Living with Chronic Pain: A Journey Beyond the Diagnosis

Day on fire

Chronic pain is a complex, deeply misunderstood condition that impacts not only individuals, but also their families, workplaces, and society at large. For many, the journey begins with a confusing, often distressing cascade of appointments: multiple specialists, diagnostic tests, surgeries, injections, and experimental treatments. Despite relentless effort, patients are frequently met with the disheartening message: “There’s nothing wrong with you.”

For those who are fortunate, this marks a turning point where they are referred to a pain specialist, enrolled in a multidisciplinary pain program, or connected with a psychologist or physiotherapist trained in chronic pain management. For others, it may instead begin a cycle of medication trials, each with diminishing returns and increasing side effects.

One of the most transformative tools available is pain neuroscience education. This model shifts the paradigm by explaining that chronic pain is not simply a sign of tissue damage but a complex brain-generated protective response—often the result of a nervous system that has become sensitised. Through this lens, patients learn that pain is real, even in the absence of ongoing injury, and that it can persist due to the brain’s learned response—akin to a “broken alarm system.”

For many, this education offers validation for the first time. It reframes the narrative from disbelief and dismissal to understanding and empowerment. Patients begin to develop self-management strategies—graded exposure to movement, pacing, mindfulness, and cognitive tools—that offer a measure of control.

However, even with effective education, many patients find themselves in a difficult position once the structured support ends. The expectation is that with knowledge and techniques, they should now be able to manage independently. Yet chronic pain, particularly when driven or perpetuated by underlying factors such as inflammation or degenerative changes, doesn't always respond to education alone.

This is where the current model falls short. Unlike conditions such as substance use disorders, which have established, long-term community support structures like 12-step programs, those living with chronic pain often face silence after initial interventions. There is an unspoken pressure to “get better,” and a subtle judgment when improvement plateaus. But pain, like any chronic condition, is unpredictable—it can fluctuate, relapse, or evolve.

What’s missing is ongoing, accessible, judgment-free support. A space—not necessarily medicalised, but grounded in understanding—where people can return when needed. Whether daily, monthly, or once a year, individuals should have a place where they are believed, supported, and equipped, without the pressure to justify their pain or performance.

As a healthcare professional and someone living with chronic pain, I have seen both sides. I’ve experienced the power of pain education and the isolation that can follow when that support ends. Chronic pain needs to be treated as the long-term condition it is—with continued care, community, and compassion.

We would never tell someone with diabetes or addiction that their support has expired. Why do we accept this for chronic pain?

It’s time we stop measuring progress solely by the absence of pain, and instead by the presence of agency, connection, and dignity.