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A Girl Behind Dark Glasses

Synopsis

From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M. E. Monster. The severest form of a neuroimmune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage schoolgirl. This true story follows her path as she ends up living in a hospital for years with tubes keeping her alive.

This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice-activated technology diary called “Bug” that enables her to fulfil her dream of one day becoming an author. It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.

Authors Biography

At the age of 15, she became acutely unwell with an illness called Myalgic Encephalomyletis (M.E). She was continuously hospitalised from 2006-2010, suffering with the most severe form of the condition. This included her being bedridden, unable to move, speak, eat and more. She began to write in her mind, and when finally able to speak again, she began to write through her audio diary ‘Bug’. Jessica released her debut bestselling book ‘A Girl Behind Dark Glasses’ in 2017.

Reviews

‘I found the book inspiring and could not put it down’ – Amazon

‘I first came across Jessica in the film Unrest and when I found this book I wanted to learn more about her. I found this book really interesting and inspirational’ – Goodreads

‘A fascinating and moving account of what it feels like for ordinary daily existence to become a struggle’ – The London Magazine

‘It’s a story of love, family, friends; of hope, strength and courage’ – Waterstones

Leave a comment about this book:

87 Comments

  1. Fantastic book couldn’t put it down I was one of Jessica carers at burrswood

  2. I cannot under estimate how important this book is. I have severe m.e, like Jessica. The general public have no idea what people with “hidden” disabilities go through. I often think they are called hidden, not just because we don’t necessarily look ill, but because we ourselves are hidden and largely forgotten

  3. This is a very moving account of the incredible difficulties that have been part of Jessica’s life since she contracted “the ME Monster “as she puts it. As her mother, I know that my very inspirational daughter deserves all the praise & recognition that this book is receiving. The disease requires far more research & far greater understanding within society, especially in the public & medical sector.

  4. What a fantastic and inspirational book giving great insight into a widely misunderstood illness. This young lady shows such strength and heart. A truly moving story.

  5. Amazing book that describes what it’s like to live with ME. I have severe ME and feel ignored, invisible and isolated. The symptoms of ME are so misunderstood by the community and much of the medical profession. We are truly let down every day. This book goes a long way to help educate.

  6. Jessica is a warrior of this nasty ME monster. She is an inspiration for those of us that suffer from ME and she gives us hope. You are amazing Jessica and I loved your book.

  7. A good and very important book. The general public have no idea what people with “hidden” disabilities go through. A real insight into a proportion of the population that live a hidden life and are largely forgotten about. I hope this is a victory in many ways

  8. A rare insight into existing with Severe M.E. A haunting read.

  9. A truly remarkable story about an inspirational young lady. A rare insight into such a terrible disease and one which the public need t9 be aware of. Deserves an award.

  10. Awe-inspiring lady with such inner strength in her writing that transcends every page. Her book encourages anyone reading her teenage experiences of being diagnosed with M.E. to take each day as it comes, try harder, be more grateful. She’s a true inspiration.

  11. Jessica’s courage and frank, moving account of her illness are inspiring to anyone struck by severe illness, but especially the young and those struggling with the medically neglected illness ME.

  12. “I have bought this book as an ebook. I started to read it and I could not put it down. I read it through in one shot. The book grips the reader from the start. One can experience what Jessica is going through to the point that it hurts just to read it but I could not put it down. Jessica describes what happened to her in the 4 years of her life which she had to spend in hospitals with painful honesty. She allows you in her personal life and although her very painful experiences shock you, her indomitable spirit shines through. She develops her own techniques to deal with the unbearable pain poor treatment and abuse she had to deal with. One can really experience the heartbreak and sacrifices of her close and supportive family and some friends who have to deal with such a sick child where her illness is not understood by medical professionals and where her treatment at times is wrong and is making her worse.
    Jessica’s incredible courage and determination to try and get better shines through. She is not a victim she is a survivor and a very brave ME warrior. She manages to stay positive even with all the odds against her. This book can be as influential as a book as Unrest was as a movie for the ME Community. Thank you Jessica. Not only have you realised your dream to write a book but you have written an amazing powerful and well written book which should be valued not only in the ME community but for everyone that appreciates reading a good well written book. Please buy it give it as gifts to other people. You will not be sorry. I am looking forward to the next book

  13. I could not put this book down once I started it. As a fellow sufferer, I could relate to so many points. Fantastic read by a fantastic & very very strong lady. Thank you Jessica. Xx

  14. I too have ME, and so I listened to the Audiobook version (which is delightfully read in a voice that sounds remarkably like Jessica’s own).

    In “A Girl Behind Dark Glasses”, Jessica doesn’t shy away from describing the darker elements of the disease and of the care she received, yet she still is quick to highlight moments of joy and the people in her life who made a real difference. Throughout it all, Jessica’s personality shines through as she deals with things no-one should have to face.

    Simply excellent. Read it.

  15. A brilliant piece of writing. Jessica has managed to portray a warts and all account of an experience many would struggle to discuss let alone write about with such pragmatism. The author maintains a perfect flow to the book despite using diary extracts and remains factual throughout. I don’t know how anyone could write so beautifully about such a traumatic experience. Really talented author.

  16. Thank you all for the lovely comments and for voting for A Girl Behind Dark Glasses it means the world to me and my family.

  17. This book is remarkable in so many aspects. I think truly hope this book will become a part of the school curriculum

  18. A heart–touching bio that reaches out to anyone who knows someone;or themselves has been side-tracked from a normal life w/a little known mysterious illness. In the voice of this author she tells of her journey. I could not stop reading through the very real dramas & traumas & her relationship w/family who supported her w/their love & care. Romance is ever present, surprisingly, as she opens her heart to this possibility There is hope & inspiration discovered from her relentless determination to find answers & then help others through her personal path. A life-changer!

  19. I gobbler this book up in one afternoon because it was such a gripping story and so vividly and compellingly told.

    Jessica’s spirit and tenacity in facing the suffering of severe chronic illness, isolation for years in hospital and later abuse at the hand of medics is both shocking and utterly inspiring. This is a must-read memoir for absolutely everyone

  20. I am so impressed by this author. She uses humour to describe her distressing situation. Her courage shines through. I have recommended it to friends who are rooting for our granddaughter who is suffering from severe ME to start getting better. Congratulations on a wonderful book Jessica/Jay!

  21. Thank you for writing this book, Jessica, & for shining the spotlight on the neglected but severely disabling disease of Myalgic Encephalomyelitis. Even those with mild ME can experience up to 50% loss of function. That would be considered serious in any other disease. 25% of ME patients are at the severe or very severe end of the spectrum. They exist in darkened rooms, ‘behind dark glasses’, needing round-the-clock care, & ignored by governments, social services and medical systems that simply don’t care. This is a worldwide phenomenon for sufferers of ME. Research funding for this debilitating illness is abysmal, globally.
    I sincerely hope that through people reading this book, positive changes will be brought about for the #MillionsMissing.

  22. This is a heart breaking book to read and I can only begin to imagine the heart ache Jessica’s family must have gone through during the horrific time. I have ME but have not suffered anywhere near as severely. Jessica I think you are a very brave and amazing young woman. Well done and thank you for sharing your story.

  23. My wife has ME and this book is an eye opener for many people who dont really know about this horrible disease.

  24. I have a daughter of Jessica‘s age who suffers from severe ME too.
    Very touching and so true, how she describes the typical sort of life young patients are forced to lead by that terrible disease!

  25. I read this book and it was very good best book I’ve read in ages

  26. Incredible read. Moving and shocking. An unbelievable battle which brought tears to my eyes. Jessica you are inspirational. Once you pick up this book you will find it very hard to put down.

  27. Wonderful book written by a courageous young woman who lives with a severe form of ME, and has great insight into the challenges and unspoken pain that go along with such a debilitating illness. Jessica is inspirational.

  28. As a parent of a child with this illness it is a scary place to be. This is a well written, incredible story. Jessica is a wonderful ambassador, advocate, warrior and hero for this misunderstood and horribly debilitating condition. Thank you so much for writing about your experiences.

  29. ME/CFS is a devastating illness, and one that needs to be as widely spoken about as other neurological and autoimmune diseases. This book is paving the way.

  30. What a amazing book.

  31. This is a well wrote amazing story, living with me/CDs myself, this book has it down to a tee, this is paving the way for more to come x

  32. Thank you Jessica for telling your story you have given so much in your fight I am in total awe I could not put it down I know I will pay the price for this having servere M.E myself but it was worth it you inspire teach advocate but most of all you are best example of the M.E warrior. And can not wait for you to hold your baby in your arms with so much love to you and your family. Jan Inman

  33. A very touching read and a true eye opener in to the world of ME

  34. Amazing narrative of a delightful woman’s journey with a horrible and often misunderstood disease.

  35. Shocking how absent was protection of Jessica against abuse when she could not speak or advocate for herself. All medical and ancillary staff caring for people with ME should read this book!

  36. I could not put this down. Jessica shows tenacity and bravery in telling her story about her life with M.E. and how she was mistreated and misunderstood by the medical profession. As a former nurse and lecturer in nursing I found the book a harrowing read. Angry at the failings so obviously highlighted. As an M.E. sufferer myself I can also concur with many of Jessica’s opinions and findings. I think all health care professionals should read this book, it would teach them so much about life in hospital, and how not to treat your patients. With regards to M.E. it is so important that those of us who are unfortunate to have this condition use whatever skills and opportunities we have to tell our story, in order to highlight to the world that we will not be forgotten, we deserve the same treatment, research and services as everyone else using our NHS, and we can only change M.E. treatment by raising awareness in the public arena. Thank you Jessica for your courage.

  37. Wow, such a brilliant read giving clear insight into this awful disease. Every health care professional needs to read this book. We need to end the ignorance and stigma around M.E., and this book is doing its bit in order to raise awareness. Thank you Jessica for sharing your story.

  38. A story that needs to be told, about a disease that has been ignored for too long. Thank you, Jessica!

  39. An amazing young woman telling a story that is both heartbreaking yet incredibly insipiring

  40. Inspirational!

  41. What a story! So well written.

  42. A brilliant read. Well done Jessica for telling a story that needs to be told .

  43. Good Luck Jessica xx

  44. Inspirational and well written . Worth reading .
    Hope you win Jess you deserve it .

  45. Such an inspirational young lady and so brave. I could not put this book down

  46. Amazing Book wrote from Truthfulness and Compassion of an illness that nobody would want to live in no matter your age but there is millions who do just that if live is even the right word.

    Well done Jessica yes this needs shouting from the rooftops good luck lovely xxx

  47. An important book.

  48. Thank you for writing this powerful story.

  49. I could not put this book down .i am a survivor of 37 years with CFS .thanks to Jessica for sharing her story.she deserves to win, its a very important book ..needs to be recognized

  50. I recorded the audio book version and became completely engrossed in this difficult, fascinating account of Jessica’s experiences. And it was a pleasure to meet her finally at the launch event.

  51. What a truly remarkable person you are Jessica, to write such a truthful, harrowing, readable book, about this extremely painful disabling illness, when being so severely ill. This book should be read by every GP and Medical Consultant, it should be in every GPs waiting rooms and Hospitals.
    Thank you so much for your true courage and writing this outstanding book. Much love. Linda.x

  52. Such committment to telling her story. Very, very inspiring for sufferers.

  53. Jessica is such a courageous, amazing and inspirational young lady. I couldn’t put her book down.

  54. M.E./ CFS is a very debilitating illness not visible to the naked eye. This book can really help people to understand.

  55. Amazing insight into an ongoing struggle for survival. Determination shines through without a doubt.
    Well worth reading.

  56. Inspirational lady who deserves so much more. I have the pleasure of knowing this lovely amazing lady and I couldn’t be more proud. Fantastic achievement and to win this prize will be even more of an achievement.

  57. ME is invisible. Our suffering is invisible; yet our spirits are lifted by this incredible lady who does not give up.

  58. I am as severelly ill as her. I put laying down all my effort/strenght even just to vote and cry for help! I am ” decades severelly ill and declining and still declining further. I do not know how long I still will be alive.

  59. My wife has ME. Jessicas book is a real eye opener. I have met Jessica personally and has the utmost respect for her and for the incredible book she has written

  60. Great book

  61. Such a heartbreaking and amazing story. Severe ME is a monster that people need to know about.

  62. Important book letting public know about the often hidden illness ME and just how severe it can be.

  63. ME is unpredictable, painful and debilitating. This book will help bring awareness to this life altering illness.

  64. Myalgic Encephalomyelitis is a worldwide health crisis. Anyone can catch this devastating disease at any age.

    Research funding is needed to protect those who aren’t yet ill and to help those who are ill to recover. This book shines a light on this serious problem.

  65. A very beautiful book

  66. I, my life partner and my granddaughter have this damn disease. Yes, it’s a disease, it’s very real, and you could be the next person to get it. Jessica has raised awareness with her profound writing of her experiences, and now we need all of you to contact whomever in your country can be instrumental in demanding more research funding and help for patients so profoundly disabled by the devastation of Myalgic Encephalomyelitis.

  67. Tnxxx and take care ❤️

  68. A very necessary book.

  69. At last, I have been waiting for a very long time for this. Thank you

  70. Truly a courageous young woman who has shared her insight into her disabling and limited world. She, through her writing has found a way to release herself and open up to others sharing her experience which will hopefully reach many people.

  71. Suffered with this disease myself for over 30 years
    Thank you for being so strong to persevere with writing this book! So much ignorance about this REAL condition!

  72. This book shows the stark reality of living with severe ME. Thanks for sharing your experience with us.

  73. I love this book 💙. I’s a honest and true story about a very complex illness.

  74. Thank you Jessica for this book, it’s the truth about a really horrible illness that a lot of people don’t even believe is real. So many of us are suffering, neglected, abused and disbelieved, it has to stop. We need more people speaking up and out like Jessica has and does, they can’t ignore a million voices, like they ignore just a few struggling ones who keep being silenced. United we stand (or sit if we’re having a bad day :P) it’s time for the abuse, neglect and horrific treatment of people with these conditions ends. We suffer enough every day as it is. Thank you Jessica for sharing your story and raising awareness for all of us who are yet to find our own voice and the courage to stand up and fight. Lots of love to every single one of my fellow sufferers. We’re warriors!! Don’t ever give up.

  75. Jessica is a brave young lady and her story taught me to value my life even more.

  76. Comment

  77. This book is an amazing achievement and tells well a story that needs to be told.

  78. A brilliant book, giving an excellent insight into the difficulties this lovely young lady has had to endure. She has been an inspiration many to others and her hard work and determination should never go unrecognised. Her story has taught me personally to appreciate everything and everyone around me that little bit more, it has also reminded me how life should not be taken for granted so lightly and to appreciate each and everyday and value even the smallest things.

  79. A book that shows why you should never give up.
    A book also that should be read by every training doctor and nurse. X

  80. This is such an important and well written book and highlights the ignorance of the medical profession in treating the disease to the detriment of ME patients. I have suffered with ‘the monster’ for 19 years and my 24 year old daughter bedridden by it for the past 2 years so hugely admire Jessica’s amazing strength in conveying her experiences and always with such optimism and humour. A special young lady indeed!

  81. To me this book describes FND not ME or CFS. It is an amazing book and is helping me through my darkened days. I have a chromosome abnormality but this book still gives to hope to fight on.

  82. I was interested in the subject of her illness, and when I read the book I was gratified that it was so very well written. An excellent read.

  83. A very moving book and with detailed insight into the life of Jessica and her fight with the M.E. Monster. I feel very privileged to have been able to buy this book and get to know Jessica through her charity Share a Star which was born from her bed….her own tenacity is testament to her achievements so far….

  84. A very moving story, excellent read.

  85. The name chronic fatigue syndrome makes people believe that it is all about feeling tired. Nothing could be more wrong. This disease really should scare the shit out of you. If you get it, your life ends. But you’re still breathing.

  86. I was so happy to find this on Audible. I’ve listed the whole way through at least 3 times already. The feeling that you aren’t alone in your battles is a powerful one. Thankful for the author and over the moon that she’s getting the recognition she very much deserves <3

  87. A truly amazing girl,as an M.E. sufferer, I am in awe of Jessica managing to find the strength to share the reality of this illness that takes over your life .

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