Originally posted on Just Geeking by.

I reviewed this book as part of GeekDis 2022 an event discussing disability representation in pop culture from the perspective of the disabled and neurodivergent community.

Content warnings:
This book is the memoir of someone with a severe medical condition and therefore contains a lot of scenes at hospitals, and with medical equipment, including needles. There are scenes of medical negligences, sexual harassment by a medical professional, gaslighting and ableism.

In 2005, Jessica Taylor was an ordinary teenage girl, thinking about her GCSEs and having her first boyfriend. Then she started to get sick, a feeling of exhaustion that never left after a flu bug. She’s told by her doctor that she has ‘post viral chronic fatigue syndrome’ also known as myalgic encephalomyelitis. We’re told all these details from Jessica’s diary “Bug” which she started when she was fifteen years old. Gradually Jessica’s symptoms became worse, with her unable to attend school and having to face the reality that she won’t be able to return when a truancy officer visits to discuss other options. Her health continued to deteriorate until she ended up in hospital.

This is the start of Jessica’s battle with severe ME, which she refers to as the ME monster, an apt name for the condition that takes control of her entire body. She is unable to move, eat or communicate. It’s a reality for many people with severe ME, and as someone with ME I thought I was aware of what people with severe ME faced. How very wrong I was. While I knew the medical side of things, the symptoms, I had no idea of the appalling ableism, dangerous situations and horrific medical negligence that people with severe ME have to deal with.

Using the Bug entries that she wrote through coded messages with the help of her family, Jessica complied her experiences into her memoir A Girl Behind Dark Glasses. The change in Jessica’s voice over the course of her diary entries is particularly moving, showing the effect that the ME monster has had on her. Where diary entries are not available, she adds a commentary, filling in her thoughts from when events happened. The result is a complete account that is a difficult read, but a necessary one.

A Girl Behind Dark Glasses is an excellent read that is filled with hope and love as much as it is struggles. While Jessica has had to go through so much, more than anyone should and most of it not due to her illness, this is a chronicle of her fight and her successes as much as a testament to what she has been through.

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