Rethinking Persistent Pain: What People Told Us Helps Most

If you’ve ever felt confused, dismissed, or overwhelmed while trying to understand your pain, you’re far from alone. Some recent research done by Flippin Pain Community Pain Champion, Julia Gover, explored what messages help people make sense of their pain, what gets in the way, and how education can genuinely empower patients.

We listened to over a hundred people living with ongoing pain who attended a Flippin’ Pain event. Here’s what they told us.

1. “Understanding how pain works changed everything.”

By far, the key message that people found most valuable was:

👉 Understanding your pain can be key.

Learning that pain isn’t always a sign of damage, and that the brain and nervous system can become overprotective, helped many make sense of the confusing ups and downs of chronic pain.

People said metaphors and stories really helped this “click” for them:

• The “overactive car alarm” analogy
• The “pain dial” that gets turned up by stress, worry, or past experiences
• Real-life examples where pain didn’t match injury – or where injury didn’t cause much pain at all
  

For some, this was the first explanation that actually fit their lived experience. When we asked people further questions about why this was important, they said two things:

Firstly, the idea that hurt does not always mean harm helped people let go of fear and begin to approach activity differently. Once they learned that nervous systems can become extra sensitive over time, many said they felt less frightened of movement and more able to experiment, pace themselves, and re-engage with life.

Secondly, people appreciated learning that pain isn’t just influenced by the body, but also by stress, sleep, past experiences, emotions, environment, meaning or context. Not because pain is “in your head”, but because the brain’s number one job is protection – and it uses all available information to do that. For many, this helped reduce guilt or confusion about why pain can flare for “no obvious reason.” It also helped them understand that the things contributing to their pain were likely to be individual and unique to them.

2. “It helped to know I’m not alone.”

Another message that people valued was simple but powerful:

👉 Persistent pain is common and can affect anyone.

Most people didn’t know just how many others were going through something similar. Hearing stories from real people and seeing the bigger picture helped them feel understood – and importantly, believed.

For many, this was the first time they’d ever felt their experience was validated rather than minimised.

3. “Recovery looks different for everyone – but it is possible.”

This message had a big impact, but only for those who reported feeling better since the event:

Recovery doesn’t always mean zero pain – it can mean getting back to what matters.

Hearing from people who had reclaimed parts of their lives gave attendees hope and a sense of possibility. Even those who didn’t feel physically improved said this helped shift their mindset in a positive direction.

But people also told us about the challenges…

It wasn’t all smooth sailing. Three key barriers came up:

1. “My pain is real – please don’t dismiss it.”

Some people worried that brain-based explanations meant their pain was being minimised. This highlights how important tone and clarity are when talking about pain science.

2. “I wanted more practical ‘what do I do next?’ guidance.”

People valued understanding pain – but many wanted clearer next steps, local support, or more personalised suggestions.

3. “So you’re telling me I can just think my way out of pain?”

Many attendees felt they were being told that their pain was because they were “thinking wrong”. Whilst a good understanding of pain is a foundational step to recovery, there is a journey to embark on when it comes to re-training the nervous system, with many changes to physical activity, sleep, stress-management and diet being very important. But this will look very different for everyone.

What this means going forward

Pain education really can help – not by telling people to “think differently,” but by helping them understand what’s going on in their bodies in a way that feels empowering rather than dismissive.

From our findings, the messages that matter most are:

• You’re not alone

• Your pain is real

• Your nervous system is trying to protect you

• Understanding pain can give you back a sense of control

• Recovery is possible but looks different for everyone

And importantly, people want this delivered with compassion, clarity, and connection.

Living with persistent pain can be challenging. What our research shows is that the right information, delivered in the right way, can help a lot. It can help people feel less afraid, more informed, and a little more hopeful about the road ahead.

And everyone deserves that.

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