Where’s the Good Information about Pain?

Designing for Pain Part 3

This is part 3 of our series of posts about the lived experience of pain that came from the stories found here in the Pain Talks collection. Through these stories we’re crowdsourcing empathy for people living with pain, and using these stories as a basis for designing the future of pain care. We’re looking forward to seeing your comments below — did we understand, or did we miss something you need us to add? Let’s start a conversation.

For people with pain, finding accurate information about pain, and effective treatment, is as elusive as a cab on a rainy night in New York City. Pain, whether it is new pain, recurring old pain, or an increase in familiar pain, seems to only be explained in one way. The information and diagnoses people are given is about damage to their body; a herniated disc in their back, a tear to a ligament or weakness of various muscles. This sets the scene for confusion and fear that pain can never change. Not every injury or damage is painful, and pain can also continue long after the body has done it’s healing processes. Conflicting information adds to the confusion, fear and feeling alone in this experience that people told us about in Pain Talks.

Humans are hard-wired for stories, and we find a narrative to match our symptoms. It’s a human need to make sense of what we experience and to understand why we hurt. Pain’s bark is often worse than it’s bite — there can be a lot more hurt for the degree of damage to tissues. When we’re looking for information about persisting pain, surgery is often suggested as an inevitable outcome to fix pain. If we understand pain correctly, then we know that surgery can change your anatomy, but it doesn’t directly change the mechanisms that cause pain to last longer than an acute injury.

Pain usually comes with a side of fear and anxiety, because these are part of the protection mechanism of pain. People in pain find it hard to get accurate information that they can apply to their own experience and make changes that enable them to live a full and active life. Instead they commonly live with the “paralyzing fear of having to live like this for the rest of my life”.

What the Doctor Tells Us about Pain

Pain is one of the most frequent reasons for people with pain to visit their Doctor, ER or other health care professionals (HCP). People are seeking help because they need answers — they want someone more knowledgeable and expert to make sense of why they’re feeling pain. They need to know what the pain means, and if they should continue to be scared and afraid to move and live their lives. They need to know what they can to do to get better.

For people with pain “those aches and pains are as mysterious as ever to me, and I don’t know what to think”. Not knowing what to think, makes pain even scarier. People wonder if they’ll ever get better. One of our authors even said when they hear a Doctor say “lets talk about pain management”, such as learning techniques for pain self care, they “knew once I heard those three words the doctors had lost his or her interest in finding the root-cause” of their pain. Education-based pain treatment can never feel like we’re giving up on people, it needs to feel like people are being handed back control over their life and experience.

Some of our Pain Talks stories told both distressing and depressing stories of people’s experiences in the health care system. They talked about feeling dismissed, unheard and even scrutinised for asking for medication to help them to feel a little better. In writing these posts, we decided to leave out the “health care is horrible” story. We wanted to focus on the opportunities to do better, and help people with pain in more effective and comprehensive ways. There are so many aspects of the health care interaction that are system-level and institutionally driven, and another post bashing our front-line staff who are just trying to do their job, and trying to care, was something we didn’t want to do. If you’re keen to #unbreakhealthcare, start HERE and see how you can be involved in the healthcare of the future.

What Information do People in Pain Need?

People in pain are not getting the information they need to make sense of the symptoms and understand their experience. The information they need is more than just about the biological damage that happens to spines when we live our life, or even the biomechanical “tightness and weakness” models people are familiar with. Dr Google can tell us that information (with varying degrees of accuracy), and that is what Doctors and other HCP’s are good at examining and diagnosing.

The information that’s missing is about the science of pain, and pain as a disease of the nervous system. Some of the information people need is about the physical changes that happen in the nervous system to amplify the signals and cause more pain. Some of this is about the meaning, the context and the experience of having pain, and how we can alter this to affect our pain. A huge part of what is missing is how we can treat pain — and how people can self-treat pain in their own lives.

Pain is a unique disease in which our coping and thoughts about the symptoms affect the symptoms. They affect individuals differently — increasing or decreasing symptoms — and have different effects on the impact pain has on someone’s life.

This is part of why pain is so hard to treat, and we don’t yet have all the answers to be able to formulate a blanket fix for treating pain. Part of the reason that opiates can be effective is that they dull some of the pain that the brain creates, but they’re only a small part of the many factors that can help some one recover their life from pain. Opiates can be “the only thing that helps us lead a semi normal life, take just enough pain away so we can dress ourselves in the morning and get a shower after a long day” which can be a start to using other strategies for sustainable change.

Learning about Pain and Pain Science

Pain science research tells us that helping people to understand what happens to the brain and the nervous system when they have pain helps them to recover. Understanding the changes that happen to the anatomy of the nerves that increases the sensitivity in the nervous system is important to help people start moving again.

“No one knows how hard it is to comprehend that my own mind is causing the pain” was a comment that caught our attention, because it hints at a bigger challenge that people in pain face when the explaining pain model of education is used. Often, people with pain get the feeling that health care professionals are telling them that the pain is all in their head. “If you do not have a cast on your arm, or a bandage around your head, any pain that cannot be seen is all in your head” was a part of a story in Pain Talks. This experience of feeling invalidated, unheard and possibly crazy was a common part of many stories. The challenge with the “explain pain” information, is that it can sound like a scientific explanation for “the pain is all in your head”. This is a risk particularly if HCPs don’t have the necessary training to fully understand the science, or sufficient time and skill to help you make sense of the new information. People need to hear new information in different ways to make sense of the story, and to be act on it. If we get that right, then we enable people to fit the new information about their brain creating pain, and “turning up the volume” of pain, and realise they’re not crazy, even if the symptoms feel that way.

Information and Understanding are Critical to Recovering

Information is a critical part of being able to recover from pain. However a person with pain defines their recovery, as one of our authors stated that “it was the understanding that got me here, to this new, better place”. Recovery from pain doesn’t mean being painfree, but it means pulling back some control over symptoms, and a return to the activities that make life happy and meaningful.

Education is a standard part of health care. Increased understanding of the body and how to care for it is important for getting people engaged in their own care. Handouts, books and videos form an important part of making sense of a diagnosis. The challenge with pain is that we don’t currently teach people a lot about pain, because it’s not the diagnosis. We teach people about their disc injury or their tendonitis, but not the way that this “danger” changes their nervous system. We’re only telling half the story, and we know from the people that recover their lives from pain, that we need to help people find the right information for the other side of the equation. In pain, education is a huge part of therapy and recovery.

Good Information Resources about Pain Science

Start here on finding new information about Pain and Pain Science. This article also has some useful links too.

Design Considerations

From what we’ve learnt about the need for information that helps people to recover from pain, we pose the following three questions. We’d love to see your answers in the comments.

Are we learning from the right experts about Pain?

As we’re learning more and more about the lived experience of pain, it looks like there is a gap in knowledge. Health care professionals have a lot of important skills to assess, diagnose and triage serious injuries and illnesses. Their expertise has to fit in to discrete time slots, specific symptoms and stories of illness, and for people with pain, it doesn’t seem to give them what they need.

People that have lived with pain, and learnt to move forward and continue life have already gone through a lot of trial and error. They’ve usually made themselves a guinea pig for working out how to live with pain. How could we access the collective intelligence and understanding of people that also have pain? How do we crowdsource empathy, and make understanding a part of how we help people recover?

Can we all talk the same way about pain?

From what we have learnt from people with pain, they hear many different stories about what pain is from different health professionals.We should be “considering pain not as a marker of injury but as a human experience, it should not be an alternative or niche therapy, but the very thing that unites us.” If this is so critical, how do we reach both professionals and the wider population to talk about pain in a different way?

How do people best learn and use information about pain to get better?

Information can be presented in many different ways. We have various modes of showing information — written, verbal, visual for example. When we’re helping someone with a new idea, such as understanding pain, how can we help them to interact with the ideas, and make them real in their own lives? How do we design for both understanding and behaviour change in such a complex area as pain?

We’ve used these design principles to create PainChats, and we’re happy to share them with you too. If you’re also working on helping solve some of the challenges for people with pain, please contact Lissanthea via hello@painchats.com as we believe we’re all going to help pain better by working together. Here’s your invite to join us and get better pain information about recovery from low back pain.

Like what you read? Give Lissanthea Taylor a round of applause.

From a quick cheer to a standing ovation, clap to show how much you enjoyed this story.