Jayne Mattingly on making peace with body grief

A Q&A with the author of "THIS IS BODY GRIEF: Making Peace with the Loss that Comes from Living in a Body"

In THIS IS BODY GRIEF: Making Peace with the Loss that Comes from Living in a Body (Penguin Life; on sale: March 18, 2025) disability advocate, recovery expert and eating disorder helping professional Jayne Mattingly shares stories from everyday people in the throes of Body Grief as well as her own journey as a newly disabled and chronically ill woman.

Jayne speaks to the Body Grief we all experience—from puberty to menopause to infertility, to pregnancy loss, gender dysphoria [a medical term describing distress due to a mismatch between one's gender identity and assigned sex, and the distress associated with it], disability and chronic illness, to injury—and teaches us how to better understand our feelings around our bodies. Through her personal experiences and the stories of others, Jayne illustrates that our body has not and will never be against us. As Jayne writes in her book, “Body Trust is a two-way street: in order to trust our bodies, our body needs to trust us to take care of it, be kind to it, and nourish it in all ways. This is a crucial component in the journey toward Body Trust, which is a journey without end.”

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Tell us more about your book This is Body Grief. What was the impetus for writing it, and what do you hope readers take away from your book?

I would be sitting with my clients who lived with eating disorders, and as we processed what their lives would look like in recovery, we embarked on the journey of what I call “body grief,” or making peace with the loss that comes with living in a body. It was terrifying, heartbreaking, devastating, exhilarating, and freeing to imagine a life beyond the one that was once promised to them. It was then that I began to speak to friends, family, and colleagues about the experience of grieving our bodies, and everyone seemed to take a unanimous exhale and say, “Yes, I feel that, too!” From then on, I continued to research and study body grief on both a personal and professional level.

There were many moments in my own life where body grief applied, granted that magnified even more so in the last six and a half years when I was in and out of the hospital. My wedding day is top of mind as a significant body grief moment. I always pictured that special day on the beach, in a white dress, looking a certain way. Yes, I was that little girl who had her entire wedding planned out when she was just 10 years old, and let me tell you, I never planned to be a disabled bride, and yet here we are! I was relying on my walker as I danced the night away with friends and family (still grappling with the internalized ableism that I carried from years of living in a non-disabled body), and that is when I whispered to myself the words (and it sunk in the deepest) “This is body grief.”

I hope my readers feel that same therapeutic exhale. Maybe you’re not as quick or as strong as you used to be, or an illness has wrecked your sense of self, or no matter what diet you follow, you still feel uncomfortable in your own skin. So you go to war with your body for what it can no longer do—when the truth is, our bodies are always on our side.

How would you define body grief?

Body grief is universal: if you have a body, you’ve experienced body grief. It’s the sense of loss that comes with living in an ever-changing body. When our body changes in ways that seem beyond our control and no longer feel like our own. When we realize our body will no longer “get back” to how it used to be or look, and the truth of this unravels our sense of identity, this is body grief. From menopause to injury, disability to chronic illness, puberty to food allergy, racial inequity to gender dysphoria, infertility to loss of pregnancy, the experience of motherhood and mental illness, body grief is everywhere we have just never been given the language or tools to help us cope with and burn out of said grief. As much as Body Grief is universal, it is also incredibly personal. Everyone’s story is unique, and the grieving process is non-linear and ongoing process.

You talk openly about being newly disabled and chronically ill, can you share more about your struggles with that transition?

“Love your body for what it can DO, not what it looks like!” I used to shout that from the rooftops at events for body positivity. About 6 years ago, I was considered “healthy” and non-disabled. I’d recovered from my lifelong eating disorder and had made it my purpose to help others in their struggles with body image and disordered eating. I was running my own business and was graduating with my Masters in Clinical Mental Health Counseling when one day I found myself in a Barre class, and I lost my sight and was in an indescribable amount of pain. Out of nowhere my body just stopped working. After several trips to the ER and weeks upon weeks of dismissal from doctors, I was finally taken seriously and rushed to the hospital, where I was diagnosed with a rare neurological disorder called Intracranial Hypertension (IIH). It was this diagnosis that led me to my first two brain surgeries. I was catapulted into a new life, a new identity. It was a whirlwind of living in and out of the hospital, and after 19 brain and spine surgeries and a total hysterectomy, I proudly identify as a disabled woman, relying on my wheelchair, rollator, and service dog.

The grief I felt when my body could no longer “do” was suffocating. At the time, I had no clue how ableist that sentiment was. For years, I have been advocating for individuals who were struggling with eating disorders and body image to love their bodies for what they could “do,” but what happens when they stop doing it? Oh, the privilege we have as non-disabled folks, and we don’t even know it! I was recently speaking to another newly disabled friend, and they said something to the effect of “sometimes I feel our body grief is so much heavier because we know what life is like without a disability.” I understand that sentiment; it is still reaching from this place that white, non-disabled, cis-gendered is what is the “ideal normal.” Instead, I see all body grief as equal. Would we have such heavy grief if the world were more accessible? Would we have such heavy grief if we had more body autonomy as women? Are women even equal in color and ability? So, being “newly disabled” has been one of the biggest grievances and most significant gifts I’ve received in my life.

What are the seven phases of Body Grief?

Each phase of body grief is about identifying where you are in the grieving process, and learning how to use skills, tools and lean into healing on your journey.

1. Dismissal: Here we are in denial about what is occurring, granted this dismissal occurs not only internally but also externally from others like family, friends, doctors. It may sound like “I’m fine” or “Everything looks great to me!”

2. Shock: This jolts us out of dismissal and provides us with a harsh reality check, this can be that “oh shit!” moment.

3. Apology: This is when we are sorry on our body’s behalf, apologizing for having needs or taking up space.

4. Fault: We chase for a reason, search for a cure, “Why is this happening to me?” or “I need to find a fix!”

5. Fight: We are very aware of our body grief, and yet we’re determined to not let it get in the way of our life. This looks like overworking, dissociating, numbing.

6. Hopelessness/Hope: Hopelessness cannot exist without hope. Hopelessness is driven by despair, a normal part of this process. Hope is that last bit of light you see when you are in the pits.

7. Body Trust: Acknowledgement that you and your body are on the same team. This is what helps us move through each phase.

Why is it important to break the stigmas and normalize body grief?

This is something that we have ALL experienced, but haven’t had the language or tools to cope with this process until now! As you will see in the book, storytelling is what brings body grief to life, and connects our souls to each other's grief. The more we keep sharing our stories, the more we will build community, and community will forever be the antidote to body grief.

Connect with Jayne: Order the book // Website // Substack // Instagram

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My new book Fired Up: How to Turn Your Spark Into a Flame and Come Alive at Any Age, is available for preorder! Out in June 2025, Fired Up will give you the formula for finding your unique spark and show you how to use it to start fires in your life. By preordering, you can enroll for FREE in Firestarter University, a year-long online program that includes live monthly workshops, workbooks and resources, accountability check-ins, and a community to help you succeed.