How to read more with chronic illness
How to read more with chronic illness
A gentle guide for 2023
If you’re like me and have a habit of scrolling through social media (even if that’s something you really want to do less of in 2023), you may have seen thread after thread of “books I read in 2022” and “reading goals for 2023” popping up everywhere. Exciting and interesting book lists, reading groups (I really loved
’s idea of a Utopian reading circle) and challenges abound……but what if your chronic illness makes reading difficult?
As someone who was a voracious reader growing up, it was very difficult for me when chronic illness made reading a challenge. It went from being my escape to a painful, frustrating experience. Losing reading felt like losing a part of myself.
But, over the years, I’ve learned ways to integrate reading back into my life and I cannot tell you how happy it has made me.
So, instead of thinking about reading challenges and goals for the new year, I thought I’d share some new ways to think about reading when you live with chronic illness, as well as a whole heap of practical tips that may help find ways to integrate reading into your life.
I actually did a podcast episode on this very topic two years ago, but I thought it would be nice to revisit and update the topic. I hope you find it interesting and helpful.
Let’s start with a quick disclaimer…
As always, this is going to be pretty long, but it’s not an exhaustive post. Feel free to pace your reading of it!
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. Additionally, reading may not be something that is of interest to you, or it’s not something you feel well enough to add in. That’s totally fine.
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.
It’s worth noting that I’m naturally an extremely quick reader and writer (to the point that some of my friends make fun of me for it) 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 post.
Barriers to reading
Helpfully, and perhaps unsurprisingly, most of the reading issues that people shared with me can be broken down into a handful of categories:
Concentration and processing
Physical issues/pain
Energy
Making time
This post will predominantly focus on reading for pleasure, but a lot of the information can be used for any kind of reading.
Why is reading important to you?
Something I’ve learned over the years is the importance of understanding our motivation for any new thing we want to do.
I’m someone who can get very interested about something in theory, but if I don’t have an underlying purpose or motivation for that thing, I tend to give up on it very quickly.
It’s why it has taken me literally six years to be ready to learn German, even though my husband is German! Until about a week and a half ago, my intrinsic motivation just wasn’t there. I’d start, and quit within a couple of weeks.
So, before we even get started with practical tips for how to make reading more accessible, take some time to think about why you want to read, what you want to read, and how you think reading more will impact your life.
You may want to read for escape or to learn something new about the world. You may need it for your work or studying. Reading may be something you miss, it may be something you always wanted to do, but were never sure how to get started. You may even feel like it’s something you should do, but it’s not really your priority. If that’s the case, are there other things you’d rather be focusing on?
Understanding your motivation (for any task, really) can be an important first step that’s worth exploring before you get started.
Sometimes, something’s gotta give
This is a lesson I’ve been thinking about a lot over the last few years.
When we talk about struggling with a particular task, it’s impossible to separate it out from literally everything else that’s going on in our lives.
I think that this is a problem that’s not talked about enough. 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, planning and prioritising is so important. I know that whenever I want to “add in” a new activity or hobby, something, inevitably, is going to have to give.
And this starts by actually learning to become aware of how much we’re truly doing on any given day. 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 do something new.
Let’s take this little scenario:
You want to start reading a new book. You’ve not read for a long time, and you’re a tad nervous but hopeful. You have decided to read a whole chapter a day. That is your goal.
You sit down, you get through the first paragraph, and you’re struggling to concentrate, you can’t get comfortable. You keep reading, but once you’ve turned the page, you forget what you’ve just read. You read the same paragraph over and over again, until you get frustrated and give up entirely.
What you haven’t taken into consideration here is that as well as adding in a chapter of a book, you may have had 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 maybe do a household chore, if you have the energy.
You may have pushed yourself to do these activities, with very few rest breaks during the day. You may regularly 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.
In this situation, trying to add something new, like reading, into this mix will be challenging - and will probably be frustrating and not all that enjoyable.
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 or even in the week. You’re probably doing way more than you already think you are!
You may find it helpful to check out some of my posts on pacing and living beyond the boom and bust cycle to help you get some of these tools down before you think about adding something new into your life.
What does pacing reading look like?
So, you’ve thought about your energy spend throughout the day, and have some time set aside to read.
But if you’ve not read for a long time, sitting down to read a chapter of a book may still be a challenge. You may want to think about building up your reading stamina, with a sentence or a paragraph or a page.
With pacing, the aim is to think about what we can safely do before we start experiencing symptoms.
For example: If you find that you can comfortably hold a book open and read for, say, 2 pages, but any more than that you start experiencing pain. Stop. Take a break, and come back to it.
This can be 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 e-reader 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.
Take this post as an example. It’s long. But you’re reading it on a digital device. You can always take breaks and come back to it when you’re ready!
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.
Learning that it’s ok to stop and start, to take breaks, took time. It was like having to discover a new way of reading, and that the way I’d always considered reading to be “right” for me (obsessive focus), wasn’t the only way to engage with books.
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 an engrossing novel before bed, I tend to push through my tiredness and keep reading. 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.
Reading is reading is reading is 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.
Physical books? Reading!
Audiobooks? Reading!
eBooks/eReaders? Reading!
Mobile phone? Reading!
Magazines? Reading
Blogs/Twitter/Instagram? Reading!
Graphic novels? Reading!
Back of a cereal box? Famously reading!
Read what you want
This is quite simple, really. Read what you want. It doesn’t matter if it’s “great literature”, the “must-read” book of the month, or something you feel like you should be reading.
If you struggle to sit down with a book, the most important thing is that it’s something you want to read.
There are a few parts to this: firstly, think about what kinds of books you enjoy. Of course, it’s great to get out of your reading comfort zone - you never know what books may surprise you. But if you’re starting out with reading again, think about the authors and genres that you’ve enjoyed in the past. If you weren’t much of a reader before, ask someone who knows you well what they’d recommend for you.
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. This is something I’ve found particularly helpful, especially if it’s a well-loved story.
Secondly, 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.
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!
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 beloved childhood comfort read you’ve read dozens of times are going to be very different experiences.
So, you could have two or three different types of books that you drop in and out of whenever the mood hits.
On the other hand, you may find it easier to only focus on one narrative at any given time. Experiment to see what works for you.
Recognise how much you’re actually reading right now
I spent a long time lamenting the fact that I “couldn’t read”, but I realised that wasn’t actually the case. True, I couldn’t sit down and read books, especially not in the same way I had done growing up, but I was still reading something every day.
I just had to ask myself the question “how much time are you spending 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, unless you want to. Social media, and digital communication in general, can be a lifeline to so many people. Myself included.
But, whether we’re on Instagram or Twitter, chatting on WhatsApp, checking our emails, or even reading this very newsletter…it’s reading.
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! And perhaps some of that reading can be thoughtfully transferred to a book, if that’s what you want.
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 may be able 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.
Digital options
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.
Everybody takes in information differently, and some people just consume things better if they listen to it.
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.
Audiobooks, however, are pretty pricey.
Many local libraries also offer access to audiobooks, so it’s worth checking out their digital offerings!
There’s also a lovely charity in the UK 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.
Reading physical books
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. Plus they’re cheaper. There are lots of great places to get second-hand books, too. These days, I buy a lot from Depop, as they tend to be in great condition.
But: the font tends to be bigger in hardback books, so I tend more towards reading them. Additionally, the pages can be easier to turn than on some paperbacks with tough binding.
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. There are literally books I’ve been gifted that I can’t read because the font is too small.
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 the back of my head, neck, back and arms supported, as well as under my knees. This support really helps with limiting physical fatigue.
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.
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.
Tracking
If you use GoodReads, StoryGraph, 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.
I set a yearly goal, but last year I was way too ambitious, and by the middle of the year, I stopped looking at the number of books I read, and just used it as purely a place to keep track of what I read.
Reading is not a race or a competition, no matter how I felt as a child about it!
I still track 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 in the past 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 it’s something I was able to be much more chill about in 2022.
If you want to avoid the digital traps as much as possible, literally writing it down on a piece of paper can be a good way to go.
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 an app that you want to read 30 books – but if you read 30 books that are 100 pages, you’ll get it finished way quicker than if you read 30 books that average out at 600 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.
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 have been highlighting my physical books this year, though, even though it’s not always particularly comfortable. Sometimes just using little sticky tabs can be nice.
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.
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.
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 (I generally don’t choose to read books about chronic illness and disability unless it’s for work), but they may be quite good for finding a space that is more able to be paced.
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 a few years ago when I went off social media for a while and just generally better paced my life, I was able to read again.
I have to read a lot for my work, 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!
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 being 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.
I really hope this 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.
I’m looking forward to what 2023 brings.