When looking through my bookshelves recently, I realised that I had read very few books about people with disabilities, and even less about people with chronic illnesses. I grew up reading books like What Katy Did, and The Secret Garden, where chronic illness is usually treated euphemistically or else there is a miracle cure – whereas what I was looking for was books that depicted a more realistic idea of what living with a chronic illness really entails. I requested some chronic illness book recommendations on twitter and started reading.
Having now read some books that centre the experience of someone with a chronic illness, I have realised quite how much the world is missing. As a community, we are so hugely under-represented that, to be very honest, before I got sick, I didn’t even really know that chronic illness existed. These books tell a fairly untold story, and it was incredibly validating and gratifying, although also slightly confronting, to read each one. So, without further ado, here is a list of books about chronic illness that I would recommend:
- Please read this leaflet carefully by Karen Havelin
- Get a life Chloe Brown by Talia Hibbert
- Girl behind dark glasses by Jessica Taylor-Bearman
- Dear Chronic Illness by Pippa Stacey
Disclosure: This list includes affiliate links which means that as a Book depository associate I earn from any qualifying purchases and can buy biscuits to snaffle whilst I write future blog posts!
Please read this leaflet carefully by Karen Havelin
This was the first book which centres a chronically ill character that I read. The book tells the story of Laura, a woman with endometriosis. What I found interesting was that the story is told in reverse chronological order, starting with Laura living in New York with a young child, and ending with Laura as a 13/14-year-old. This format allows us to see the way in which Laura’s mentality towards her illness has developed, all the way back to the very beginning of her illness.
The story dips into many different parts of Laura’s life, when things have been going well with her health and also in the midst of big flare-ups. This really demonstrates the chronic aspect of her illness – something which many people struggle to understand. We can see the almost cyclical way she has to deal with the ups and downs of her illness, and the similar health and relationship dynamics that seem to occur at these points.
One of the most difficult things about reading this book, for me, was the way in which she talks about her different relationships, because it was something I hugely related to. The guilt of being constantly sick and needing regular help plays a huge part in Laura’s story, and ends up breaking apart several relationships. This specific dynamic is something that I think many in the chronic illness community have felt, and I know it is something that I used to feel quite strongly. To watch it tearing apart a fictional relationship was tragic, but it also made me connect very personally with her story, in a way that I had not done with a book for a long time.
As someone who is chronically ill, I connected to a lot of the themes within this book, far more than I had for a long time, because many of her struggles were things with which I have also struggled: the role of chronic illness in relationships and in identity, the strong feelings of guilt, the difficulties with different doctors, and the role that she felt she was forced to play as a patient. I wonder how people who have not had this experience would connect with this story, but I think it would be a very useful book for people to read, so they might see and understand some of the more emotional sides of having a chronic illness.
If any of my non-disabled readers do decide to read this book, please message me and let me know what you think, and how it affected you!
Get a life Chloe Brown by Talia Hibbert
This book tells a fairly standard romantic story, but with a big difference: the main character, Chloe Brown, is chronically ill. Chloe, after realising how much of her life she has missed out on due to her chronic illness, makes a bucket list to help her get a life. The aim of the list is to help her catch up with people her age and includes items such as ‘ride a motorcycle’. She falls in love with the seemingly bad-boy caretaker of her apartment block, Redford Morgan, and from then on we watch the relationship develop.
The reason I loved this book, other than occasionally enjoying a good romance book, is the representation of chronic illness. Talia Hibbert got it spot on. Many of the tensions and the things with which I struggle, having a chronic illness, were in the story. There is this constant tension between Chloe wanting to live her life like non-disabled people, but then coming face to face with the reality of her disability, and realising that she cannot do many of these things. You can see her personal struggle to find an identity beyond her chronic illness, when everything she does is so confined by her illness. She rebels against her body and sometimes she sees this as a positive thing for herself and in other cases she does it out of some sort of stubborn pride not to come across as ‘weak’.
Something this book very clearly demonstrates is the way in which her chronic illness fluctuates, and the difficulty that creates as she tries to plan anything. It seems to normalise the use of different assistive aids, such as chairs in the kitchen, whilst not making them into a big deal. They are used to show how she has had to adapt her life to her chronic illness. This is something that seems very small and subtle, but as someone who has had to make a lot of these changes, seeing them represented in a book is very validating.
In general, this book makes for a very easy read, but is very enjoyable and has such good chronic illness representation that I have to recommend it for that.
A Girl Behind Dark Glasses by Jessica Taylor-Bearman
This book tells the true story of Jessica Taylor-Bearman and her experience with severe ME. At a very young age, Jessica was hospitalised with ME and ended up spending several years in various different hospitals and ME clinics. This book tells her story of living in these hospitals, and living with incredibly severe symptoms.
One of the strongest themes in this book is medical neglect. Jessica spent years suffering due to both medical neglect and outright medical abuse. This book makes clearer than ever the danger of treating ME as a psychological illness. The level of abuse that Jessica suffered shocked me, despite the fact that I am already nervous of medical institutions and professionals. Not only did she have to have surgery due to neglect, certain institutions in which she lived made her sicker rather than helped her.
But alongside this tragic tale of abuse, neglect and misunderstanding, is the beautiful story of Jessica’s mental outlook. With an illness as all-encompassing as severe ME, she had little energy and mental space to think, yet throughout everything she maintains an optimistic and hopeful view on life. She truly learns to appreciate the small things, and the relationships with the caring people around her. Throughout her time with severe ME, Jessica describes her ability to imagine herself in different places, in order to comfort herself. Jessica is really an inspiration and the voice through which she tells her tale is truly beautiful.
This book is quite hard hitting, and I can imagine quite triggering for some people with medical trauma, but at the same time it is so well written and incredibly eye opening that I highly recommend it.
Dear Chronic Illness compiled by Pippa Stacey
This book is slightly different to the above books. It is a compilation of twelve letters, written by people with different chronic illnesses, addressed to their chronic illnesses. You might expect that this is a negative and sad book to read, but these letters show people who are learning to accept or have accepted that their illness is a part of them.
What I love about this book is the different ways in which people relate to their illnesses, the different relationships they imagine having with them and the different metaphors which they use to describe these illnesses. Whilst these letters do not sugar coat the reality of having a chronic illness, they really showcase the different ways in which people learn to live with illness, and do so with humour, optimism and positivity.
I think this book is great at undermining the idea that everyone with a chronic illness has a tragic life. It really flips that narrative on its head and, instead, it celebrates the illness as part of us. For this reason it is very useful in showing non-disabled people the different forms that acceptance can take, and the different things that even those of us with severe chronic illnesses can make of our lives.
Why read my chronic illness book recommendations?
In general, reading these books has been a highly gratifying – and somewhat cathartic experience for me. I had never considered how helpful it would be to read about well-represented, chronically ill characters in books before. It really aided me in reflecting on the progress I have made in accepting my illness and redefining my personal identity. But it also demonstrated how many challenges are faced by people with chronic illness, on a daily basis, and the effects it has on their lives.
Many recurring themes crop up in all these books, which make them really useful for those outside the chronic illness community wishing to better understand and educate themselves about the experience of living with chronic illness – as well as being extremely validating for those readers who are chronically ill themselves.
I certainly plan on reading other books which centre chronic illness, so please feel free to drop me any other chronic illness book recommendation in the comments below – as well as any feedback you might have, if you do decide to embark on one of my recommended reads.
