Looking for Help With Chronic Pain? Get the Right Advice First.

1 in 5 people are affected by chronic pain yet millions of dollars goes to pain research every year. Why are so many people still suffering?

Jan 24 · 8 min read
The right advice is your BEST pain medicine

TL/DR: We’re launching a brand-new website for people with persisting pain that helps them to find accurate, helpful and hopeful advice about what pain is, why it persists and how to move towards recovery. You could just go and look at PainChats or you could read the backstory (it’s good!)

It really bothers me that people aren’t getting better when they have pain because what researchers have learnt in the lab in the last 20 years tells us much about what pain is, why it persists, and how people can and do recover from it.

I’m a physiotherapist and I work with people in pain every day. I’m usually the last person people see — after they’ve been to the doctor, the surgeon, the acupuncturist, the massage therapist, and so on. There are no magic cures in my office, but there is science, listening and the willingness to care.

I like being the person that helps people do things that they didn’t think they’d be able to do. Like walk to the shops, ride a bike, play with their kids, go to parties wearing high heels, enjoy sex, cook dinner — and still be able to get out of bed the next day. Together, we work to make lives whole again.

When I tell people “yes, you can”, it’s not false hope. I can do that because I have an understanding of what pain is, why it persists and how people recover from it. I’m fortunate that I have been curious about understanding pain, and learnt about it (far in excess of what I was taught at PT school).

Knowing how to explain pain and using it to dispense a good dose of hope helps me sit with people on their worst days of pain.

Most people in pain don’t get that support. They get advice and information from doctors, friends and family that makes them more scared and worried, and less confident of their ability to get out of pain. They search online and it gets worse. I’ve seen that downward spiral of pain many times.

How can I be so confident to treat pain differently?

Thankfully, there’s a lot of research on pain and the clinical application of pain science to help people get back to living well. The path of new research out of the lab to the clinic via standard academic routes is slow. Sometimes new science doesn’t mix well with established clinical practices, so it doesn’t get adopted. The problem of pain is so large that different pathways from the lab to consumers have to be found.

I am massively proud of being part of the team that runs Pain Revolution in Australia. Pain Revolution is building capacity for best-practice pain treatment in rural and regional areas through upskilling health professionals as Local Pain Educators. These pain educators are the backbone of the program that will enable all Australians to have access to the knowledge, skills and local support to prevent and overcome persistent pain.

Even though we do incredible work with Pain Revolution, we still weren’t reaching the vast majority of people that look for pain advice online. Pain Revolution is a “side project” for me, and now my side project needed a side project! We needed to create an online source of the good information that our Local Pain Educators and other specialists were using in the clinic, in a way that would allow all people to find it online.

I thought I was too busy to start another “project”?

Through Pain Revolution, I have learnt about the power of communities. Communities lift up individuals to do far more than they can do alone. Good things need co-creation, and different opinions and creative leanings make projects come alive.

I couldn’t do everything myself and I’m not the only person who “knows stuff”. Instead of being a superhero, we’ve assembled an incredible team of pain specialist writers from all over the world who have contributed their clinical wisdom and experience to the website.

This website wouldn’t exist without the tireless help of my brilliant co-founder Edward Grigoryan. Ed has both wide and deep knowledge over many different domain areas (like medical anthropology, addiction neuroscience and computer science) plus the invaluable perspective of someone who has lived with pain (and recovered), and helped others treat their pain too.

The PainChats secret sauce

Our writers are rockstars (and we’re always looking for people keen to contribute) but it takes a different set of skills to rank high in Google, and reach people that are searching for answers to the problem of pain.

  • You have to understand what people are searching for online.
  • You have to do some tech magic on your website so that Google likes you.
  • You have to structure your content in ways that helps your information reach people in pain when they search for help.

Rather than launch an app or a “product”, we’ve chosen to focus on getting our posts on the first page of online search. Search optimisation is the least sexy, but the highest return, “digital health” strategy around. No sensors, no AI, no monitoring — just basic advice. 80% of consumers look for health advice online, and a lot of what they find about persisting pain makes them more worried. We’re focussing our efforts on making high quality, actionable and patient-centred information that’s easy to find online.

We are aware that the epidemic of chronic pain is complex, with many contributing causes, but we believe that one of the most significant problems in this domain is the lack of reliable and trustworthy patient-facing information. Our analysis of search engine traffic shows us that millions of users are turning to Google to answer their questions and find information about pain.

Pain information can help or harm

Most importantly, there is a tremendous gap between the evidence-based knowledge that savvy clinicians are aware of and apply to successfully treat patients in their practice, and the outdated, nocebic, and largely unactionable information that constitutes the majority of the information online.

Not only is most of this information not helpful in a meaningful way to people in pain, but it likely reinforces fear and worry that posture, alignment and “wear and tear” are the only reasons that people have pain. This information does little to empower the individual to take an active role in their own pain management and recovery.

Instead, a culture of powerlessness is unintentionally created; a passive patient passively relying on healthcare providers to “fix” the pathology underlying their pain with passive treatments. This information is a digital disease; there is an immense quantity of low quality, conflicting advice that is now reaching vast numbers of people.

We thus believe one of the best ways to have a positive impact on the epidemic of pain at a large scale is by filling this “quality information gap.” We endeavour to work towards an internet in which peoples’ queries about pain are met with helpful and hopeful evidence-based information that has been created with the needs of those struggling with pain in mind.

Walking a mile alongside people in pain

I read a lot of patient stories online and they horrify me. The stigma of having pain, the blame and shame people in pain experience, and the worry that pain rightly causes jumps out at me from the stories I read.

Some of our authors have a persisting pain story. Many of them don’t (me included). We cannot honestly say we “know” what that experience is like, and every pain experience is different.

You’ll see lots of images of shoes on our author’s pages. We’re ready and willing to “walk a mile” with people in pain, because that’s the only way that we can see where the science that we “know” lines up with people’s lived experience of pain (and recovery).

We can only be helpful to the extent that we are willing to listen to people in pain, and to the extent that people in pain are willing to be open to us — to share their experiences, their unmet needs, and their frustrations. We can only know if we’re truly making an impact if they allow us to walk alongside them and engage in a continuous dialogue. Thus, responding and adapting to feedback is one of the core values of PainChats.

We want to know what people in pain like about this site, what they don’t like, and what they would like to see more of, whether it’s something we already feature or something we missed altogether.

I am confident that we’ll get it wrong as much as we’ll get it right in the way we write and share stories. We’re guided by some of the trailblazers of pain science and explaining pain, and some of the brightest voices of advocacy for people in pain.

But they’re not the most important people in this story.

The most important people are those people in pain who are reading about pain science for the first time. People who have not heard that discs don’t slip (ever!), that people do recover from persisting pain, even after MANY years, and that there are reasons to have hope (without medications, injections and surgery), backed by extensive scientific research and countless success stories from clinicians who care enough to sincerely take the journey with people in pain.

Ready to read? PainChats is waiting

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Lissanthea Taylor

Written by

Writing about Pain, Illness Experience and Designing Better Health Care. Writes www.painchats.com

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