“Perceived Body Betrayal”

The Grief of Living with Chronic Illness and Pain with Jayne Mattingly

Living with a chronic illness means constantly navigating a complicated relationship with my body. It’s a balancing act—learning to trust it while also acknowledging its limitations. Pregnancy and now postpartum have added another layer to that, bringing mixed emotions: gratitude, grief, and more. Watching my body change in ways I couldn’t fully control and feeling the physical toll of these changes has made my friend Jayne Mattingly and her messages resonate with me even more.

I’m excited to share this guest blog from her, and support the launch of her new book, Body Grief.

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The Grief of Living with Chronic Illness and Pain with Jayne Mattingly

When I talk about Body Grief, I’m talking about that deep, aching loss that comes with realizing your body no longer—or maybe never did—function the way you need it to. But there’s another layer to this experience, one that I’ve come to call Perceived Body Betrayal.

This is the feeling that your own body has turned against you. That it’s fighting you rather than fighting for you. That the very vessel carrying you through life is the reason for your pain, your limitations, and your losses.

For those of us living with chronic illnesses like Ehlers-Danlos Syndrome (EDS), this betrayal is constant. EDS is a genetic connective tissue disorder that affects collagen—the glue that holds our bodies together. But what happens when the glue doesn’t hold? When joints dislocate from the smallest movements? When pain becomes a permanent resident in your bones, muscles, and nerves? When your body doesn’t feel like a home, but a trap?

The Pain of an Unpredictable Body

One of the most heartbreaking aspects of living with EDS and other chronic conditions is the unpredictability. One day, you might be able to walk without assistance; the next, your joints slip out of place, and you’re back in bed, immobilized. The world expects consistency, but our bodies refuse to comply. This instability fosters a deep mistrust—a fractured relationship between us and our physical forms.

How do you trust a body that doesn’t hold up its end of the bargain? How do you reconcile loving yourself when your own skin, joints, and nerves feel like they’re working against you?

The Layers of Grief

https://www.penguinrandomhouse.com/books/740125/this-is-body-grief-by-jayne-mattingly/

Grieving an unreliable body is different from grieving something external. There’s no separation—you carry the loss with you every second of every day. And the grief isn’t linear. It loops and spirals, triggered by every new dislocation, every doctor’s dismissal, every reminder of the things you used to do without thinking.

The world tells us to push through. To "mind over matter" our way through the pain. But what happens when the matter is your body? When the betrayal isn’t imagined but real?

Reframing the Betrayal

The truth is, our bodies aren’t actually betraying us. They’re just operating under different rules than the world expects. The betrayal isn’t in our cells or connective tissue—it’s in a society that wasn’t built with us in mind. A society that frames disability as failure rather than a natural variation of human existence.

This doesn’t erase the grief. It doesn’t make the pain less real. But it does shift the blame away from ourselves. Our bodies are trying—even if they’re failing in ways we can’t control.

The Barriers to Healing

But healing Body Grief isn’t just about mindset—it’s about access. It’s about acknowledging the very real, systemic barriers that prevent many disabled and chronically ill people from receiving care, support, and validation.

Medical gaslighting is a widespread issue. Many of us—especially women, people of color, trans and nonbinary folks, and those with rare or poorly understood conditions—are dismissed by doctors, misdiagnosed, or outright denied care. We are told our pain isn’t real, that we’re exaggerating, that we just need to lose weight, think positive, or try yoga. This systemic neglect deepens our Body Grief, making us question our own reality and delaying the care we desperately need.

Beyond the medical system, financial and logistical barriers make healing even more difficult. Insurance (when we have it) often refuses to cover necessary treatments. Mobility aids, physical therapy, and medications can be prohibitively expensive. Disability benefits are notoriously hard to access, forcing many into financial precarity. And in a world that prioritizes productivity over rest, many of us are left struggling to survive in systems that were never designed for disabled bodies.

Healing Body Grief isn’t just about personal resilience—it’s about recognizing these oppressive systems and demanding better. It’s about naming the injustices that exacerbate our pain and grief, because we cannot heal what we are forced to deny.

This Is Body Grief: A Framework for Healing

I wrote This Is Body Grief because I know firsthand how painful and isolating this experience can be. Body Grief isn’t something we "fix" or "get over"—it’s something we learn to live with, to navigate, to soften. In the book, I introduce the seven phases of Body Grief:

• Dismissal: The stage where our pain is ignored—by doctors, by loved ones, even by ourselves.

• Apology: The instinct to say "I’m sorry" for needing help, for being "too much," for existing in a disabled body.

• Shock: The moment of realization that things may never be the same, that the body we thought we had is gone.

• Fault: The urge to blame ourselves, to wonder what we did wrong to deserve this.

• Fight: The push to "overcome" our disabilities, even when pushing through can do more harm than good.

• Hope/Hopelessness: The swinging between believing in a better future and fearing that nothing will change.

• Trust: The phase that is with us all along—learning to trust ourselves and our bodies again, even with their limitations. When in the end all 7 phases are non linear and multi cyclical.

Through stories—both my own and others’—This Is Body Grief explores these phases, offering not a cure, but a pathway forward. A way to meet our grief with compassion. A way to practice harm reduction in our healing, rather than forcing ourselves into toxic positivity or relentless self-blame.

https://www.penguinrandomhouse.com/books/740125/this-is-body-grief-by-jayne-mattingly/

Ehlers-Danlos Syndrome is just one example of Body Grief. But the feelings that come with it—loss, anger, exhaustion, resilience—are universal to so many disabled and chronically ill people. This Is Body Grief is for anyone who has ever felt betrayed by their own body. For anyone who has ever wondered if healing is possible when the pain never fully goes away.

Because healing doesn’t mean erasing the grief—it means learning how to carry it. And sometimes, it means fighting for a world where fewer of us have to carry it alone.

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I hope this resonates with many of you - to hear more from Jayne, you can follow her on Instagram or check out her website.