This Is Body Grief: Making Peace with the Loss That Comes with Living in a Body by Jayne Mattingly
This summer, I was eager to find a book that could support me in my journey with syringomyelia. Luckily, I came across This Is Body Grief. I was instantly hooked and found it difficult to put down. The personal stories Jayne shares about herself and others with chronic illness deeply resonated with me. The model she provides for Body Grief gave me a framework and language to better understand what I have been going through.
Jayne, an eating disorder specialist and chronic illness and disability advocate, has personally experienced the hardships of living with chronic illness. She has been an avid dancer since she was young, and her flexibility is linked to hypermobility from the connective tissue disorder Ehlers-Danlos syndrome (EDS). Like some others living with EDS, she began experiencing debilitating symptoms at age 27 from what was eventually diagnosed as idiopathic intracranial hypertension (IIH). IIH is a neurological disorder in which a person experiences increased pressure inside the skull due to problems with the drainage of cerebrospinal fluid (CSF). During the past few years, she has experienced significant changes in her physical functioning and undergone several surgeries due to chronic illness.
Through her lived experiences with chronic illness and her professional expertise in mental health and eating disorders, Jayne recognized that there has been a gap in how we discuss and support people living in changing bodies. She emphasizes that Body Grief is a shared human experience. We all internalize societal messages from a young age about the ways our bodies should be and how they should perform. When our bodies begin to operate in ways outside of what is deemed the norm, Body Grief can set in.
What Is Body Grief?
Jayne, who first coined the term Body Grief, describes it as the profound sense of loss that we experience living in an ever-changing body. It can occur throughout our lives, due to reasons including but not limited to puberty, aging, menopause, chronic illness, mental illness, injury, and disability. Like the grief experienced from a loved one's passing, she reminds us that we ALL experience Body Grief at some point in our lives. It's a universal human experience that unfortunately can easily be dismissed when society places much of its value in people being able-bodied.
While often overlooked, the experience of Body Grief can be complex, messy, and non-linear. As Jayne emphasizes, it can't be fixed and needs to be worked through. She breaks the process of Body Grief down into seven phases: Dismissal, Shock, Apology, Fault, Fight, Hopelessness/Hope, and Body Trust. Fostering Body Trust is what helps us navigate each of the different phases.
How This Book Can Help Individuals with Chronic Illness
As I reflected on my own experience reading this book, I found myself thinking about the many ways Jayne's framework and suggestions could support others living with chronic illness. Here are just a couple that stood out to me.
Understanding and processing one's Body Grief: As I mentioned earlier, this book outlines seven phases of Body Grief. Jayne also provides coping strategies that people can try as they work through their feelings. From throwing a tantrum (yes, Jayne recommends this!), to reflection questions about one's relationship with their body, to exploring what it's like to not have a solution, there are many opportunities to engage with and process one's Body Grief.
Cultivating a more harmonious relationship with one's body: When living with a chronic illness, people often feel failed by their bodies. This can lead to what Jayne refers to as Perceived Body Betrayal. Anger and resentment can grow as individuals become increasingly alienated from their own bodies. Jayne offers an approach to courageously meet one's body where it is and cultivate the Body Trust necessary to feel more at home within it.
Ultimately, This Is Body Grief gave me language for an experience that I had struggled to make sense of on my own. Living with chronic illness can bring so many unexpected changes, losses, and complicated feelings about our bodies. Having a framework that acknowledges these experiences as a form of grief felt deeply validating to me.
I'm grateful I came across this book, and I hope others living with chronic illness might find the same sense of understanding and validation that I did. For anyone struggling with the challenges that come with living in a changing body, this book offers a different way of understanding those experiences and perhaps, over time, a path toward cultivating greater Body Trust.
Disclaimer: This review reflects the author's personal experience and opinions. It is shared for educational purposes only and is not a substitute for individualized medical or mental health advice, diagnosis, or treatment. Every person's situation is different, so please talk with your own healthcare team about your care. If you are struggling with grief, depression, or thoughts of harming yourself, call or text 988 to reach the Suicide & Crisis Lifeline (U.S.), or call 911 in an emergency.
