How much does narcolepsy shape my identity?
There is something that I hear a lot when interacting with other people with narcolepsy, or in fact any chronic illness: “it doesn’t define me”.
While I agree on a basic level that a person can never be defined by their medical condition alone, I personally find it very interesting to think about the degree to which having narcolepsy has shaped my experience of life, and therefore affected my personality. It is undeniable that narcolepsy has affected the ways in which I interact with the world, with other people, and with myself. How could it not? If I was still able to do everything with narcolepsy that I could do without it, it would be hard to call it a disorder at all.
In my case, having narcolepsy during my teenage years had obvious impacts on my social skills, on my ability to study, and on my self confidence. I’m lucky that my own resilience has lead to considerable personal growth in trying to make up for these deficits, but either way narcolepsy definitely made a considerable impact on the ways I function in the world, in many more and less obvious ways.
Why does reading matter to me?
Years ago I gave up on reading books.
Throughout my childhood, I was an extremely avid reader. I started reading very young, and remember impressing adults with my ever-expanding abilities. I would read about anything, picking out books from the library on every topic. I still find myself remembering miscellaneous facts about plants and animals that I learned from books I read in primary school. I read fiction too, of course. I can recall taking long plane trips between Australia and England, racing through 3 books over the 24+ hours of flight time.
All of this reading informed the way that I speak and write, and even the way I think. It taught me to use language descriptively and precisely, which is one of the things that I feel really defines my personality, and one of the things that I like best about myself. However, over my teenager years, I got sleepier and sleepier… and the charm of reading starts to wear off quickly when you often fall asleep before you’ve finished one page.
In the years since, I’ve been a very apologetic non-reader… embarrassed by this gap in my intellectual repertoire. I’ve been so jealous of people with the ability to read, not only because “intelligent people read books,” but because I did a uni research project on the importance of reading actual physical books (as opposed to reading from screens) on the brain and understand the value it has in forming important neural pathways. But no matter how great I knew reading could be, I didn’t have the physical capacity to override my sleepiness, and so over time convinced myself that I wasn’t really missing much.
Over this period, I have become obsessed with podcasts.
Like actually obsessed. Ask my family or my housemate and they will tell you, rightly, that I often have a podcast on while in the shower. The podcast that sparked off this obsession was This American Life, which is far from unique amongst podcast listeners. I was exposed to one episode through a university lecture and immediately went back to listen through 400+ back episodes, deeply enjoying the way that this audio format could tell some very personal and intensely moving stories with the same feeling of intimacy that you can get from a book. That feeling that you are right in another person’s mind, experiencing their thoughts in action. Hearing from the perspectives of different people and exercising your brain’s empathy centres.
As a person with anxiety, I find that listening to the thoughts and feelings of other people (in podcast form) is generally preferable to engaging with my own unending loop of spiralling brain traffic. They help me to avoid becoming completely and utterly consumed by my personal problems, and remind me that I do actually have a lot more in common with other people than it sometimes feels like.
Slow change and building new habits
A couple of years ago during the summer break, I was listening to the podcast Chat 10 looks 3. It is hosted by Leigh Sales and Annabel Crabb, two prominent Australian journalists. The podcast is a candid conversation between the two friends about whatever they are watching, cooking, listening to or reading.
And this is why I mention this podcast in particular – because hearing these two women speak about the different books they’ve loved, and how these books have affected the way they think, forced me to recall the exact experience of reading a great book. And I missed it.
It was actually great timing because since starting Xyrem, I have actually been reliably awake enough to try again. Over the past few years, I have had the occasional conversation with friends where reading has come up and thought “Oh, I could probably do that now.” As with most things, I toyed with the idea for a while, never really making a commitment, until the aforementioned podcast struck me with the motivation to just dive back in.
So on Boxing Day two years ago, I grabbed a few books from my mum’s shelf, sat down, and read a whole book. Half that night, and half the following morning. The actual content of the book wasn’t anything special, but having that experience of being engrossed in a story was a very emotional experience for me. It felt a bit like connecting to a piece of myself that had been lost for a long time, one that I hadn’t expected to get back.
But then, I stopped. As usual, I was paralysed by choice and had no idea how to move forward. A quick google tells me that there have been approximately 5 million novels published in the english language, and that doesn’t even include non-fiction! How is a chronically indecisive person meant to handle that type of conundrum? I also didn’t know how to make time for reading in my life. I was working a full-time job, and along with exercising and socialising, that took up most of my time. Once I was relaxing at home, I would always end up wasting the spare hours scrolling through my phone, simply out of habit. A week turned into a month, and before I knew it I hadn’t read another book in two years…
During that time, I managed to partner up with my boyfriend, who is a much better nerd than I am and avidly updates his Goodreads account on a regular basis. He knows actual facts about culture and politics, instead of my scatterbrained mish mash of knowledge gained from podcasts and skim-read articles. While he’s too sweet and understanding to ever lord this over me, I was and still am quite jealous of his ability to sit calmly, learn and retain information in this way. I had been thinking about reading since before we met, but I can’t deny that his love of reading gave me some of the extra inspiration I needed to give it another shot.
Skipping forward to the start of 2020, I had a few days with nothing to entertain myself and I decided to take a big step. I’d been talking up my desire to read for so long it seemed like a joke, and it was time to take some action. I walked to the library, signed up, and chose a few books from the shelves. Even this felt like a bit of a revelation, as I hadn’t really been in a library for over a decade.
Only one of the books was intended to be read cover to cover (I also picked up an astrology book and a counselling text book to flip through). This book was called Upside, by Jim Rendon. I was determined not only to finish this book, but to read it in smaller chunks, instead of racing through like I had years earlier. I had to set up a sustainable habit, so that I wouldn’t feel overwhelmed like I was last time. This way, I could see myself making these smaller chunks of time available even when things get busier; as I step into my new job and my studies start up again next month.
Upside was a great book for me to read, not so much because of the writing but because the content was really affirming for me. The book discusses post-traumatic growth, the idea that while stress can be one outcome from traumatic events, many people experience that trauma can lead to positive life changes that would never have happened without the trauma acting as a catalyst. (I’m hoping to write a summary of the book and how it pertains to my experience with narcolepsy shortly…)
Now, I’m committed to the idea of keeping it up. I’m not a person who loves making goals, as they can be a bit of an anxiety trigger, but I figure the goal of one book per month for the year of 2020 is realistic enough to try my best! 🙂
Reading, narcolepsy and identity
If you were wondering why I introduced the idea of identity at the beginning of this post, allow me to spell it out clearly…
While narcolepsy is not life threatening, and does not rob us of our functionality in the same obvious and violent way as some other long-term illnesses, it has the ability to slowly rob you of the little things that make you you. The things that make your life feel like it is actually worth living. This reading issue might only be one tiny example, but it has had an impact not only on the way I spend my leisure time, but also the way I actually think about myself.
I’m not trying to throw myself a pity party here, as of course a person can live a good life without reading, and I haven’t magically changed my life for the better after reading one book. I merely wish to highlight the countless number of subtle ways that narcolepsy has an affect on our lives, and the fact that these can add up to quite a significant change in a persons behaviours and interests.
And it’s not just the sleeping. Many people with narcolepsy will find themselves avoiding certain activities and situations out of the fear of not being “all-there”, of embarrassing themselves or acting inappropriately while half asleep, even if that fear has never been realised. People who once loved sports are afraid of a sudden cataplexy attack taking them out, former cinephiles are unable to make it through an entire film. We can live without these things, but if we don’t find new hobbies or passions to replace them, we end up with lives that are lacking.
To finish up, I’d also like to call attention to the fact that it is only through starting on Xyrem that I have been able to make this change. I’m not here to promote Xyrem, and am always the first to point out how disgusting it is that there are so many people here in Australia who are unable to experience the life changing effects of this medication because of the extortionate pricing (we are not able to access help from any insurance or US-based financial aid schemes).
However, the fact that finding effective treatment can slowly bring back parts of our lives that had seemed lost to the fog really highlights just how much narcolepsy can take away from us. It’s been strange for me to discover how much I didn’t even realise I was missing.
I would love to hear some comments from other people with narcolepsy about how you feel about this topic. What are the ways in which narcolepsy has impacted your hobbies, interests or even your personality?
Great post!! I’ve been thinking about this lot lately. I’ve been posting photos of me relaxing (and reading!) in the sun. It made me wonder what people would think if they knew i have to take a stimulant to be able to relax like that without immediately falling asleep (and still struggle to keep my eyes open). It sounds weird to me even though it’s my own life.
Thanks Lydia! I totally agree it is weird to think about having to take medication just to be able to read, but I guess we are lucky that at least we can do that 🙂
This blog post could have been written by me with how much I related to it! I used to be grounded from reading as a child simply because it’s all I care about doing! Then I would fall asleep reading and just stopped completely.
I finally read my first physical book in years just last month! During my book drought, I learned to absolutely adore audiobooks though.
Hey Elle, nice name haha. I was worried for a second when I saw your comment that I accidentally wrote one on my own post!! (You never know with narcolepsy lol). But I’m glad to hear that you’ve also been able to find your way back to the books 🙂
For years I hadn’t realized that I stopped reading. I just couldn’t make it through one page without either falling asleep or zoning out and having to reread the page. I couldn’t listen to podcasts too because my brain would forget to listen. Haha
My husband and I always talked about making Sundays our “reading days” because all the stores are closed anyway, we might as well stay home and read, but we never did it. Always talk. Recently though my husband read a book called Indistractable by Nyr Eyal (he’s obsessed with podcasts too and they recommended it) and he told me about everything he learned and we decided to start putting our phones away and I discovered how much extra time I had on my hands all of a sudden. So we made a bedtime schedule that our phones get turned off at 7pm and we read for an hour before bed.
A strict schedule is so important to regulating my narcolepsy because I can’t afford medication so fitting this time in without phone screens or noise really worked well for me and my sleep.
Now I keep a book in my car, in my purse, on the table, by my bed, etc. I have different books for when I have free time that I can easily pick up where I left off and it’s great. Now I’m discovering a love for podcasts too for when I’m driving because I realized it helps keep me awake!
This was a really good post that I related to a lot. Thank you for sharing!
Hey Jennifer, wow that’s so cool that you both just decided to make it happen, and I’m sure it helps your sleep routine too! It is a bit easier to have discipline when you have someone in it with you. Podcasts help me stay awake as well, one of many reasons that I love them 🙂
Well said Elle. Ironically it took me 3 attempts to read because I fell asleep. I’m very discerning about what I read for all the reasons you say. I’m also bloody minded about reading. I’ve found it an essential part of the process of redefining myself. It is a process that I’ve accepted as an inevitable part of having N and essential to retaining relevance to my family, friends and community. Thanks for your advocacy Elle. It makes a difference.
Hey Craig, yes I’m often self-conscious that my blogs end up being pretty long because I know a lot of PWN might struggle to read the whole thing… Unfortunately I can’t figure out how to make myself less wordy haha. Thanks for your kind words and I’m flattered that you made all three attempts!
Elle I thought it was pretty concise! Certainly worth the read. By the way – I’ve been told by many that I’m a little wordy with my correspondence. People with N endure a great deal of misunderstanding which I think leads us to try to be very clear with what we say. You are doing a great job at that so keep up the good work.
I have not read a book for 30 years! There I said it! Shame and embarrassment well up inside me. I can read a computer screen – so it’s short articles for me. Podcasts and talks all the way. Holding a book in my hands leaves me awoken by the thud of a book on my face or the heavy nod of my head startling me to being awake. My poor mobile phone has taken a drop to the floor many times. I really can’t get the 5 million book figure out of my head. Thanks Prof Google. Not reading just became part of me besides the nausea I felt when people talked of reading books. It’s not a topic I come across much so my nausea reaction is kept in check. I remember a significant other felt I had to read a certain book so strongly and suggested I march around the room whilst reading. Subsequent frustration would eventuate with protests from each side. Marching reading with strong reinforcement from the sidelines – not a fan! In reading your account I recalled that I have been on Modavigil for 10 years and not remembered to even try and read a book. So thank you for sharing this I am so grateful. I will give it a try. I am still flawed that 20 years of conditioning left me so stuck in a box I didn’t consider to try. I was fortunate that my Narcolepsy like symptoms * did not show until after my degree studies. I feel for you there.
* I have seen 2 Specialists who don’t agree – 1 says yes to Narcolepsy the other to Excessive Daytime Sleepiness. To me it’s functionally the same affecting every area of my life. I cannot drive, if not medicated sleep most of the day, fall asleep on buses and trains, have micro sleeps mid conversation or tv show, forget things, have poor sleep quality and flare ups. The list goes on. I am so grateful for these new medications that allow me to function. Thank you again.
Hi Karyn, I totally understand how it wouldn’t be something that would come to mind. When you are so used to avoiding something, especially when it brings up feelings of shame, it’s only natural that your brain is trying NOT to think about reading whenever possible! I’m glad this has reminded you of the possibility though, and wishing you best of luck with trying to get back into it 🙂 Personally I still have some times where the reading makes me sleepy but the fact that I can get through a few pages at a time feels like a huge achievement.
This is about me. Everything you’ve written I relate to 100%! I was the biggest book nerd growing up (thanks to a librarian mother). But once I got sick I stopped reading and it’s haunted me for 17 years. I recently started a new job and all of my colleagues talk constantly about the amazing books they’re reading. So this year I picked up a book and instead of listening to the My Favorite Murder podcast on my way home from work, I now read. I’ve nearly finished my first book and can’t wait to get stuck into my ever growing list of books I want to read.
Hey Suzy, wow it’s so funny quite a few people seem to have started up again recently. Must be something in the air inspiring us all to get reading haha. Here’s to ticking some books off the list!
This is incredibly relatable to me! I too once LOVED reading. I stopped around age 13, and it’s still strange to me (at the age of 30) that that isn’t truthfully a component of who I am. I was a great reader and care(d) so much about the english language.. I was always so encouraged by adults to continue reading. And it also makes me feel I’ve lost something. A piece of myself. I have genuinely enjoyed audiobooks as of late, but maybe I could try again. I was only recently diagnosed with N type 2, so I have yet to begin medication. Hopefully soon and I can maybe uncover that piece of myself once again!
Hey Rachel! Yes, medication should help with that so it may be worth trying once you get that all sorted. Half the struggle is staying awake and I’m finding the other half is getting back in the routine! I’ve been falling a bit behind in the past couple of months but perhaps with all this time spent indoors now we will have more opportunities…
All I can say is “THANK YOU THANK YOU”! You have explained me & my feelings perfectly. I was/have always been one who likes to read. I didn’t realize how Much I had been avoiding reading until I saw the stacks of magazines & books I’ve collected as “Must Reads” til Lately! N has definitely affected my personal perception of myself but I’m determined to NOT LET IT ROB ME OF ANYMORE JOYS in my LIFE!🙏🏼 I’ve recently left the working world & trying to get better control of my N. It has felt like I was losing my Life little bits at a time. But your post has reminded me & given me more resolve to fight N! Does help to know your not alone! Bless You!♥️
Your entire blog relates so much to my experience, but this post in particular was so personal that I just had to thank you. I flew through books as a kid and can’t get through a few pages without my eyes glazing over now. Everything down to the avid reader boyfriend is spot on! I’m in the process of being diagnosed/can’t afford Xyrem and was really starting to feel alone in my sleepiness and hallucinations, but your blog gives me hope. Thank you ❤️
Im sure glad a did a google search on “how to describe Narcolepsy to others”, because if it wasn’t for that I would’ve never came across this blog.
Thank you so much for sharing your life and struggles with Narcolepsy. As I’ve found it hard to come across people like myself who have it this was very helpful and redefined a lot.
Personally I’ve never been into books because of the issues I had staying awake reading it let alone remembering the content.
You mention being on Xyrem. I know it’s a fairly new RX out there. Seems like it works pretty well for you. Prior to that what RX were u on?
Again thank you for sharing this as it makes me believe I can do the same. I sure hope you see this and reply. Hope all is well!!
I have so many books that I would love to read, but I can’t concentrate for too long and I sit there thinking that I should be doing something like the laundry, looking after my native plants, etc etc etc.
I was just reading your article and comments while listening to a Podcast. I am 73 with Narcolepsy and Central Sleep Apnea. I was greatly disappointed when my doctor pointed out that the older I get, the worse my condition will get. I have struggled for years to read and found that reading on my ipad is easier than books.
I laughed at your statement that a chronic illness does not define me. A few years ago at the VA, a dietician told me she does not believe we should allow our illness to define us. My instant answer was as a disabled veteran. The only reason I have VA services that give her a job is that my illness identifies me. Yes, my illness identifies me in many ways. I can not drive 200 miles anymore. I have days I sleep all day. I have canceled social functions because I will not be able to make it home afterward. Finally my illness has given me an insight on life and how precious it is that most people do not have.