Living with Myalgic Encephalomyelitis (ME) changes everything — your energy, your identity, even your relationship with the world. It’s overwhelming, often lonely, and deeply misunderstood. One thing that has helped me most is reading. Books have empowered me to challenge dismissive doctors, understand my symptoms, and feel less alone. I want to share some of the most impactful books I’ve read — ones that gave me both practical tools and emotional support.
If you’ve recently been diagnosed, are struggling with symptoms that no one seems to take seriously, or just want to learn more about how others live with ME, I hope this list brings comfort, courage, and clarity.
Living Well With Endometriosis by Kerry-Ann Morris
This book came into my life when I was exhausted by years of being told my severe abdominal pain was “just IBS.” I knew in my gut it wasn’t — and when I found this book, I finally felt seen. Kerry-Ann Morris writes not as a detached expert but as a fellow sufferer, and that makes every page more powerful.
Why this book matters:
Written by a patient who understands the complexity of endometriosis
Helps you track symptoms and advocate for proper diagnosis
Offers guidance on treatment options and lifestyle strategies
Reading this in the bath during an extremely bad night was a turning point. I brought the information to my GP, and within weeks, I was diagnosed by a specialist. If you suspect your symptoms might be more than IBS, start here.
Atomic Habits by James Clear
This isn’t an ME-specific book, but it’s one I think every spoonie should read. James Clear offers a fresh, manageable way of forming habits, especially useful when your energy is limited.
Why this book matters:
Introduces “habit stacking” — a game-changer for low-energy days
Helps shift from all-or-nothing thinking to small, sustainable wins
Empowers you to reclaim a sense of progress and control
I often use his 5- or 15-minute rule: do what you can, then rest. It’s how I still feel like “me” on days when energy is scarce.
The Puzzle Solver by Tracie White and Ronald W. Davis
This emotional rollercoaster tells the story of Whitney Dafoe and his father’s fight to uncover the science behind ME. It’s heartbreaking and hopeful — and it reminded me how much our loved ones go through too.
Why this book matters:
Tells the personal story of ME through a father-son lens
Sheds light on medical neglect and the quest for answers
Validates the severe toll this illness takes on both patients and families
This book made me cry more than once, but it also reminded me why we must keep pushing for better treatment.
A Life Worth Living by Dr Michael Midgley
Though it was published in 1995, this book remains deeply relevant. Dr. Midgley lived with ME for 35 years and brings both medical insight and heartfelt empathy.
Why this book matters:
Written by a doctor who had ME, making it both clinical and compassionate
Shares stories from real ME patients to show the broad spectrum of experience
Offers guidance for sufferers, carers, and even medical professionals
It gave me the language to explain what I was experiencing in a way that made people listen. A timeless read.
Science, Politics and ME by Dr Ian Gibson and Elaine Sherriffs
This powerful book dives into the science, history, and shameful politics surrounding ME. If you’ve ever wondered why we’re still being dismissed, this book lays it bare.
Why this book matters:
Breaks down the science behind ME in understandable terms
Explores why ME has been neglected by medical systems
A rallying cry for better funding, research, and representation
It’s not always an easy read, but it’s an essential one, especially if you’re an advocate or want to understand the systemic failures that got us here.
Living with M.E. by Dr Charles Shepherd
This was one of the first books I ever read about ME, and it still stands out. Dr. Shepherd is both a medical expert and advisor to the ME Association, and this book covers everything from symptom management to employment advice.
Why this book matters:
Medical explanations written with clarity and compassion
Deep dive into the physical, psychological, and social effects of ME
Offers practical advice for pacing, symptom tracking, and accessing support
If you only read one book about ME, let it be this one.
From Grange Hill to Bipolar and Back by George Christopher Wilson
While not ME-specific, this raw, funny, and deeply moving memoir on mental health resonated so strongly with me. George is a friend, and his bravery in sharing his journey through bipolar disorder is extraordinary.
Why this book matters:
Powerful personal story of mental health and resilience
Honest insights into how chronic illness impacts relationships
A beautiful reminder that we never really know what others are going through
Mental health matters — especially when you’re chronically ill. This book is for anyone who has ever struggled with their mental wellbeing.
🌟 Your Turn: What Books Have Helped You?
I’d love to hear what books have helped you on your ME journey. Drop your recommendations in the comments below — I’m always looking for new reads and would love to feature some of your favourites in a future post.
If you haven’t already, please consider signing up for my newsletter and subscribing to my YouTube channel. I’ve found so much joy in sharing my voice and connecting with others, and every like, comment, and subscription genuinely helps get these messages in front of more people.
Let’s keep lifting each other up.
💬 Join Our ME & Disability Support Communities
Whether you’re looking for a supportive chat, resources, or advocacy work, here are some of the communities we have set up.
🧡 Friends with ME (North Liverpool)
Join the Facebook Group
🌈 The Ability Alliance
Facebook
Instagram
👨👩👧 ME Carer Community
Facebook
Instagram
🗣️ Talk with ME
Facebook
Twitter/X
Instagram
Individuals with ME often feel isolated due to the misunderstood nature of the illness. A Myalgic Encephalomyelitis community led by those who understand the daily struggles firsthand can create a safe space where members feel understood, validated, and empowered by sharing their experiences with others who truly comprehend their challenges.
Need someone to talk to? You’re not alone. Reach out anytime via the email above.
With love and strength, Alisha ❤️
P.S. All Amazon links are affiliate links, which means I’ll earn a small commission if you use them—it doesn’t cost you anything extra, and it helps support my website and YouTube channel.
If you have any questions about this or any of the information on this page, please email me at ask@alishawhittam.com.
