A listing of blogs by people with narcolepsy.
Please take the time to read some of them, especially if you have only recently been diagnosed, as reading about other people’s experiences with narcolepsy can be extremely validating. It helps you realise just how many parts of your life are affected by narcolepsy, some that you might not have noticed before, or may have simply put down to a personal failing. The knowledge that you are not alone is extremely therapeutic, trust me!
I have tried to keep this list to currently updating blogs, only so that the info you read is current and still relevant. I also tend to lean towards blogs that are generally positive in tone.
Also, if you have a narcolepsy-related blog you’d like to see on the list, email me!! email@example.com 🙂
If you have spent any time in the “narcoleptic community”, you have probably come across Julie Flygare, narcolepsy advocate, blogger and author of Wide Awake and Dreaming, her memoir describing her personal struggle with narcolepsy. Her blog is equally helpful in describing her experiences, different aspects of narcolepsy, how it feels to have narcolepsy before diagnosis, tips on dealing with narcolepsy and a section with narcolepsy information including an infographic. Julie is an inspiration and an amazing advocate for narcoleptics everywhere, and started the amazing Narcolepsy: Not Alone campaign.
Ilana is a 24 y/o with multiple conditions including narcolepsy, and writes some great, really informative blog posts about dealing with chronic illness in a proactive and positive way. Her posts are often filled with very practical advice, e.g. tips on how to deal with your condition in a workplace setting and dealing with weight gain.
A blog by the lovely Alanna, who I have head the pleasure of meeting a few times 🙂 She blogs about her everyday experiences as a young woman, a narcoleptic and a ballet dancer. Very well written and reflective.
Eloise is a 21 year old narcoleptic who is moving from America to Spain! I look forward to reading about some of her adventures over there. I loved reading her existing posts, clear but interesting descriptions of everyday life occurrences that seem normal to those of us with narcolepsy, but probably not-so-normal to others!
This site is run by the same people that run the Gluten Free Narcolepsy facebook group (a great group if you are interested in that sort of thing!), and discusses not only the gluten free diet but also other dietary changes such as low-carb, paleo, Wahl’s protocol and more. I know there are some skeptics out there, and I don’t believe it can cure narcolepsy, but let me tell you that eating healthier is never going to make you feel worse!
Gina has had a LOT of experience with narcolepsy; she has not only had narcolepsy almost her whole life, but also has a son and an ex-husband diagnosed with the same condition. Despite all this she is now making the most of life medication-free thanks to dietary changes, and wants to help others get relief from their symptoms by sharing lifestyle tips, recipes, and the science behind it all with others.
This blog is written by Claire, who doesn’t have narcolepsy herself, but blogs about the experience of having a young child with narcolepsy. Claire’s family actually made the move from London to LA in order for her narcoleptic daughter to gain access to Xyrem, and some of the posts are about their move and daily life, but the posts that do focus on narcolepsy are a really excellent resource for parents of narcoleptic children to read.
This is a blog for anyone out there who thinks that having narcolepsy will stop them from being able to travel and have fun as a young person with narcolepsy! I love Sarah’s attitude on life, as she often addresses her frustrations about dealing with narcolepsy on the blog, but always remains positive and ready to take on the next challenge. I think a lot of people could do well to take a leaf out of her book!
This blog is written by a couple, Devyn and Hannah. Hannah has narcolepsy and her husband Devyn is quadriplegic. This blog is a great description of their life together and how each of their conditions affect their relationship, and also of how it feels to be a newly-diagnosed narcoleptic.
While not totally up my alley (i’m unlikely to give up my medication any time soon!) I think anyone can learn something by reading through this blog about dealing with narcolepsy in a wholistic manner. Also a parent and a nurse, this blogger has written some very comprehensive posts ranging from going gluten free to information about gaining disability benefits.
A rarity of the blogs I have found, this one is written by a male! This is a very personal and honest blog all about this man’s family life (father of four boys!) and his narcolepsy, and how the two interact.
Experiences of a 20 y/o girl living with narcolepsy and cataplexy. Her posts talk about everyday life and how she copes with it, as well as dealing with the constant paperwork that many of us deal with due to our condition.
This blog is a good one particularly for parents with narcolepsy, but also for anyone else. Written by a single mum, her posts often deal with the daily life of a parent with narcolepsy and the guilt that can be involved in that, and she is very concerned with the psychological and sociological impacts of narcolepsy, which is a pet rant topic of mine.
The musings of a teenage girl, centered around her thoughts and feelings about having narcolepsy and how it affects her life.
This blog is very focused on health and fitness, and how they can help battle the symptoms of narcolepsy. The author, Heather, is a 29 y/o wife and mother, who also believes in the benefits of a gluten free diet.
Susan writes a lot about the mental experience of having narcolepsy – and explores different concepts such as gratitude, spirituality, health, and meditation and how they can help tackle not only the physical symptoms but also the low emotional state that they can bring with them.
You can tell just by reading her blog that Grace has an amazingly positive outlook on life. Refusing to give up on her dreams because of narcolepsy, she is currently traveling around Asia and documenting her narcoleptic experiences along the way.
Tove’s blog is not strictly about narcolepsy, focusing mostly on parenting, but her occasional posts about her condition are definitely worth a read!
This blog is not directly about narcolepsy, but is actually a dream log by a woman called Eliza who has narcolepsy. I love hearing about other people’s dreams, and Eliza’s descriptions are well-written and reflective. Gives you a good idea of how vivid and emotionally-involved narcoleptic dreams can be.
Danielle is a recently diagnosed Australian PWN who has been blogging about her experiences in having narcolepsy, traveling, studying to become a nurse and most importantly maintaining a positive attitude throughout it all 🙂
This blog is all in dutch, so unfortunately I can’t tell you too much about the content… but the author Sandra is an awesome lady who told me that “it’s important that more people know what our disease means” – so I think we can all agree with that! Happy to have people out there reppin’ our cause in other languages.
The main topics of this blog include not just narcolepsy, but also the experience of living with depression, phobias and compulsive behaviours. I think this is important information as many narcoleptics also suffer from different mental health issues, and this writer is very open in describing the difficulties that these present in her life.