The Grief of Chronic Illness: Learning to Make Room for What Is
On crip time, the fear of feeling too much, and how somatic practice taught me to sit with grief.
One of the themes that comes up again and again in my work with people living with chronic illness is grief.
Not only grief for the health we’ve lost, or the things we can no longer do, but grief for the life we thought we would be living. Grief for time spent waiting to feel better. Grief for the uncertainty of not knowing when—or whether—things will change.
I know this grief intimately.
There were years (actually decades), when my life revolved around my symptoms. I would lie in bed and wait for a moment when I might finally feel some relief. My world became smaller and smaller, organized around what my body would allow me to do.
I remember thinking, over and over, that this was such a waste of a life.
I wanted to be out in the world, making plans and pursuing the experiences that make up a life. Instead, I was waiting. And while I waited, time kept moving.
There is so much to grieve in an experience like this. Chronic illness can alter our relationship with time, with our bodies, and with the future we imagined for ourselves. Much of this grief is invisible to the people around us. And because there is often no clear ending, no single moment when we can say this is over, the grieving itself can feel endless.
Living in a different time
Disability scholars have used the term crip time to describe how disability can disrupt the timelines and rhythms that society treats as normal.
When you live with chronic illness, time can become something other than a straightforward progression from one thing to the next. You might spend days waiting for symptoms to ease, cancel plans at the last minute, or find that milestones other people seem to reach with ease are complicated by the unpredictability of your health.
You may be living in a different relationship with time altogether: one shaped by waiting, adapting, uncertainty, and the constant negotiation of what your body can manage.
There can be grief in this difference. There can also be loneliness in trying to explain an experience that other people may not understand.
And beneath the practical challenges, there is often something more intimate: the pain of living an experience you never wanted, and the difficulty of being with that pain.
The fear of feeling too much
For a long time, I was afraid to be with what I was feeling.
I was afraid that if I really let myself experience the grief, it would swallow me whole. That I would start crying and never stop. That if I allowed myself to acknowledge how much I was hurting, I would somehow be giving in to it.
I hear versions of this fear in my work, too. We can become frightened of the feelings already living inside us. We brace against them, try to think our way around them, or keep ourselves busy so we don't have to get too close.
And often, we develop stories about what it means to feel.
I'm feeling sorry for myself.
I should be handling this better.
If I let myself feel this, I'll never get out of it.
I'm giving up if I stop trying to be positive and push through this.
These stories can be painful in their own right. They can also distract us from the experience underneath them. Instead of feeling the grief, we find ourselves judging it, explaining it, defending ourselves against it, or worrying about what it says about us.
This doesn't mean those narratives are foolish or that we should simply make them disappear. They often develop for good reasons. They may be ways we've learned to protect ourselves from helplessness, shame, or the fear that our pain will be too much for anyone—including ourselves—to bear.
We may need to listen to these stories, understand them, and gradually make peace with them, too.
But we don't have to let them have the final word.
Sometimes, beneath all the thinking and judging, there is simply pain. There is sadness, anger, fear, longing, or exhaustion all of which are waiting to be met. There is the experience of being in a body and a life that feel incredibly difficult right now.
And part of healing may be learning how to be with that experience, rather than continually struggling against the fact that we're having it.
Learning to feel, a little at a time
Somatic work changed my relationship with my grief. It taught me that I didn't have to force myself to confront everything at once, and that being with an emotion didn't mean drowning in it.
Somatics employs the practice of titration.
In chemistry and medicine, titration involves making small, gradual adjustments. In somatic practice, titration means approaching an emotion or sensation a little at a time, in a way that respects our capacity to be with it.
Rather than plunging into the deepest part of our grief and hoping we can withstand it, we learn to approach it in small increments, just dipping our toe in. We might notice a tightness in the chest for a few moments, then look around the room and notice the light coming through the window. We might acknowledge the sadness in our throat, then bring our awareness to the support of the chair beneath us allowing ourselves to feel the relief of gravity holding us.
We move between touching the difficult experience and reconnecting with something that helps us feel supported in the present.
This isn't about avoiding the feeling. It's about developing a relationship with it that doesn't require us to abandon ourselves.
I sometimes think of this as microdosing grief: allowing ourselves to feel a little, then pausing; noticing what is here, then noticing what else is here. We don't have to open the floodgates. We can begin with a few seconds of contact, and discover what it's like to stay with ourselves through that moment.
We can also notice the stories that arise as we do this. Perhaps we feel guilty for being sad, or impatient with ourselves for not feeling better. We can acknowledge those responses with curiosity, too, without needing to argue with them or make them go away before we continue.
The invitation is not to feel everything. It is to become a little more able to feel what is here.
And sometimes, the most caring thing we can do is stop. If the feeling becomes overwhelming, we can open our eyes, look around, find the door or the window, feel our feet on the floor, or reach out to someone we trust. We don't need to push past our limits to prove that we're healing. This is how we begin to expand our capacity.
Letting grief have somewhere to go
When we spend a long time resisting an experience, some of our energy can become caught up in that resistance. We may brace against the sadness, hold our breath around the pain, or try to persuade ourselves that we shouldn't feel the way we do.
This is understandable. Sometimes resistance is what helps us get through the day. We don't always have the space or support to feel everything that is happening inside us.
But when there is enough room and support, gently turning toward what we feel can offer another possibility. Rather than adding a struggle with our grief to the grief itself, we can begin to meet it with a little more care.
This doesn't mean grief will disappear, or that feeling it will change the circumstances of our lives. It doesn't mean we can process our way out of chronic illness. Our bodies and our lives are more complex than that.
For me, though, learning to make room for grief has changed my relationship with it. Over the years, as I've practiced allowing my sorrows to be here without demanding that they leave, I've become less frightened of what I might feel. Grief still visits. But I no longer experience every encounter with it as something I must survive.
There is a difference between being in pain and being afraid that the pain will destroy us. Sometimes, slowly and with support, we can begin to discover that difference.
A gentle practice for when grief is here
If grief is present for you, you might experiment with offering it a little care.
First, take a moment to notice your surroundings. Let your eyes move around the room, let your gaze walk the walls, take in the shapes and colours. Feel the surface beneath you, or the support of the chair or bed. You don't need to turn inward if that doesn't feel right today, sometimes simply orienting can be profoundly supportive.
If it feels manageable, notice whether you can sense some trace of the grief in your body. Perhaps there is a heaviness in your chest, a lump in your throat, a hollow feeling in your belly, or a sense of pressure somewhere. You don't have to find the right place or name the feeling perfectly. You can simply be curious.
What is the sensation like? Does it have an edge, a shape, a temperature? Does it seem to take up a lot of space, or is it faint and distant?
Stay with it only for as long as feels okay. Then let your attention move toward something supportive. You might wrap yourself in a blanket, prop yourself up with pillows, hold a cushion against your chest, or notice the warmth of your hands.
Sometimes I imagine my grief as a small child who has come looking for comfort. Instead of telling it to go away, I wonder what it might be like to let it rest for a moment. To sit beside it. To let it cry into your shoulder, if that's what it needs. To ask, gently, What do you need right now?
You don't need to find an answer. You don't need to make the feeling better.
And you can stop at any point. If turning toward grief feels like too much, return to the room around you, connect with someone safe, or leave the practice for another time. There is no prize for going deeper than you can comfortably go.
The point isn't to make yourself feel more. It's to discover that you can meet what you feel with care. That's it, that's the practice.
Making room for the life you're living
There is a kind of courage in allowing ourselves to feel the pain of a life we didn't choose. Not because suffering is something we need to overcome or transform into a lesson, but because our experience deserves to be acknowledged -- by us.
We don't have to pretend we're okay. We don't have to turn every loss into an opportunity for growth. And we don't have to stop hoping for change.
We can grieve what has happened, feel the frustration of what remains uncertain, and still allow ourselves to be here, in this moment, with the life we are living now.
I keep returning to the idea that the thing we most fear feeling may also be a place where something important is waiting—not necessarily an answer, or a cure, but a deeper capacity to stay with ourselves through the difficult parts of being alive.
This is not something we have to do alone. A trusted person or somatic practitioner can help us approach difficult experiences at a pace that feels manageable, with support and room to pause. Sometimes another person's steady presence helps us feel less alone with what we're carrying.
If you're longing for support in exploring your relationship with your body and your experience, you're welcome to book a discovery call to explore working together one-to-one.
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