Lisa Briggs, Lung Cancer Patient Research Advocate, Deputy Chair at ALK Positive Australia Inc. shared a post on LinkedIn:
“There’s a space in cancer that we don’t talk about enough and this article written by a psychologist living with advanced lung cancer summarizes it perfectly!
It’s NOT the:
- Beginning – focused on action and urgency.
- End – where everything is framed by loss.
BUT the space in between – ‘The Long Middle’.
The place where
- Treatment continues.
- The future is uncertain but not immediate.
- Life doesn’t neatly fit into the stories people understand.
From the outside, it can look like stability.
From the inside, it’s anything but…
It’s more like constant recalibration of energy, priorities, and what matters most.
It’s learning to live with limits that aren’t always visible, while still being expected to show up in a world that keeps moving on like nothing has changed.
And while medical progress has given us more time, it means more people are living in this space for longer…with no guide on how to survive each day while carrying the weight of our life on our shoulders.
‘Progress in treatments have inadvertently birthed a new demographic: The Chronically Terminal’.
‘When you are cured, the world cheers; when you are dying, it mourns. But when you are simply maintaining, the world is at a loss’
People don’t know what to say or do when you are living with a terminal diagnosis.
As the article reflects, there is no clear script for this space termed the ‘Long Middle’ and it has real consequences:
- Support quickly drops away and.
- Systems are not designed for you.
Maintaining a life in the ‘long middle’ is not passive.
- It is active.
- It is complex.
And it deserves to be seen.
Yet, the systems around us are still figuring it out. Healthcare, workplaces, even social supports haven’t quite caught up.
This is the space where I live each day. It’s where life persists, where courage is quiet, and where our presence is proof that life refuses to be invisible.”
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