Hello and welcome back to the bloggy version of The Rest Room, a podcast about living well with chronic illness! We’re going to be putting our movement series on hold for just a little while longer, to talk about how to read more when you live with chronic illness. This was initially supposed to be a New Year’s Resolution kinda thing, but it’s now February…and reading is relevant all year round!
Don’t forget, you can listen to the podcast version of this post on Apple Podcasts, Google Podcasts, Soundcloud and Spotify.
Table of Contents
Welcome to my new ToC feature! I know that my posts are pretty long, so if you want to skip my personal experience at the beginning, you can just ta p a section to be taken right there. Fancy! It’s also helpful if you want to read a bit and come back at a later time.
My history with reading
I spent my childhood as a competitive reader. Not…officially. I don’t even know if that’s a thing. But you know those summer competitions at the local library where you would get a “reading passport”?
There’d be all these activities, with super exciting stamps and stickers up for grabs, and some kind of leaderboard for who had read the most books or managed to fill their passport up the fastest.
That was my perfect summer. Forget running around and being out in the sun. Give me books and a competition.
It’s nice to know that even in single digits I was on brand, huh?
But in all seriousness, reading has always been a huge part of my life and if you asked me to define myself, my love of books would be near the top of the list.
For obvious (pain-related) reasons, I wasn’t an active child, and I was more than content to avoid the cold…and the heat…and running around (because eww) by curling up with a good book.
I went from Enid Blyton and Roald Dahl, to Jacqueline Wilson and Malorie Blackman. I read Dickens when I was too young to understand half of what was going on. As the years went by, I’d regularly visit the library and work my way through the kids, and then teenage shelves, carrying out piles of books, and adding to my never-ending list of titles. I loved it there.
During my A-Levels, I had a weekend job at a major high street stationery store, and initially wanted to work in the small book section. But a love of books wasn’t really a prerequisite, and lugging heavy boxes wasn’t within my physical capacity, so I mostly stayed at the till.
When I was 19, I spent the best part of a year in Paris. Shakespeare and Company became my favourite place to visit. I’d while away the hours, staring up at the crooked shelves, sneaking glances at the impossibly cool writers and bibliophiles who worked there, relishing the stamp that marked every book I bought.
I spent most of that year lugging Anna Karenina around with me on the Metro, as I dipped my toe into tackling novels in French – starting out with translations of Twilight and Gossip Girl, and then foolishly graduating to struggle my way unsuccessfully through Les Miserables.
At University, I still read a lot. But it became mostly academic, and I lost my habit of reading for pleasure.
As the years went by, and my health started to decline, I had to spend more and more time alone in my room. I escaped into Kundera, Vonnegut, and beloved childhood classics like The Little Prince and Winnie the Pooh.
It was during that time I first really started struggling with my hands and shoulders. I couldn’t hold open the books I wanted to and I refused to listen to audiobooks as it’s not really how I take in information. My family would try and sit and read books with me, but as grateful as I was, I just wanted to grab them and read to myself.
This was the first time I got really upset and felt like I was losing books.
This feeling was exacerbated as my fatigue got worse, and on top of the physical challenges, I also struggled to concentrate and retain information. I pretty much stopped reading for pleasure, going through the odd burst where I would binge a few books, and then have a year or more where the only reading I did was online.
I know struggling with reading is something that can be really upsetting to many people, and I also know bringing books back into my life was probably one of the best things to happen to me last year. So, I took to my Instagram Stories to find out what your biggest challenges are when it comes to reading, and what has helped you find a way to make it more accessible.
What are the biggest challenges people mentioned?
Helpfully, and perhaps unsurprisingly, most of the reading issues that people shared can be broken down into a handful of categories:
- Concentration and processing
- Physical issues/pain
- Energy
- Making time
Throughout this post, I’ll be covering some tips, tricks, and ways of thinking and approaching reading that I hope will help you!
This predominantly focuses on reading for pleasure, but a lot of the information can be used for any kind of reading.
However, before we start, please indulge a quick disclaimer:
As always, this is going to be pretty long, but it’s not an exhaustive post.
I am not a doctor or a medical expert. I will be drawing on my personal experience, the things people have shared that help them, and multiple interviews with experts on pacing and chronic illness management.
Remember, we are all different, and what works for some people may not work for you.
What I am trying to do is speak about wider concepts and strategies that may generally help you think about your relationship with how you use and ration your energy, as well as some tools and techniques that will hopefully help with reading specifically.
There were a fair few issues that people shared that will not be covered, because they are related to specific medical symptoms or conditions.
Remember, if a symptom is new for you and you’ve not had it checked out (as in, it’s not part of your “normal”), this is something you should speak to a professional about, if possible. This includes things like needing glasses. I’ll also not be covering things to do with dyslexia or anything else diagnosable that specifically impacts reading.
It’s worth remembering that everybody reads at a different pace. Some people are extremely quick readers and the only things they struggle with are the impact of specific chronic illness symptoms. Others may have bigger challenges on top of that.
I am someone who is naturally an extremely quick reader and writer, and that’s something that I’m eternally grateful for.
This gives me automatic advantages when it comes to tackling these issues because my barrier to entry is already much lower. I’m thankful for everyone across the reading spectrum who has shared their experiences to help widen the scope of this podcast.
Ok, so let’s get started. And if you read or listen to my stuff regularly, you probably knew this was coming…
I’m going to talk about pacing again
I know, I know. I’m getting like a bloody broken record.
But before you switch off, I wanted to share a realisation that I’ve had recently. And that is: whenever we talk about struggling with any particular task, it’s impossible to separate it out from literally everything else that’s going on in our lives.
I think that it’s actually a problem that isn’t talked about enough, because we often feel as though we’re “failing” at something, when we aren’t actually giving ourselves a chance to succeed (or find a way to adapt something in a way that works for us) because we’re pushing ourselves too far in all aspects of our lives.
This is where generally thinking about pacing is so important when it comes to something that requires cognitive energy, like reading. As Occupational Therapist Jo Southall explained to me, we have different “buckets” of energy: mental/cognitive, physical, and restful.
One of the things that I’ve been talking about on my podcast is how many people are not actually aware of their real level of activity. By this I mean that we may think that we’re doing very little, but there are small day-to-day tasks that can really add up and impact our ability to add in new things.
So, for example, you want to start reading a chapter of a new book. You’ve not read for a long time, so you’re already a tad nervous but hopeful.
You don’t really pace much in the day. You have to work for an hour online, look after a family member, be emotional support to a friend, as well as making sure to feed yourself and do your household chores.
You push yourself to do these activities, with very few rest breaks during the day. You then crash and spend as much time as you can lying in bed, half staring at a screen until the next obligation appears and you have to force yourself up again.
Trying to add reading into this mix will be challenging. And everything I just mentioned counts as an activity. Basic principles of pacing aim to enable you to do more throughout the day in a safe and sustainable way – without crashing out.
So, before you start beating yourself up about your struggles with reading, take some time to honestly reflect on everything you do in the day. You’re probably doing way more than you already think you are!
And just a side note, please remember that chronic illness symptoms are really bloody difficult and so few people are given anywhere near appropriate support, even with learning basic principles of stuff like pacing. So this is absolutely not something to blame yourself for!
I’d recommend reading my blog posts about pacing, and listening to earlier episodes of this podcast about reframing movement and exercise when you live with chronic pain. They’re wider topics, but I think they have important takeaways that can be applied here.
A bit later in this post, however, I will be sharing some tips to specifically help you pace your reading!
Have you ever thought about the fact that you may be reading a lot already?
Following on from what we were just talking about, how much time do you honestly spend online?
No judgement!
A lot of people living with chronic illness spend a lot of time on social media, reading and learning about different topics, connecting with people, and sharing their experiences.
I’m not saying here that any amount of time you spend online is wrong or that you should be doing less of it, AT ALL. Social media, and actually digital communication in general, can be a lifeline to so many people. Myself included.
I just want to raise this as an example.
All those Instagram captions and Stories you read, those blog posts you write, and those articles about how historically accurate the fashion in Bridgerton is (I hope I get this out quick enough for this to still be relevant!)
That all requires reading. If you’re able to work, even a little bit, you may have to read a lot of emails or reports, and as a result you may have already found some techniques that help you manage this.
Take some time to think about all the reading that you’re doing throughout the day. Maybe spend a day or two consciously trying to notice and pay attention to this if noticing is a new skill for you.
Just like with pacing and being aware of your actual activity throughout the day, maybe start jotting down all the different ways in which you already do read. It may surprise you!
It’s very easy when we find something challenging to get into all-or-nothing thinking about it. But just like movement, in many cases we still do some of that thing, even if it’s not the kind or amount that we would like or feel like we should be doing.
But…
Reading is reading is reading is reading
Another kinda basic thing I just wanna get out of the way right now is that reading is reading is reading.
- Physical books? Reading!
- Audiobooks? Reading!
- eBooks/eReaders? Reading!
- Mobile phone? Reading!
- Magazines? Reading
- Blogs/Twitter/Instagram? Reading!
- Back of a cereal box? Famously reading!
There is no right or wrong way to read. It may be frustrating if you have a preferred method that is no longer accessible, but there are other options that you can try out. And a less-than-ideal method should be, I hope, better than not reading at all if that’s something that you care about.
The number one thing that came up time and time again when I asked what tools helped people to read, was shifting away from physical books to either eBooks or audiobooks.
So, let’s quickly go over some of the benefits of both!
Everybody takes in information differently, and some people just consume things better if they listen to it. That’s why I’m doing this podcast!
It’s also a very accessible option for people, because you can have an audiobook keeping you company as you potter around the house, or if you’re lying in bed in the dark.
An audiobook gives you the opportunity to immerse yourself in a story without having to worry about holding a heavy book, making sense of the words on a page, or pacing all kinds of different things you may have to think about when reading a physical book.
Audiobooks can help to keep you company, which can be really lovely if you’re experiencing isolation, and the voices may help you get more into the story. You can also adjust the volume and the speed, and easily skip back if you need to.
I tend to zone out when listening to audiobooks – it becomes a soothing background noise that just buzzes around while I think about other things. So, as a tool for actually reading and taking in information, this isn’t all that helpful for me.
I do, however, enjoy putting on one that I know very well, and listening to it before I go to sleep as I find that very soothing and relaxing.
I actually listen to the same sleep story every single night before I go to bed. It’s on the Calm App and it’s Ron Swanson himself, Nick Offerman, telling the tale of the big bad wolf getting anger management. It’s so delightful.
Audiobooks, however, are pretty pricey.
Many local libraries also offer access to audiobooks, so it’s worth checking out their digital offerings!
And last year I interviewed a charity called Listening Books, which makes affordable audiobooks available to anyone living in the UK who has a print impairment.
This can be an illness, a disability, a learning difficulty or a mental health condition. Their online membership costs £20 a year, and enables you to download or stream two audiobooks at a time, up to a maximum of ten a week every week. If you’re eligible to join but the price would be a barrier then they can offer you a completely free membership.
If audiobooks aren’t your thing, but you struggle holding books, perhaps an e-reader is more suited to you!
So many people find e-readers incredibly helpful, and you can get ones that are more paper-like so you don’t have to deal with the glare of a screen.
Some of the benefits of reading using an e-reader include the size and weight – they’re often super super light, which makes them much less physically demanding than books.
E-readers also have a bunch of adjustments that can make the whole reading experience a lot more customised and comfortable for you – this includes changing the font itself, as well as font size and colour. You can also to change brightness settings and the background colour.
And as an added bonus, you can get thousands of out of copyright classic books for free!
An alternative to an e-reader is to read e-books and PDF’s on your phone or laptop – you can do this with the brightness down to help with glare if necessary, using “night mode” to have an orange tinge to the light, and they also have similar options in terms of adjustments.
If you like making notes or highlighting, this is super easy to do when using any kind of digital method of reading.
Like many other people, I find that e-readers are a total game changer when it comes to so many aspects of comfort and ease.
However, I personally still have a much more enjoyable experience when reading a physical book. I tend to find that because all of my work and most of my communication is digital, having reading be “analogue” is much more relaxing for me, and I take in information better when I have it in hard copy anyway. I also just love being able to physically flick through pages and have something tangible sitting on my shelf when I’m done.
I’ll talk a bit about how to optimise reading physical books later in this post.
But for now, let’s explore a few things that apply to whatever method you use to read.
You should read whatever you bloody well want to
And actually, taking a step back, what do you want to read for? What do you enjoy reading? Why do you feel like you need to be reading?
Just like there’s no right or wrong way to consume books, there’s no right or wrong content to read.
When I got back into reading last year I started by re-reading the Hunger Games series. I then read To All The Boys I Loved Before, and a graphic novel called Heartbreaker.
These were easy reads for me, that got me back into the habit of picking up books, and gave me that win and that confidence to know that I actually could still read for pleasure.
Around that time I started getting really into Jewish and Yiddish history and culture and made a reading list as long as my arm of fiction and non-fiction books. This made me really excited about all the things I wanted to learn and read.
There are a few books I picked up over the last year that I started and just couldn’t get into, so I put them aside and moved on. Over the years I learnt to get over the “I must finish a book I started” mentality, especially if it was a book that everyone else seemed to love or was a “must-read” classic.
Some of these I was able to pick up at another time. Sometimes you may not be in the right mood for what turns out to be your new favourite book. And sometimes you just hate the book, and that’s ok too!
If you don’t enjoy a book. Stop reading it. You’re not going to connect with everything and that’s totally normal! It’s going to be more of a struggle to force yourself to read something you’re not enjoying.
Many people find re-reading books they love really helpful – as they already know the story, they know they enjoy it, and it requires less intense concentration.
If you use GoodReads or any other book tracking website or app, be aware of becoming competitive with yourself and others. Whilst they can be really helpful tools, they can also make you feel like you haven’t read enough if you’ve got behind on your yearly goal, or you’re not getting through things as quickly as other people.
Reading is not a race or a competition, no matter how I felt as a child about this.
This year, I am going to keep track of my reading either in a physical notebook or an organisational app, I’ve not decided yet.
But I know that I’m naturally competitive with myself, and I’d rather take away that one small thing in the hope that it will add to my enjoyment of reading this year.
I’ll still write down the books that I’m reading for that little dopamine hit of success (and it’s just nice to remember what you’ve read!), but I did find myself excited to be able to track the book in a way that felt more about getting the win than enjoying the book, and I’d rather be a bit more chill about things this year!
Speaking of not getting too fixated on external reading goals…
You don’t have to read a set limit every day
It’s perfectly natural for your ability to read to fluctuate. This happens to non-chronically ill people too!
Sometimes you’ll read a few sentences and not be in the mood. Sometimes you’ll demolish three books in record time. Sometimes you’re not feeling particularly well or life has become more stressful than usual and you just can’t concentrate.
By not putting too much pressure on trying to reach some arbitrary goal, you can treat reading as something that you can enjoy when you can, not something you have to force yourself to do daily because the months are ticking down and your reading app is telling you that you’re falling behind.
And just on that – in a way these goals are really arbitrary. You tell the app that you want to read 30 books – but if you read 30 books that are 150 pages, you’ll get it finished way quicker than if you read 30 books that average out at 400 pages each. No matter how long the book is, you’ll still have read a book. It’s the reading that matters, not forcing yourself to meet these targets.
So, first main lesson: read what you want, when you want, and how you want.
Now let’s try and tackle some of the challenges:
Make yourself comfortable
Being able to hold books, eye strain, being hunched over, pains in your upper body, and brain fog are just some of the issues that people mentioned they struggle with when reading.
If you really love reading physical books over anything else, beyond stuff you need to get checked out medically, here are some things that help me:
- Buy paperback where possible because they’re much lighter and easier to hold and turn pages. Plus they’re cheaper. There are lots of great places to get second-hand books, too.
- Break the spine by folding the book back on itself (or get somebody to help if this is a challenge for you). Whilst the book won’t look so pretty, this helps you be able to lay the book flat without putting pressure through your wrists and hands to forcefully keep it open. And it looks well loved when you’re done!
- Use online chapter previews to gauge the size of the font. If the font is super small and crowded, it may be more difficult to read.
- Think about where you’re reading and the position you’re sitting in – you want to be as comfortable and supported as possible. I think about having my neck and back and arms supported, as well as under my knees.
- Are you reading with too little light or too much light?
- Pay attention to where the book is in relation to your eyes. Even non-disabled people I know end up hurting their neck because they’re bending down to look at books for hours on end.
- I like to use cushions and pillows on my lap and under my knees to raise a book up to eye height so I’m not straining. This also takes a lot of pressure off from holding the book by taking a fair amount of the weight since you’re not holding it up. And, depending on the size, they could even support your arms. I like this as an option because it’s free, and totally customisable with things you have at home.
- For a less free option, you can buy lap trays/bed desky things and put a book holder on them so you don’t have to hold the book at all. For the book holders, you slot the book in and it holds the pages open. That always seemed like a lot of effort to me to turn the page, but I know a few people who really like this as a method!
- I’ve never tried this, but you can also get page magnifiers if the font is too small. Now I’m saying that, I should totally try it!
- And if you find heating pads or hot water bottles help you feel more comfortable and relaxed, now’s a lovely time to use one!
When it comes to reading, a few other things that people have recommended include:
- Using a piece of paper or even just your finger to follow the words as you’re reading to help you focus
- Reading books with shorter chapters, or short stories or poems, so you have tangible stop points. You don’t have to tackle War and Peace for your reading to count – plus it feels satisfying to finish!
- Listening to the audiobook as you read (which is an expensive option unless you have access to something like a local library subscription or Listening Books)
- And some people find listening to white noise or having a relaxing track in the background helps them to concentrate
One last thing I’d add here is pay attention to the distractions around you. I literally put my phone in another room when I read because I used to use looking at my phone as a “reward” for finishing a chapter.
Just generally, I’m realising that subconsciously when I have my phone near me, I’ll check it, or I’m aware of its presence, and just the act of having it completely out of the way means I’m able to fully be present in whatever I want to do.
It’s also worth thinking about pacing your reading
This is in addition to thinking about how you pace the other things in your life.
If you find that you can comfortably hold a book open and read for, say, 4 pages, but any more than that you start experiencing pain. Stop. Take a break, and come back to it.
This is super annoying, especially if you want to get in the flow of things, but it could be a way to manage reading physical books that may be more challenging than using an ereader or listening to an audiobook.
Overall, you’ll spend the same amount of time actually reading, it’ll just be spread over a longer period of time.
Or, if pushing yourself physically and mentally to just read more without taking a break means you find it harder to concentrate and have to re-read the same sentence multiple times, you may actually end up spending less time overall!
You can apply this method to brain fog too. Even a sentence or a paragraph of reading is still reading.
This was a lesson that took me a very long time to learn, because if I didn’t demolish an entire book in one day, I’d be like “eh what’s the point?”
Well, the point, past Natasha, is to enjoy reading. To experience new things, explore new worlds and perspectives, and learn about stuff that is interesting to me and the people that I care about. That’s literally it.
You also don’t have to read one book at a time. Different types of books require a different type of concentration or energy. A heavy non-fiction vs a delightful graphic novel, or a heavy graphic novel vs a funny satirical Yiddish play from the 30s (just me?!), for example are going to be very different reading experiences.
So, you could have two or three different types of books that you drop in and out of whenever the mood hits.
It’s also worth thinking about when you’re reading in the day and how your body reacts to it. For example, if I read a novel before bed, I get more awake. Does that make sense Englishly? Probably not.
I used to get annoyed as a child whenever people would tell me that reading or listening to an audiobook before bed would help with my insomnia. I’d always just respond “but I want to actually read it….!”
However, a heavier non-fiction book about a very interesting but dense topic? That’s another story!
Think about times when you’re most awake and reading would be easiest for you. It’s a small thing that is giving you the best chance for a positive experience.
One thing I’ve also been doing is keeping books in different rooms of the house. As part of my wider effort to spend less time on my phone, I realise how often I just mindlessly grab it and scroll. I’m trying instead to pick up a book, even if it’s to read for two minutes while Sebastian goes to the loo when we’re watching tv.
Bitesized reading is still reading.
Keeping a reading journal
Something I’ve been thinking about a lot since I started reading again is keeping a reading journal. Beyond just tracking the name of the book, I often have a lot of thoughts about the content and things I want to reflect on and remember.
This is where I know that I would prefer to use an e-book – you can highlight things directly and then use the app to take notes. However, as I mentioned, I prefer reading physical books, so I’m trying to figure out a system for that. I also think that this might be a helpful thing for people who struggle with retaining information, and it’s just nice to engage more deeply with the book.
After all, I write down EVERYTHING for work (like to the point where I used to be in meetings with my editor and I’d pretty much transcribe things word for word to make sure I wasn’t missing things I had to do)
Another nice thing to do is to start a book club or a reading circle. This doesn’t have to be a big fancy thing. Perhaps you have a friend who likes to read similar books to you? Or you like different kinds of books but want to share a new experience together and open up to a new perspective. Perhaps (and with no pressure on the end date!) you could have a discussion or start an ongoing Google doc about it chapter by chapter or when you’re done.
I’m learning Yiddish at the moment and I got a bilingual reader, and also got it as a Christmas gift for a friend. It still hasn’t arrived at his house in Canada, but we’re going to read through it together on Zoom, just a little at a time. That makes it more fun, we can struggle through being alphabet newbies together, and it’s just enjoyable to share that experience with someone else.
If you don’t know people in your life that are interested in books, have a look on social media for book communities. There are a lot of chronic illness bloggers that talk about books, and there may be a book club to join. Of course you don’t have to read about your health or join chronic illness specific ones, but they may be quite good for finding a space that is more able to be paced, if that makes sense!
Ok, so we covered a lot of information today!
Like so many things with chronic illness, experimentation can be really useful, but it’s also important to just recognise that there may be times when certain activities are more challenging or just not possible. But it doesn’t mean they’ll be like that forever.
I spent years struggling to read books, but it turned out that this year when I went off social media for a while and learnt and just generally better paced my life, I was able to read again.
With my job and making content for my blog and social media, I have to read a lot. And I wasn’t all that good at pacing it. But I also spent so much energy also mindlessly consuming things, especially when I was fatigued. If I added up all that time I was reading digitally together, the last thing I wanted to do was to try and read for pleasure.
There’s no shame in that, and I’m not saying that this is the right or wrong thing to do or you should do what I’ve done, and if you want to scroll online that’s totally fine! I’m just sharing my experience here.
Of course, there were times when I just wasn’t able to read, but I realised that I spent so much time passively scrolling and feeling shit afterwards, that trying to work on minimising that as much as possible has given me hours more in the week that I can spend in a more thoughtful and conscious way.
And kind of doing what I can when I can to be more thoughtful and specific about how I use that energy within whatever context I’m able to do that is a big goal for me this year.
But anyway!
I really hope this episode has given you some tangible ideas for how to think about how to read more when you live with chronic illness, and thank you for spending your time with me in The Rest Room.
Artwork for this episode: Mimi Butlin
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3 thoughts on “How To Read More When You Live With Chronic Illness”
Whenever I read books, I tend to read very fast because I was always told since I was a little girl in Elementary school that I did not stop at periods. My mother use to ask me if I understood what I read because I read so quickly because I have never been very good at absorbing facts. I prefer to read physical books because with ebooks, I get charged every month.
I just got a book device from Waterstones in the UK. Their stores have a variety of different ones, but I chose a Gimble. It hooks around the sides to hold the book open and its fairly easy to tuck the pages into the side hooks when you turn the page. It’s a great help as I have a lot of hand pain.
Oh that sounds great!