This is Part 1 of a series of about the lived experience of pain. The source stories came from the Pain Talks collection on Medium.com. The stories were collected from writings about pain that were searched on the site, and the writers were not given any stimulus for writing. We were interested to understand better what people living with pain wanted to share, and how we might use that to understand how we can improve pain care for all.
The first striking thing that came out of the stories in the collection was not only the invisible nature of the disease, but also how invisible the struggle of the experience of living with pain was for people. The challenge that people with pain have to validate their experience, and to receive empathic responses from people in their life circles was striking. Many of our stories spoke of people’s challenge to convey to the people in their lives that not only did they have pain, but they were trying very hard to manage it, and to get better. Many stories mentioned the comment “you don’t look sick” as something they commonly heard when explaining their disease to others. One story talked about the challenges of the “games my mind plays on me when I’m mocked for looking “fine’ on the outside”. “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”, except the pain is real. If you experience pain, and live your life relative to it, that pain is very “real”, yet it’s not seen.
Pain is Hard to Explain
Explaining persisting pain to people without that disease is very hard. The disconnect that happens between people is based on the lack of understanding that persisting pain is different to everyday “normal” pain. When you have pain for some time, and under the right conditions, your brain changes to become more sensitive to input from your environment and from within your body. Your brain is a constantly adapting and changing organ, which is always learning based on the environment and experiences it has.
With persisting pain, certain parts and pathways in the brain and the nervous system get turned up, and “happy places” are turned down — so that the information coming to the nervous system from the environment is no longer accurate. Things that shouldn’t hurt do. They hurt more, they hurt longer and they hurt in ways that people without that pain don’t understand. “No one can truly understand what it’s like to be twenty and feel like they have the body of a ninety year old” was mentioned by one writer. “I can no longer discuss specifics of my care with many people simply because it’s gone beyond the scope of their understanding” shows that feeling alone and isolated in this condition is something that affects the quality of people’s lives.
The Search for Empathy
People in pain want an empathetic response and understanding. Not fixing, not sympathy but simply the “wish for somebody, who looks at me and just says things are alright, take your time”. People with pain “are good at masking our symptoms because we don’t want to be buried in an onslaught of genuine but exhausting concern from the people around us”. They don’t want their disease to be a burden on you, or for you to feel that you need to help (in fact, they really don’t want people to make suggestions about medication, therapies and “have you tried heat packs”)
How Can we Change the Face of Pain Care?
The stories that we collected and examined from the Pain Talks collection made us think about the ways that pain care needs to change. This disease is not only about pain, it’s about suffering. We hope that we can use the data that these stories tell us to re-design the experience of people in pain as they recover from this illness
- What can we design and create that enables people with pain to better tell their story?
- How can we share the story of the experience of pain better with others?
- Can we prescribe pain stories to Doctors to help them better talk to people in pain?
- How can we re-design workflows so that stories can have a time and place in the clinic?
- Can we use technology to better extract the data in the stories and highlight the things that we can work on to change?
One of the challenges faced by people that have pain that persists is that even in the science world we don’t have a good name for it. This pain is caused by changes to the brain — plasticity we call it, however other than “chronic pain” no one has given it a name that makes sense. The International Association for the Study of Pain has recognised this and is working on finding a new name so we can understand this pain is different. When we have a name for disease that describes the changes to the brain and the nervous system with pain, we can help people to better make sense of how their nervous system changed, and how their experience unfolded. It’s the first step on the way back to living well.
Our stories in Pain Talks tell us of a lack of empathy and understanding for people in pain. As other stories we’ll share later tell, people feel unheard in the interactions they have with their doctors and health care practitioners — and both their pain and their mental health suffer as a result.
The practice of narrative medicine and the close reading of stories, related to health care or otherwise, has been shown to increased the ability for health care professionals to engage with the full stories of people’s lives and illnesses. Could be prescribe stories to Doctors to read, as a way of honing their skills in listening, and include this in medical education? Should we have mandatory patient involvement in medial conferences and professional development courses?
Listening takes time. Stories can eat in to the precious time for “doing” in the clinic. Here we face a paradox and a conflict in how we administer health care services. Patients want to be heard, and to tell their story, but in the 15 minutes (or less!) of primary care appointments, this means we miss the opportunity to do the work of medicine. Is it any wonder that people in pain are prescribed medication and sent on their way with fingers crossed by Doctors trying their best within a system that doesn’t work well for anyone?
Using various means of harnessing the power of technology can help with many facets of pain education, treatment and assessment. It’s a brave new world of possibility.
Helping pain means we work together to help people live well outside the clinic visit, and regain quality of life. For many people, that quality improves long before the pain changes. We must start with designing for stories to be heard and shared.