What chronic illness taught me about grief, recovery and rebuilding a life

Collage by Jess Goyder, using an original image by Tiago Ventura

This talk was a turning point for me. In 2018, before grief became my formal work, I spoke publicly about the hidden grief of chronic illness - the loss of health, identity, independence, everyday functioning, and perhaps most painfully, the life I had imagined.

Looking back, I can see that much of what I now share with clients was already here. Not only the reality that grief reaches far beyond bereavement, but the understanding that it’s also only through grieving that we’re able to rebuild.

In this talk, I wanted to share what life with a supposedly ‘incurable’ chronic illness had taught me that might be useful to anyone. I pulled out five principles that helped me most – and I can see how much they apply to someone who is grieving too:

1. Give your body what it needs

Grief isn’t only emotional, it’s physical – and exhausting. Whether the loss is illness, burnout, bereavement, or some other life change, the body holds it all. When we’re grieving we need deep rest and nourishment. We need to keep moving to keep the huge waves of emotional energy moving through us, and we need to pace ourselves just as any athlete might. We need that more honest relationship with our own limits too.

2. Let go of striving

It was only through letting go of the striving that had driven me so hard for most of my life that I was able to even begin to recover. I was forced to turn my sense of determination inside out, in completely the opposite direction – from doing to being. Eventually I found a new appreciation for the everyday, the mundane. The simplest things – like being able to take a few steps beyond my front door – that I hope I’ll never take for granted ever again.

3. Let yourself feel what you really feel

This is still central to everything I believe about grief. We can’t move through what we won’t allow ourselves to feel. Sadness, rage, fear, relief, confusion, numbness - if you’re feeling it, belongs here. So often it’s only through allowing grief to move that something else can begin.

4. Connect

Loss can be so deeply isolating. We were never meant to face grief alone. Connection in this case might mean finding the people you can be your most honest self with – and knowing that not everyone will be able to give you what you need, however painful that may be. It might mean saying yes to help or even asking for it.

5. Choose your response

We very rarely choose the losses that shape our lives. But grief forces us to accept what is within our control and what isn’t. We do have a say in how we respond to grief. And I say this without remotely suggesting we deny the pain we’re experiencing - quite the opposite - or seek out the lessons too quickly. But it does mean that, over time, we do have some say in how we respond. It’s only through being honest with ourselves – and our grief – that we’re able to see what kind of life is still possible from here.

I still had a very long way to go when I gave this talk. In many ways, I still do. But I will always look back knowing that during the very worst period of my life so far - and there was plenty I didn’t touch on in the talk - I was also able to turn it into one of the most fulfilling and joyous experiences too. No one can ever take that confidence away.

At times I felt ashamed of my grief, probably in very much the same way so many of us are conditioned to feel ashamed of our more challenging emotions and grief itself. I’d tell myself ‘nobody died’. But part of me very much did die – and there was so much to be recreated. The last decade has made me who I am. And it was only through allowing myself to grieve that I was able to even begin building the best life I could from what I really had.

I still had a very long way to go when I gave this talk. In many ways, I still do. But I will always look back knowing that in what remains the very worst period of my life so far (there’s plenty I didn’t touch on in my talk) that I was also able to trun it into one of the most fulfilling and joyous experiences too. At times I felt slightly ashamed of my grief. I’d say ‘nobody died’. But part of me very much did die – and there was so much to be recreated. The last decade has made me who I am. And it was only through allowing myself to grieve that I was able to begin building the best life I could from what I really had.

All of this shapes my work today.