Invisible Disabilities Week: October 16-22

October 13, 2022 | Denise

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October 16-22, 2022 is Invisible Disabilities Week. This is a week intended to raise awareness of invisible disabilities and the barriers people living with this type of disability experience. 

But what exactly does the phrase "invisible disability" mean? Perhaps a more accurate description is disabilities that are not immediately obvious. Most often, this refers to chronic illnesses and pain conditions, but some people also include learning and developmental disabilities such as dyslexia and ADHD. In general though, they are disabilities that do not typically have visible symptoms and may not require any assistive devices. A wheelchair or white cane is obvious; a migraine or chronic fatigue is less so. But like other members of the invisible disability community, I personally am starting to prefer the "not obvious" phrasing over the more common "not visible." Anyone who spends time with me will begin to spot the indicators of my illness. For example, I'm always looking for somewhere to sit down, I have difficulty climbing staircases and, on really bad days, my speech is slow and I struggle to find the right words. 

In honour of Invisible Disabilities Week, I've put together a list of biographies and memoirs of people with invisible disabilities. As you look through the list, you may begin to notice some common themes. The experiences that these authors share are not just about the physical and mental realities of coping with their conditions. In fact, the biggest challenges are often in medical and social settings. They have encountered gaslighting and mistreatment from doctors, as well as difficulties accessing social and family support. Even just getting a proper diagnosis can be a years long process. It took me 11 years to get mine!

 

Cover image of What doesn't kill you : a life with chronic illness-lessons from a body in revolt

What doesn't kill you : a life with chronic illness-lessons from a body in revolt by Tessa Miller

Active, healthy twentysomethings don't expect to become seriously ill for no apparent reason. But that's exactly what happened to Tess Miller. What started as stomach pain grew into a multi-year struggle with infections, hospitalizations and debilitating agony, finally culminating in a diagnosis of Crohn's disease. Like the others on this list, Tessa's story doesn't end there. She was then faced with accepting the reality that she will never get better. Her book sheds light on the highs and lows of living with a chronic condition. 

 

Cover image of Pork belly tacos with a side of anxiety : my journey through depression, bulimia, and addiction

Pork belly tacos with a side of anxiety : my journey through depression, bulimia, and addiction by Yvonne Casteñeda

Growing up with Mexican and Cuban immigrant parents, Yvonne Casteñeda has felt familial and cultural pressures to achieve perfection her entire life. Matters only got worse when puberty hit and her family began commenting on her body size. She became obsessed with her weight, developing Bulima Nervosa along with depression, anxiety and addictions. In her memoir, Yvonne shares her struggles to balance the expectations of those around her, as well as the advice from her abuela in Mexico that helped her find inner peace.

 

Cover image of The puzzle solver : a scientist's desperate quest to cure the illness that stole his son

The puzzle solver : a scientist's desperate quest to cure the illness that stole his son by Tracie White and Ronald W. Davis

Watching your previously healthy child become seriously ill and waste away would be a nightmare for any parent. For Ronald Davis, a world renowned geneticist, it was also a call to action. Ronald's adult son Whitney became severely ill in 2009 and was eventually diagnosed with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS). As the disease progressed, Whitney became completely bedbound, reliant on a feeding tube and unable to tolerate sound or light. This went on for years with little hope of improvement. The Puzzle Solver follows Ronald's research into this complex disease and his desperate attempts to save his son.

 

Cover image of Ask me about my uterus : a quest to make doctors believe in women's pain

Ask me about my uterus : a quest to make doctors believe in women's pain by Abby Norman

Abby Norman has endometriosis. It took her years of fighting the medical system to get this diagnosis. Along the way, she was forced to drop out of university, endured excruciating pain and was repeatedly dismissed by doctors who told her the pain was all in her head. Many of these doctors did not take her seriously unless she brought her boyfriend to appointments so he could backup up her claims. Abby's experience with medical misogyny is not unique. She is now a patient advocate who works to ensure that fellow patients, especially those seeking gynecological care, receive better care than she did.

 

Cover image of The collected schizophrenias : essays

The collected schizophrenias : essays by Esmé Weijun Wang

Esmé Weijun Wang's collection of essays explores her experiences with schizoaffective disorder. She acknowledges that this is not a simple, clear-cut diagnosis and that there is still a lot of disagreement in the medical community about mental health diagnoses and treatments. In her essays, Esmé discusses her attempts to hide her condition, the barriers to accessing higher education and the dangerous realities of institutionalization.

 

Cover image of Backbone : living with chronic pain without turning into one

Backbone : living with chronic pain without turning into one by Karen Duffy

Karen Duffy was working as a model, TV personality and actor in the 1990s, until her life changed drastically. In 1995, she was diagnosed with sarcoidosis, a painful disorder that causes inflammatory cells to grow throughout the body. In Karen's case, it developed in her brain. Now living with chronic pain, Karen works as a patient advocate, recreational therapist and hospital chaplain. In Backbone, Karen is equally hilarious and serious as she shares her hard won tips for living a good life while in pain.

 

Cover image of So-called normal : a memoir of family, depression and resilience

So-called normal : a memoir of family, depression and resilience by Mark Henick

As a child, Mark Henick probably didn't expect he would grow up to be a prominent Canadian mental health advocate. But a single night when he was a teenager changed everything. His depression and anxiety had worsened to the point where Mark found himself standing on a bridge, contemplating suicide. A kind stranger talked him down and saved Mark's life. In his deeply touching memoir, Mark documents his difficult childhood, his ongoing struggles with mental illness and his path toward wellness.

 

Cover image of Sick : a memoir

Sick : a memoir by Porochista Khakpour

Like many of the other people on this list, Porochista Khakpour spent many years struggling with a mystery illness and battling the medical system for a diagnosis. She was eventually diagnosed with late-stage Lyme disease but that was after several hospitalizations, an addiction to doctor-prescribed medication and thousands of dollars in medical bills. Her memoir is a powerful look at what it means to be sick.

 

Cover image of Shut away : when Down syndrome was a life sentence

Shut away : when Down syndrome was a life sentence by Catherine McKercher

The last book I want to highlight features a different kind of invisible disability. The other disabilities on this list are considered "invisible" because they are not obvious at first sight. In contrast, this person's disability was made to be invisible. He was hidden away. In Shut Away, Catherine McKercher tells the story of her youngest brother Bill, who was born with Down Syndrome. When he was just two and a half years old, Bill was institutionalized at the Ontario Hospital School in Smith Falls. Catherine discusses the social and medical pressures families felt to send away their children with intellectual disabilities, as well as the neglect and abuse that many residents experienced in these institutions. Bill passed away in 1995, but the last institution for people with intellectual disabilities in Ontario was not closed until 2009. For more on this part of Ontario's history, check out Broken : Institutions, Families, and the Construction of Intellectual Disability by Madeline Burghardt.


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