsy Day celebration and raising awareness, we gathered together some of our amazing Community Health Leaders to get their perspectives on pertinent topics in narcolepsy advocacy and awareness. Here are some of the insights they shared.
What do you wish you knew earlier?
Q: Is there anything you wish you had known, or wish that someone had told you, when you were first diagnosed with narcolepsy?
Alyssa Walker: When I was first diagnosed with narcolepsy, I unfortunately had a doctor who was one-sided about the way narcolepsy should be treated. I wish I would have known to advocate for myself and sought after another opinion when the treatment felt more harmful than helpful. I wish I would have looked for a more holistic form of treatment rather than stimulant-based medicine.
Bella Kilmartin: I wish I had been told that there is support out there and told where I could find it. Additionally, I wish someone could have told me not to feel ashamed because of it.
Tara O'Connor: I wish someone would have told me that it may take time to find the right management that works best for me and that I will still feel the symptoms of narcolepsy daily, they just won't be as severe as before my diagnosis and management. I wish more doctors would have given me more information on it and what resources were available for me.
Kerly Joy Bwoga: That it was more than likely that I would gain another sleep disorder. That once you have one you can gain several. Right now as I am writing this I have 5 different sleeping disorders.
Raising public awareness of narcolepsy
Q: What do you wish other people understood better about narcolepsy?
Iris Vasconcelos: Firstly, I wish that people understood that narcolepsy is a serious condition that demands an adapted lifestyle. Secondly, I wish people could realize that any condition that disrupts sleep has implications that extend far beyond uncontrollable sleep and fatigue. The consequences experienced by lack of sleep are immeasurable. Lack of sleep impacts our attention, concentration, problem-solving, weight, memory, heart, and much more.
Bella Kilmartin: I wish people understood more about the way that narcolepsy affects everything. It is not just falling asleep during the day. I wish they knew about all of the symptoms that come with it such as insomnia, nightmares, etc. I also wish they understood the emotional impact that it has and how it affects your mental health, from learning to deal with a chronic condition and navigating all that comes with that to the impact that the nightmares can have on your mental health. They really take a toll on my mental health, but it seems to be something that is really overlooked.
Alyssa Walker: I wish people understood that narcolepsy is more than just falling asleep. Narcolepsy affects just about every aspect of my life — for example, my career, relationships, and physical and mental health. It was hard for me to apply for jobs that I wanted because I feared I would not be able to handle job duties due to my symptoms. My relationships suffered because of my mood swings and emotional irritability during my excessive daytime sleepiness. During my cataplexy episodes, I experience physical harm as well as mental stress when worrying if it will happen again.
Tara O'Connor: That I just don't fall asleep randomly and there are so many other symptoms involved. I wish people understood that just because I don't look tired, doesn't mean I am not exhausted. I think there have been more days that I try to not show my sleepiness than days where I actually look tired. I wish people understood that people with narcolepsy can only do so much in a day because we get worn out a lot faster than people without narcolepsy.
Changing the way people are taught about narcolepsy
Q: If you could change one thing about the way people are taught about narcolepsy, what would it be? Is there a better way, in your opinion, to educate people and raise awareness?
Kerly Joy Bwoga: We need to change the way it's being presented on TV and in Hollywood.
Tara O'Connor: I think sleep should be taken more seriously because it is so important. If there were doctors that strictly only did sleep, and not both sleep and neurology, there would be a better chance at people getting diagnosed faster. I also think having patients tell family doctors their story [would help them] know what to look for. When people get their yearly physicals, asking about their sleep should be a part of that by having a questionnaire, and then doctors [would take] that information seriously.
Bella Kilmartin: I would ensure that people are taught how complex narcolepsy is and that it is so much more than just sleepiness and falling asleep. People are rarely aware of the amount of symptoms that are associated with narcolepsy beyond the sleepiness. I also wish healthcare professionals were taught more about narcolepsy and how it impacts other aspects of the body, too.
Becoming a narcolepsy advocate
Q: Is there anything you know now that you wish you knew when you first started your advocacy journey?
Alyssa Walker: One thing that I know now that I wish I knew before I started my advocacy journey was that there is no wrong or right way to advocate.
Tara O'Connor: For me, when I first started my advocacy journey, I was hesitant at first because I had never done anything like that before. If I knew how many different opportunities there are available, how many new people I would meet, and how close I would get to them, I would've been less nervous and would have put myself out there more at first.
Bella Kilmartin: The power of community. Finding people that relate to you and have narcolepsy too is so important. When you live with a rare condition, it can feel really lonely and isolating, and being able to connect with people who understand you is genuinely so amazing and so beneficial. I mainly started my advocacy journey because I wanted to start a blog, and I also wanted to educate my friends and family more. I didn't think that I would connect with so many people that really understand what living with narcolepsy is like.
Iris Vasconcelos: If there is one thing I wish I knew when I started my advocacy journey, it would be to always remember to put my health first. It’s easy to get involved in many projects and begin to take on more than you should. I know that for me at least, it felt as though saying “no” to any advocacy opportunity felt as though I wasn’t being a good advocate. It’s so very easy to place this enormous amount of pressure on yourself and feel as though nothing you do is ever enough. It’s taken years for me to learn that I can’t do it all. As advocates alone, we can only do so much... it’s all of our combined efforts that will make the difference.
How would you describe your relationship with your doctor?