This is part 4 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.
“My pain matters because I’m a human” was a quote that summed up the experience of people with pain. Pain is a human experience, and a part of life. It is also a medical symptom, a signal of health status, and a reason that people seek help. Unless we talk about the whole person and the whole life, we’re missing the point of the exercise of health “care” as persisting pain involves far more than damage to a person’s body. The experience of pain affects how people interact with the world, and with the people around them. People in pain lose their identity, their social positions, and their sense of self. How can we design products and services that help people in pain on this human level?
Labelling and Blaming
“When the pain is there, the pain is all there is” wrote one of our authors. People in pain can often become all-consumed by this condition, and this attention to the pain is part of how the disease works. Your brain and nervous system changes with pain so pain takes up more of your thinking. The health care system also puts labels on people so they become a “chronic pain” patient. Chronic pain is hard to treat, and putting that label on a person identifies them as a difficult person with a difficult disease.
People with pain come to be identified as just their disease, not as a person. This is a common story in other areas of health care also, and people are referred to as “patient with ______” rather than “Mrs Smith”, or even “Jane”. Pain presents a greater challenge to understand as our diagnosis and definitions of what pain is are and how it affects a person’s life are frequently vague. “My body doesn’t like me” was one way that our writers conceptualised their feelings about the way pain affected them.
To make sense of their pain, people put their own labels on it, and create the stories that make sense. Often these stories add to the fear and anxiety that there is something that’s been missed, or that nothing can ever change. It’s hard to read, as a health care professional, that a person felt they were “nothing but a patient code number in a vast insurance network where nobody cared about fixing or treating me”. When we can’t give voice to the disease, but we label the person, we make getting well a lot harder for them.
Empathy for chronic pain is hard since having a hyper sensitive nervous system is not something many people can identify with. This is where metaphor becomes critical to foster shared understanding. If pain is like a fire alarm telling you about a “fire” in your body — an injury or an overused movement pattern — then most people can identify with this.
There’s good understanding, culturally, that your back can get painful, and you rest, stretch and look after it, then the “fire alarm” turns off. What is very hard to understand is a person who has a fire alarm system that goes off with no fire — it can go off because of lack of fire, or people running in the house or for seemingly no reason at all. A fire alarm like that that which wakes you in the night for no reason would be incredibly annoying and frustrating. You’d look for an expert to check the wiring and the cables, and to check the control system as something there must be wrong.
This understanding of the control system and the way it causes the pain experience is what we are only just starting to understand. It is critical for both the people with pain and the people around them, to understand. When we have a shared understanding and a name, not just a label, then when “every morning is a tough morning, there are no “no pain” days” is a person’s experience, we can better understand how that person is living.
People are labelled — not only as having “chronic pain” but as malingerers, addicts, and medication seekers who will not help themselves get better. Lack of understanding about the mechanisms of pain is a root cause of this. People in pain are treated as though they’re wilfully staying stuck, that “this disease ruins people’s lives and all the help we get is being told to wait”. The experience of illness is complex, and some people get some benefit from attention and control by being sick. These are a very small minority in any illness population, so why are people in pain so quickly judged? Imagine how it feels when “everyone has an opinion of my life but no one is living it for me”?
Losing Identity and Becoming a “Patient”
Chronic pain develops insidiously. It feels like something that doesn’t heal and needs more time and rest. It feels like there is something broken that needs to be fixed, so why would we move when we have pain? That doesn’t seem to make sense if we’re waiting for healing.
When we understand pain, we know that moving well and within your tolerance levels is critical. Chronic pain is defined based on the length of time that it is present. You have pain greater than 6 weeks, and all of a sudden you’re “chronic”? This label gives no meaning to the process or the mechanisms of this life experience.
Diagnosing pain and understanding the meaning of this was a struggle many of our authors faced. After a defined length of time, six weeks of pain, you’re simply “chronic”, and you’re in the basket of hard to treat patients. This word alone conjures up fear of a state that cannot change, and that people will never get better. People don’t always become pain-free, but they do reclaim their lives, and become well again.
Understanding the pain diagnosis, and what it means for life and living, has proven to be very challenging for our authors in Pain Talks. For many, the “paralyzing fear of having to live like this for the rest of my life” is not a fear that is easy changed and answered. Instead in it’s place sat stories of discrimination and disability, of guilt about being sick, and the feeling of laziness. For one author, “I miss my independence, my energy, my sense of small adventures”, another who “wonders if I’ll ever wake up feeling good again”. “Feeling lazy with a chronic illness is, sadly, a common occurrence” concluded another author, and this was shared throughout a number of the stories.
Pain and the effect on people’s life is profoundly challenging to people’s self image and concepts. Pain reduces life to struggling through activities of daily living. One author said, when talking about narcotic medication, that “it’s the only thing that helps us lead a semi normal life, takes just enough pain away so we can dress ourselves in the morning and get a shower after a long day”.
Learning to cope with a malfunctioning “fire alarm” system like we described previously changes from conscious living to survival. “I try like hell to keep myself healthy on the good days, but on the bad days, it’s hard enough to get out of bed and put on pants; f;%k the rest” were the words of another author. Retaining a full and active life, the ability to contribute to community and family, and to be a productive member of a workplace is complicated many times over with persisting pain. Having a seemingly unpredictable condition, with a mind of it’s own as to the severity of symptoms, removes the feeling of control and self determination over life. Pain makes people feel powerless to make the kinds of decisions they had previously, and life becomes survival through symptoms.
Grief, Acceptance and Loving What Is
When we read through stories of people that had reclaimed their life from pain, there were strong stories of grief, sadness and acceptance. For many authors, “accepting the imperfect, unexpected, unwanted shifts in your life as much as your planned and perfect ones” was a critical part of recovery. Getting to that point of acceptance was a variable process in the stories we read, and often involved working out the boundaries that pain had presented in people’s lives. Once people found the boundaries, they could begin to work with them, and challenge them to regain their sense of self. One author wrote of a humbleness required in that process, “I’ve let go of ego, because quite frankly, that pride will get you nowhere but more physical pain”. The needed to accept the boundaries that pain imposed, was key to finding a safe starting point to work on desensitising the nervous system and increasing tolerance to activity again. This was the crux of getting better.
Pain challenged people’s self concept and their life plans; it fundamentally altered how they lived their life and saw their future. The stories of the people that turned pain around to rebuild their lives had acceptance at the heart of their stories. Grief, sadness, loss and anger were points along the road downhill, and seemed to be a required passage. People wrote stories of needing to feel this loss before change could happen, and to reach a point where new concepts and strategies could be put in place to help with pain. The stories told us that people reached a bottom point of acceptance before getting better. How can we help people to get there in the best way to minimise suffering, and how can we shorten the downhill slide?
- How do we help people name their pain and be able to explain it to other in their life?
- How do we help people with expression and acceptance of pain in their lives?
- How do we change the way that health professionals talk about pain?
This is a recurring theme throughout these stories since the inability to explain pain, and why it affects people in the way that it does, is a huge block to empathy and understanding. The scientists and the academics haven’t answered that question — perhaps we need to design the answer, rather than wait for science to tell us what is correct. We need a solution that helps people, and makes sense to others. Only with understanding and empathy will we change the blame and shame around the disease of Pain. We need to give pain a name that can show people that it’s a disease of the nervous system, a hypersensitivity, not an unhealed injury or a psychological disturbance.
From the stories we heard, acceptance and understanding was a key turning point in recovery. Making sense of what happened to cause pain, and being able to express the loss and the sadness, as well as the physical symptoms of pain seems to be critical. Designing for creative expression, storytelling, shared narrative and support in people’s everyday lives and environments can go part of the way to recovering. Putting self expression and understanding in to a medical and health care framework would go a long way to fostering empathy and promoting recovery.
Once we’ve determined that pain is running your life, and that the medical side of diagnosing illness has been taken care of, we can ask different questions about people’s lives. One author put it very well, they said “Doctors should ask: when do you want to take back control of your life? When did you realize you were no longer in control of your day-to-day life?”. Changing the focus away from pain, and towards the things that bring quality of life seemed to be critical points in recovery. This requires a different thinking and service design than simply prescribing opiates and hoping the pain settles down enough to regain normal life.