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Well hello! It’s safe to say I didn’t expect my first bookish post outside of my old format to be shared during a global pandemic, but I think now more than ever, we could all do with some truly brilliant books to sink our teeth into.
There’ve been some wonderful chronic illness-inspired releases lately, spanning all kinds of genres, and today I’ve compiled reviews of some of my favourite reads over the last year or so. Each book will be linked by the title, so if there are any that strike your fancy, there’s really no better time to support a chronically ill author. Enjoy!
“I don’t want you to tell me that I can achieve anything I set my mind to – I want you to tell me that what I’m doing is already enough.”
“Every word written in this book was written within the confines of my home. Spanning over nearly three years this book is a testament to my time being housebound and proof that despite all the suffering, there is always happiness to be created, peace to be unearthed and a life to be lived.”
Within These Four Walls presents a collection of short essays, reflections and prose, straight from the heart of author Evie, who is housebound due to Severe M.E. Rather unique in structure, the short and varied submissions may be particularly appealing for readers with cognitive issues, who struggle to comprehend bigger volumes of text: you can dip in and out of various sections, and take in as much or as little as you feel you need to at any given time.
Evie’s writing style is beautiful. Each paragraph and verse is thoughtfully crafted, and portrays the wealth of insight that her experience has personally taught her. Her use of creative metaphors and ‘Conversations with Wisdom’ are real highlights throughout the book, and the language used achieves an excellent balance between beautiful lyrical flow whilst remaining down-to-earth and grounded in reality.
I will admit a couple of personal hesitancies with fully recommending this book, rooted mainly in my opinion that this book could have differing impacts on people at different stages of their own illness. For some, the theme of being grateful for suffering and the lessons it brings could perhaps be more detrimental than empowering. I know that for me personally, there would have been a point in my own illness experience where I just wouldn’t have been ready to hear this sentiment, no matter how sensitively communicated, and I would have had to put the book down for my own wellbeing.
For those working on seeking acceptance within their own situation, however, this read could offer a much-needed guiding light. This book was crafted with happiness and positivity in mind: although I personally would have loved to also see reflections from the author on the even earlier stages of coming to terms with illness and the darker strands associated with this, and believe these could have added another element of depth to the read, I can understand why a more uplifting narrative was pursued instead. Many people with chronic illnesses will have been waiting for a book like this, and there’s no doubt in my mind that those in this position will turn the final page feeling a little less lonely than they did before.
Therefore, on consideration, my best advice would be to approach this read carefully. It’s always wise to remember that one person’s mindset, no matter how wholesome or empowering, is not necessarily meant to mirror your own. As Evie explains herself in the concluding submissions of the book, it’s all about listening to your inner-self and becoming attuned to what brings *you* joy.
The one thing I really took away from this read, however, is a refreshed appreciation for the power of writing. As communicated throughout the book, the process of writing allowed Evie herself to remain grounded and make sense of her situation. It gave her a means of sharing her learning curve with others, and finding a creative outlet to express the challenges that long-term illness callously presents. As she rightfully shares, although a person’s body may be injured, their mind can still be free: to me, this book itself is a gorgeous testament to that very fact. Reading this book inspired me to indulge even more in my own writing journey, and I hope it encourages many, many others to do the same.
“… since I came home from the hospital, I simply don’t have the strength to devote myself to domestic combat even if it is the only means of reassuring him that I will be okay, even if I’m not sure that’s true myself. It’s hard to get well around a perpetually pissed-off person.”
Within the first couple of pages, this collection of fictional short stories had already broken new ground. It was the first time I’d seen not only anaphylaxis (episodes of severe allergic reactions), but the emotional and social toll of such a condition, believably addressed in a novel. Protagonist Maeve’s youngest daughter being unwillingly tossed into the throes of this condition serves as a fitting introduction to this book, and in my opinion, sets a powerful tone for what’s to follow.
Although each short story within this novel covertly highlights individual topics, the narrative voice and overriding themes remain consistent throughout the entire book. Maeve, diagnosed with multiple health conditions including Crohn’s disease, is resignedly navigating the challenges of modern family life, including parenting a child with ADHD and Asperger’s, balancing a precarious marriage built on talks of equality that simply aren’t put into practice, and facing the strained and increasingly complex family ties that bind them all together.
Each story is incredibly well-written; subtly literary and told with incredible insight. For me, not every individual story held my attention, and I’ll admit there were points where my mind strayed away and I was tempted to skip ahead, but this could well be because I was so engaged with the health-related elements that I was keen to get back to them. I reckon each individual reader will take something different away from this book and the stories within it, with some themes resonating much more than others. I can imagine, however, that this will be one of those reads that, should you come back to it in a few years’ time, could be interpreted in a whole new way.
The one thing I believe will remain consistent, though, is author Trueblood’s real and relatable characters. She shows no fear in communicating their complexities and inviting us as readers to really get under their skin: as time goes on, we see how circumstances weigh upon the family members and shape their development, protagonist Maeve included. The raw and relatable portrayal of physical and mental illness in this book make it an excellent adult read for anybody looking to delve into thought-provoking literature, not centred entirely around chronic illness, but with illness-related topics interwoven all the way through the story. Take it from me, this one will make you think.
“If this letter was part of an inspirational movie, I’m sure I would be saying a heartfelt thank you. Dramatic music would play whilst I’d gush about how becoming ill changed my life for the better and helped me discover more about myself as a person, whilst I waltzed off into the sunset with a handsome prince and some kind of small fortune due to a dramatic plot twist.”
Published in 2018, Dear Chronic Illness is a compilation of letters written by young people, addressed to their chronic illness. As the compiler of this book, I’m obviously biased and will keep this one brief, but essentially, it’s a short and sweet insight into life with a long-term condition. The individuals’ letters cover diagnoses spanning from endometriosis to fibromyalgia, POTS to brain tumours, and so much more, all told within the context of the writer’s unique thoughts and experiences.
Royalties from sales of Dear Chronic Illness are donated to my social enterprise, Spoonie Survival Kits, and I’m thrilled with the somewhat unexpected positive response the book continues to receive. If you have brain-fog and perhaps struggle with bigger volumes of text, this book and the succinct content within it could be one for you. Again, I’ll leave some further insight into this one linked in this blog post, including the rather remarkable act of kindness that brought this publication about, and tootle off on my way again. Nothing to see here…
‘A sudden heavy click-clack, click-clack of heels built towards a crescendo, until my ears felt like they would explode from the stabbing sound.. […] It eventually stopped, but not until after the damage had been done to my throbbing head.
“Hi, I will be Jessica’s Occupational Health Therapist,” a foreign voice said coolly. […]
“‘I see,” Mum acknowledged. “Well, considering you work with noise-sensitive patients, I would have thought you would have worn more suitable shoes.”’
Jessica Taylor-Bearman’s A Girl Behind Dark Glasses marked a turning point in the UK ME/CFS community. For the first time, the wider public were to be exposed to a real-life story that didn’t play into the flawed and outdated misconceptions about the condition, or twist the person’s experience into a sensationalised media story… instead, quite the opposite. The words were coming from the mouth, quite literally, of the girl who spent four years of her life in hospital, struggling to speak into her voice recording device and document her experiences.
This real-life memoir follows the life of Jessica chronologically, from her typical pre-illness childhood, to acquiring the condition, to the rapid and life-threatening deterioration in her health. Medical professionals struggled to provide the answers and level of critical care Jessica and her family desperately needed, and the reader has a front row seat in proceedings as the subsequent events unfold.
One thing I experienced whilst making my way through this book was the desire to read it as somebody who wasn’t already familiar with M.E. My own experiences and knowledge of the condition meant that I breezed through explanations and terminology that were familiar to me, but there were points where I wondered whether a non-disabled person would be able to comprehend or fully appreciate the magnitude of them as quickly. I personally wanted to hear even more about the onset of the condition and really delve into why there was this stigma around it, topics that were lightly touched upon in the opening chapters. However, I recognise that many people will have been drawn to this book because of the hospital elements of the story, and it’s from these chapters where the most profound events and realisations occur.
Conversely, there were also elements of the condition that I thought were explained particularly well, such as sensory overload. Infamously difficult to describe, the way the difficulties that such a symptom can bring were excruciatingly driven home to the reader, is a testament to Jessica’s writing skills. You can’t help but become emotionally invested in her uphill battle to learn how to communicate and write once more, and the book is effective in making us realise just how often so many of us take these everyday skills for granted.
A really important element of this story, in my opinion, was the representation of medical professionals in Jessica’s journey for treatment and answers: not only the wonderful staff who made a positive difference, but the disgustingly unjust roles that many others played as well. As the book plays out, an important theme of challenging the autonomy of medical professionals emerges, something which is key to so many people’s experiences of chronic, invisible illness.
Readers should be aware that this story involves real-life incidents of medical trauma and abuse. It’s one thing to read about such a horrifying situation; I can only imagine the strength it took to write it. Anybody affected by similar issues should proceed with caution, but I personally was glad these elements was included. The world needs to hear such stories and know that these things happen, so that steps can be taken to ensure they don’t ever have to happen again.
Overall, A Girl Behind Dark Glasses is a unique and incredibly validating read. The sharing of the situational and medical realities of ME/CFS, combined with Jessica’s shining personality and humour, make for an incredibly important book. There are countless elements that individual readers will take away from the story, but personally, I also want this book read by any healthcare professional who may encounter somebody with a chronic illness. It’s time the medical industry become better informed, and this book marks an important step forward in that process.
“sure, the dark was unbearable,
but the light was where
she really felt the difference.”
Those of you who’ve been around for a while now may remember me fangirling over Jared’s debut novel Waves, both through Spoonie Survival Kits and my previous quarterly book reviews. Given how much I genuinely loved and appreciated this previous book, I felt safe in the knowledge that whatever Jared did next would be a triumph… and that was even before I learned about the subject matter of Lyme.
This new collection of poetry was one I devoured in a single sitting. Although short and sweet, each individual poem insightfully captures some of the relentless challenges of debilitating chronic illness from the eyes of the carer, the bystander. As poetry isn’t my usual go-to, I was somewhat taken aback by such a strong sense of person consistently coming through, and just how astutely some of these complex emotions were portrayed.
I loved that the collection didn’t shy away from delving into incredibly complex experiences: contending against disbelief from medical professionals, facing the angst of consistently unanswered questions, and trying to make sense of the injustice and unfairness of it all. For me, it was ‘Emails’ [P26] that hit me the most: the survivor guilt that comes if or when things do begin to improve, and the unique challenges of being sought after for help and advice from those less fortunate. To date, this is the first time I’ve seen this somewhat taboo topic discussed in literature, and it made me feel seen.
As much as I dislike the phrase, Lyme really takes you on a journey. Each individual poem thrives alone, but the book as a collective takes things to a whole other level, intuitively capturing the uncertainties of fluctuating illness and using them to create art: art that will touch not only the chronic illness community, but everybody who’s lucky enough to come across it.
“It’s crystal clear to me that nobody wants to hear about it, but I will never finish needing to tell how much it hurt, how much it hurts, how bad it is. I’m always looking for a scale to measure it by, some way to pierce the thick skin that separates me from other people, to make them understand.”
For me, PRTLC was one of those books where I felt a weight being lifted off my shoulders as I read on… weight that I didn’t even realise was there to begin with. Despite the author and myself having significantly different long-term conditions and lived experiences, this book and the themes tackled within it made me, as a chronically ill young person, feel acknowledged.
You may remember my little online book club last year, discussing some of the themes addressed in this novel in more depth. This book tackles big, big issues: finding stability in fluctuating illness, remaining visible when you have an invisible condition (and whether this is something to be desired or feared), medical trauma and the aftermath of such events, both medically and socially disabling elements of chronic ill-health, representation of such conditions in the media, and so much more. In essence, there’s some heavy hitters in there, but the narrative voice of Laura takes us through it all in an incredibly accessible and engaging way.
With the story beginning in present time with adult Laura, and each chapter retrospectively taking us back to earlier points in time, the unique structure of this book does an incredible job of tackling the complexities of fluctuating illness, without resorting to an inappropriate ‘happily ever after’ conclusion that would no doubt lack believability for so many of us. If you’re looking for an engaging and thought-provoking read, regardless of whether you’re disabled or non-disabled yourself, this one is for you. And when you inevitably need to discuss the issues raised and/or fangirl over Havelin’s writing, you know where to find me.
“I know that this time in your life may be full of questions and uncertainties. Is university the right choice for me? Should I live at home or move away? How do I manage studying on top of day-to-day living? What support am I entitled to? Will my flatmates understand my situation? And, most importantly, how on Earth do I fit all these pyjamas into just one drawer?”
Well, I’ll keep this one brief. University And Chronic Illness: A Survival Guide is my debut non-fiction book, written in response to my own experiences of being diagnosed with my long-term condition during my first year of study. Unlike the resources currently out there for disabled students, this book goes way beyond only the academic elements of university, and instead covers all elements of student life: socialising, independent living, managing your finances, and what to do when things go wrong.
It’s primarily an informative resource full of niche tips and advice for any prospective or current students dealing with long-term conditions, but there’s a good dollop of personal stories and anecdotes in there too… including some personal situations that I never thought I would share. All in the name of entertainment, hey?
The book also features contributions from other chronically ill students and graduates, based all over the UK and covering multiple areas of study. Essentially, this is the book I was looking for during my own years of a student, and since I couldn’t find it back then, I wrote the blummin’ thing myself. Curious? You can find out more about this one in this recent blog post. Plug plug plug. Don’t mind me.
And there we have it: wonderful books by wonderful people. And also me. Have you discovered any stand-out chronic illness-inspired reads lately? I’d love to hear all about them in the comments below, or feel free to give me a nudge over on Goodreads!