Disabilities, whether mental or physical, have no bias in who they reach and affect. Millions experience the difficulties brought on by a disability, and no one journey is ever the same. We have compiled some of our favourite stories of resilience through disability, including a battle with Hidradenitis Ssuppurativa, a bestselling YA author’s testament of OCD and a candid collection of memories from a disabled child’s parent exemplifying the power of care and communication.
HS Warrior: One Woman's Ongoing Battle with Hidradenitis Suppurativa by Pen W
HS Warrior is a book about one woman’s battle with Hidradenitis suppurativa, and its devastating effects on her life. HS is an incurable skin condition. It often includes constant pain and limited mobility which has driven many to depression. While HS can be difficult to diagnose, early diagnosis is important. In spite of this, it took me over ten years of suffering to finally be diagnosed with HS which is, luckily, only at stage 2.
Pen is in the later stage of HS and the stories in this book highlight that struggle. The story that hit the hardest for me, and for most people with HS, is The Robber. It compares HS to a robber that steals her ability to make a living and interact socially. Since HS is yet to be recognised by DWP (Department for Work and Pensions), it does not support those affected. One quote that was especially affecting is: “there is a lack of compassion by those in the medical profession, many of whom don’t know what HS is or how to treat it.” That is where the importance of this book lies, in its mission to bring HS into the light for those who may be going through this, and also for those who want to understand what their loved one is going through.
Portions of the proceeds from book sales and merchandise sales are dedicated to establishing the HS Fund. Its mission is to assist those devastated by HS and to support research for a cure. You can purchase the book here.
Turtles All The Way Down by John Green
The wildly popular YA fiction author John Green once described his own OCD as “an 'invasive weed inside my mind.” And it is his keen, personal observation and striking details that make his 2017 novel - Turtles All The Way Down – an incredibly realistic and powerful conversation on Obsessive Compulsive Disorder. While he admits his struggles with OCD have been a negative point in his life, he turned those experiences into inspiration for a novel which portrays a main character who suffering from a devastating mental illness.
Turtles All The Way Down follows 16-year-old Aza as she is mourning the death of her father while also attempting to manage her OCD. Her days are plagued with the pain of her loss, constant intrusive thoughts that interfere with day-to-day life and conflicts in her relationships with family, friends and love interests. To distinguish these, Green italicises Aza’s intrusive conversations, a stylistic technique which lends a stark contrast on the page and clearly portrays the sides of her battling mind.
Green’s experiences of OCD since childhood lend a realistic and exacting tone to his content. He admitted that in order to write this book successfully, he:
“needed a place where I could make a connection with Aza in order to write about her. And that's long been one of the kind of focuses of my particular version of obsessive-compulsive disorder.”
Green’s Aza is particularly hyperfocused on bacteria and germs, believing that a single exposure can turn into a deadly disease, a feeling which Green admits was inspired by his own fears. Green also describes other debilitating symptoms of OCD, particularly the sensation of spiraling – which Aza suffers multiple times throughout the novel – as a slippery slope. He writes that “if you follow it inward, it just keeps going forever. It just gets tighter and tighter. And it never actually ends. And that's kind of how Aza experiences her thoughts when she gets stuck into this kind of looping, turning, twisting series of thoughts.” In typical John Green fashion, this book’s cover design and title lends no clue as to the type of content within it. Instead, it strikes with bright colours and an air of mystery that draws in readers who may not typically read a book about OCD. Those with OCD, and those who feel a connection to the human condition through a sense of empathy, will relate heavily to Aza and her journey through both the loss of her family, and the loss of control in her life.
Know the Night: A Memoir of Survival in the Small Hours by Maria Mutch
While we often read from the perspective of those suffering from a disability, it is refreshing and truly insightful to read from the eyes of a carer. The struggle is presented in a different light: the experiences seen from another angle. In Know the Night: A Memoir of Survival in the Small Hours, Maria Mutch – an accomplished writer and photographer – is the mother of a son diagnosed with Autism and Down’s Syndrome. This honest account follows the memories of those long nights spanning from midnight to early morning when she would stay awake and engage – alongside her son – the hardships of this disease.
At night, she is awoken by her son’s attempts to communicate with and experience the world around him, often with clapping and shrieking. Other times, she recalls moments of difficulty with communication, intellectual capacity and even hygiene. Her son’s night-time stimulus causes anxiety to form deep within Maria, to the point that she lays awake at night waiting for his call. As a reader, one experiences the fear, isolation and the unknown of the life that Gabriel leads, as well as the fear, fatigue and feelings of uselessness experienced by Maria.
What makes this memoir so difficult to read is also what makes it the compellingly beautiful story that it is: the heart-breaking account of a mother desperate to provide a happy, content life for her son who sees the world in a vastly different way, and who so richly deserves the compassion and understanding that is lovingly given by his mother. This story, told with nothing but honesty and love, highlights why one of the greatest balms to any disability is compassion.