This is Part 2 of a series looking at 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.
Losing the Life in the Years
Persisting pain is not a disease that directly causes loss of life, but loss of quality of life was an almost universal part of the stories that we read in Pain Talks. Globally, persisting pain is the most burdensome, non-fatal disease accounting for loss of work hours and human potential.
Many of our authors talked about the challenge of defining “getting better”, and how to live a life that was meaningful, even with pain symptoms. Recovery involved clawing back quality of life in spite of pain, and finding meaning in the day to day again, even with symptoms. Critical to that feeling of quality of life was finding some control over the symptoms, and the impact of those symptoms on life events. Our authors wrote of the situation “calling upon us to become our own pill to ward off distress, sorrow and pain” — and learning how to manage the symptoms and the pain was a key marker point for recovery. It turned out for a number of our authors that regaining some parts of the life that mattered to them was also a fundamental part of improving their symptoms.
How Quality of Life declines with Pain
Pain caused by injury and emotional distress are universal human experiences (physical and emotional pain are processed the same in your brain). Pain is a protective signal from the brain that happens in response to signals from the body and the environment that you’re at risk of damage. Pain is not the only protective mechanism the brain has at it’s disposal — muscle spasm and swelling are two others that will also tell us to pay attention to our body and it’s surroundings. The point of pain, and the other protective mechanisms, is to change your behaviour, and protect your injured body.
This makes sense for injured tissues such as a sprained ankle or a lumbar spine disc injury. Both of those injuries heal and get better, and with gradual increase in activity and a supportive return to activity, they don’t affect quality of life in the longer term. What does affect the ability of someone to live a full life is the perception and belief that pain is telling them they’re being damaged further.
People who don’t get the right information and guidance to resume moving and doing meaningful activities slide down in to a spiral where their tolerance for activity becomes less and less. Normal activities become hard to do, sitting and standing and walking are gargantuan tasks. The brain becomes convinced that there are threats with every movement — and when things hurt, our instinct is to protect, to seek comfort, to seek safety. The problem is that a week in bed, although it feels like a good idea, sets your recovery back a long way.
I’m not unpredictable, but my pain is…
Common in the stories we studied was how chronic pain impairs people’s ability to plan and keep commitments. Most importantly, we came to hear that people with pain wanted us to know that it was the pain, rather than them as people, that was unpredictable. Pain didn’t change their personality, but they had to accommodate a range of challenging symptoms that fundamentally affected how they could interact with the world.
People wrote about feeling unreliable and letting people down, and missing out on life experiences because of the disease they were working so valiantly to manage. The feeling that “those who are chronically ill are bound to unpredictability” shows us an insight in to the daily battles people in pain fight against their desire to maintain a normal life rhythm and routine. Rather than being able to plan ahead, “my existence was being rocked almost constantly between hope and its opposite”, and rather than being able to make long range plans they “usually make plans on a daily basis instead”
Goal Setting and Life Planning
Chronic pain is hard work. From the stories that we collected and analysed, we understood how life with pain requires a lot of planning and organisation. Not only do symptoms of pain get in the way of normal life activities and obligations such as family needs, going to work, and recreational activities, but the time needed to treat the pain significantly affects people’s day. The “work of illness” can add hours every day to already precariously balanced life obligations.
Doctors and other health professionals may not realise the expectations they’re making of people, and can result in judgement or shaming of people that couldn’t fulfil the plans for whatever reasons. That person gets labelled “non compliant” or just not interested in getting better. Adding that work of illness in to the tetris puzzle of planning and organization around symptoms of pain, fatigue and brain fog creates a further decrease in life quality. Life shrinks to a cycle of exercises, appointments and obligations, and this can be overwhelming.
People need to know they’re making progress and making order from the chaos that chronic illness puts on their life. When presented with the work of managing pain, and determining what is effective, people need to be able to measure their own meaningful outcomes. Without the ability to see that taking action is worth the time and effort, it can feel that “present action is too insignificant to even cause a dent in the colossal problem before me”. Feeling overwhelmed and under supported was an all too frequently heard story from our authors.
Communicating Problems and Symptoms
A challenge our authors brought up was the difficulty they had in making sense of the symptoms and patterns of pain— and giving the pain a name. We know that pain that changes the brain and the nervous system is not the same as pain of an acute injury. We still don’t have a good name for this pain — and “chronic” doesn’t explain anything more than the time course of the symptoms. Anything longer than six weeks is “chronic” but that doesn’t help you or others make sense of it, does it?
Being able to explain to others what your pain is, and why it is persisting, is the basis for non-judgement and shame-free conversations grounded in empathy and understanding. We also uncovered the frequent experience of shame and blame in the stories of health care for pain. Explaining how your pain works, why it is the way that it is, and that you’re doing a great job retraining it is critical for people with pain. Taking responsibility is the same as regaining control. It might feel like the pain is something that happens to you — but the more we examine pain, the more we realise that our thoughts, beliefs and actions about the symptoms shape our experience.
Getting better from chronic pain is more like treating a phobia than treating an injury. We currently don’t have good ways to walk people through this process — even in multidisciplinary pain management centres. We have lots of information, science and stories, and we’re working to put them together in to things that people can use effectively to change their symptoms in their own life. To that end, people with a snake phobia rarely come to love snakes, but they can learn to function very well in an environment where snakes could be present. The same goes for pain. Knowing how you’re going to make changes — gradual exposure to challenging activities, managing thoughts and fears — is the path back to quality of life.