A conversation about pain

X: So I heard you were off for a few days with another headache. What’s going on there?

Me: Yeah that’s right. I get a lot of headaches. Some of them last days. This was one of them.

X: Oh I see! Well, can’t you just take some paracetomol like the rest of us?

Me: Doesn’t touch the sides. Worth giving a bit of context. I’ve suffered chronic headaches for the past 20 years. I have mild pain most of the time (somewhere between Vermeer and Whistler below), moderate pain a lot of the time (Rembrandt to Durer), and severe pain from time-to-time (who doesn’t love a Dali!?). Sometimes I have no pain (picture me sitting in the Orangerie in Paris surrounded by Monet’s panoramic waterlilies).

Either way, I have different coping strategies for different pain levels. Paracetamol doesn’t touch the sides I’m afraid. I get my drugs direct from the GP. I try not to use them much. Like many people, I don’t want to rely on pills. I have lots of other “coping strategies”, as the medical world calls them. Also, there’s a nasty thing called Medication Overuse Headache, which is where taking painkillers too often for headaches actually gives you headaches. It’s a real kicker – like a bonus form of headache!

X: So what does the doctor say? What sort of headaches are you getting? And why?

Me: In terms of a name – most of the doctors and consultants can’t agree. I’ve been variously diagnosed with migraine, chronic tension headaches, cervicogenic headaches, occipital neuralgia… you name it. What I can tell you is how they feel: A dull band of pain across the head. Sometimes a sharp lancing sort of pain through the temple. Sometimes a throbbing pain the nape of the neck. All pretty unpleasant.

X: Sounds complicated. Maybe you need some tests.

Me: Well, put it this way, I’ve been through enough MRI scans to grow rather fond of the sound they make. Kind of like Jon Hopkins and Autechre making music whilst drunk. Yet every scan is routinely inconclusive. There’s no physical problem any machine can see.

X: So it’s all in your mind then.

Me: Aha! Well this is where it gets really interesting. All pain is, of course, in the mind. That is how we conceive and perceive it. When you stub your toe, it ‘sends a pain signal’ to the brain. You feel the pain in your foot, but the pain actually only exists in your mind. This can be hard to understand, but we know it’s true because a small portion of people can suffer injuries without feeling pain, due to anomalies in their brain, and many of those living with pain have used various mental techniques, such as meditation, to calm pain and reduce the consequent suffering. So yes – it is all in the mind, but not in the way we think.

X: Okay, so why is it that you have no injury but get pain, but the rest of us don’t?

Me: It’s still unclear, but the science is changing. The traditional assumption is that pain is secondary – a result of some primary injury – usually assumed to be physical. But the latest thinking challenges this orthodox, to suggest that pain can be primary – that you can have pain without any underlying cause. That pain can be the primary issue. I find most people are pretty unwilling to accept this, especially with headaches. People will associate a headache with a hangover, dhydration or stress. And they will seek out a pain killer (eg an anti-inflammatory), or go to a chiropractor or physio, or, in extreme cases, even a surgeon, for what is assumed to be a muscular skeletal primary cause. But for me and others like me, it’s been proved time and again that these things don’t work.

Worldwide, on average, only 4 hours of undergraduate medical education are dedicated to instruction on headache disorders. A large number of people with headache disorders are not diagnosed and treated: worldwide only 40% of those with migraine or TTH are professionally diagnosed, and only 10% of those with Medication Overuse Headache.

https://www.who.int/news-room/fact-sheets/detail/headache-disorders

Liisa Jutila, Vice President of Pain Alliance Europe, agreed and highlighted: “Chronic pain has for years been poorly understood and poorly treated. The WHO recognising chronic primary pain should reverse this trend and improve the lives of patients around the world.”

June 2019 https://www.sip-platform.eu/press-area/article/world-health-organisation-proposes-new-definition-of-chronic-pain-giving-hope-to-patients

X: So what does work?

Me: A few things help: massage, heat packs, meditation, rest, some stronger pain killers (at a cost). A long stint of therapy helped a great deal. Reading about pain, psychology and neurology has helped. But so far nothing has stopped the headaches. I’m not sure I will ever stop them.

I’m warming to the latest Bio-Psycho-Social theory of pain, which proposes that for some people, pain is a result of a complex interplay of biological, psychological and social factors. A few fundamentals seem to play a role in my pain – at 6 foot 4″, I’m taller than average. Also I have a pretty sedentary life (I spend a lot of my time sitting on trains, in meetings, at my desk and in front of the TV (television is much maligned but it can be a great sedative to pain). But plenty of other people share these conditions but don’t suffer from pain.

Instead I’m beginning to conclude that that certain psycho-social factors are what make me a chronic pain sufferer:

  • when work gets very busy and I can’t pace my energy, but instead overwork to a high quality standard, I get pain.
  • when I can’t make time to regularly restore my introverted energy, by getting away from all you lovely folks to recharge, I get pain.
  • when I don’t have adequate time for my healthier coping mechanisms, like exercise and meditation, I get pain.

So control is key here – control of one’s circumstances, lifestyle and working style. It’s an ongoing set of experiments to create balance within and between these factors. But, as I learnt from the reliably excellent Pain Concern Airing Pain podcast, my self-analysis is backed up by science. A recent Nordics study found that the biggest predictor of back pain is ‘lack of control in life’. Take that expensive ergonomic chair manufacturers!

As headache disorders are most troublesome in the productive years (late teens to 50s), estimates of their financial cost to society – principally from lost working hours and reduced productivity – are massive. In the United Kingdom, for example, some 25 million working- or school-days are lost every year because of migraine alone; this financial cost may be matched by Tension Type Headaches and Medication Overuse Headaches combined. Headache is high among causes of consulting medical practitioners: one-third of all neurological consultations were for headache, in one survey.

Yet, many of those troubled by headache do not receive effective care. For example, in the United States of America and the United Kingdom, only half of those identified with migraine had seen a doctor for headache-related reasons in the previous 12 months, and only two-thirds had been correctly diagnosed. Most were solely reliant on over-the-counter medications.

https://www.who.int/news-room/fact-sheets/detail/headache-disorders

X: It sounds pretty bleak 🙁

Me: It can be. Especially when a lot of evidence points to pain being cyclical and self-reinforcing. The body becomes hypersensitive to pain stimuli and continually over-reacts. It’s called central sensitization.

When central sensitization occurs, the nervous system goes through a process called wind-up and gets into a persistent state of high reactivity. This persistent state of reactivity lowers the threshold for what causes pain and subsequently comes to maintain pain even after the initial injury might have healed.

http://www.instituteforchronicpain.org/understanding-chronic-pain/what-is-chronic-pain/central-sensitization

Understanding this is simultaneously helpful and dispiriting. Having chronic pain suggests a failure of the nervous system to successfully interpret a stimulus and create an appropriate reaction. But another area of science is critical here – not blaming the operator for the system failure – also known as fundamental attribution error.

In social psychology, fundamental attribution error (FAE), also known as correspondence bias or attribution effect, is the tendency for people to under-emphasise situational explanations for an individual’s observed behavioir while over-emphasising dispositional and personality-based explanations for their behavior. This effect has been described as “the tendency to believe that what people do reflects who they are”

https://en.wikipedia.org/wiki/Fundamental_attribution_error

Just as in my work I choose not to attribute failures in services to the people running them, but instead focus my time on the design of that service system, so I choose not to blame myself for the fact that my nervous system has got a bit haywired. Just as humans in any system are fallible, so human health is fallible. We’re not in control of our bodies, and anyone who believe otherwise needs to think a bit harder.

We take [the body] to be self, to be “me” and “mine,” but in fact it’s not really so at all… Your body has followed its natural course from birth until now it’s old and sick and you can’t forbid it from doing that, that’s the way it is. Wanting it to be different would be as foolish as wanting a duck to be like a chicken. When you see that that’s impossible, that a duck has to be a duck, that a chicken has to be a chicken and that bodies have to get old and die, you will find strength and energy. However much you want the body to go on and last for a long time, it won’t do that.

Ajahn Chah https://www.accesstoinsight.org/lib/thai/chah/bl111.html

I’d clearly rather not have the pain, but I do. I’ve spent 20 years trying to fix the pain and a lot of that has had me in battle with myself. If we agree with the World Health Organisation’s 2019 decision, that what I actually have is a chronic disease, and if we look at the earlier evidence that my particular form of pain is very poorly diagnosed and treated, then I’m lead to one of my biggest learnings from all this is: that this is how I am and that that’s okay.

To think otherwise – to grow angry with my failure to optimise myself and resolve the problem – ends up being an argument with reality. It may frustrate the doctors and health practitioners, who are endlessly goal oriented, but this conclusion is enormously relieving for me and, I imagine, to other sufferers. I continue to hope for a reduction in my pain, but I no longer fight myself to achieve it. And, as the great philosopher Tom Waits once said, “if you exorcise your demons, your angels may leave too.” By all means work to improve yourself, but we don’t often get to pick and choose between who we are.

X: Sounds like you’ve thought a lot about this.

Me: When the healthcare service fails, you need to step in and work things out for yourself. I didn’t think I’d end up being a buddhist as a result, but pain can be a wonderful teacher.

I’ve learnt a few other things along the way too. For instance, recognition of all the people suffering out there, but still just getting on with life, often in fearful isolation. My pain condition may be pretty rare (1.7–4% of the world’s adult population have headaches over 15 days in every month), but pain itself is not rare. Globally, it’s estimated that about one in five, or about 1.5 billion people, suffer from chronic pain, which is defined as pain that lasts more than 12 weeks and may arise without any initial injury.

X: Gosh, I had no idea… So at least you have others to share with. That must help.

Me: Well, although lots of people suffer, most suffer in silence. People don’t talk about chronic pain in western culture. We have this “I’m fine”, stiff-upper-lip approach to glossing things over. We conditioned to not want to burden people with our reality, but also we’re understandably fearful of the response. At best, “headache disorders are not perceived by the public as serious since they are mostly episodic, do not cause death, and are not contagious.” At worst, in a world that has an increasing tendency to blame the individual for their own ills, having long-term headaches is often seen as a personal failing.

So people stay quiet. I’m able to write this because I’m privileged. I’m established in my career. I’m privately educated, white and middle class. It’s less risky for me to be honest about my condition. “The Chief Medical Officer states that 25% of chronic pain patients [in the UK] lose their jobs, this contributes to 42% in the lowest income households being more likely to report chronic pain, compared with 27% in the highest.” This is very sad, as I can attest that isolation is the very worst thing when you’re suffering. It compounds the pain. Sharing is good for us. I’ve never had a bad experience from sharing the story of my pain. People open up and you can sense their relief. People offer to help. Yet fear of judgement stops many from doing it. Writing this to communicate my story is partly about me helping myself, but also about me helping other break silence.

X: It sounds like the healthcare system has really failed you and everyone else.

Me: Actually I have deep sympathy and respect for those who have worked tirelessly in our healthcare service. Everyone I’ve encountered has had a deeply rooted sense of service to helping me. However, from direct experience, they’re often working in spite of a system that, although very good at handling acute conditions, is really not very good at handling chronic conditions. This should worry us all, as those chronic conditions are on the rise.

People do not die from it and there are no “back-pain survivors” to spearhead lapel-ribbon campaigns for change. Few national medical plans even mention back pain. Sufferers are often viewed as impostors, or told that it is all in their heads. Though other aspects of a patient’s life do impede recovery from back pain, many people cannot easily take control over the context of their life, still less the content of their heads. The lack of a lobby accounts in part for the absence of more impressive projects to move beyond medical devices and drugs.

The Economist 2020 https://www.economist.com/briefing/2020/01/18/back-pain-is-a-massive-problem-which-is-badly-treated

X: What about acupunture and stuff?

Me: I could have paid off my mortgage with what I’ve spent on alternative medicine, the bulk of which hasn’t worked in any sustained way. Acupuncturists, chiropractors, osteopaths, cranial osteopaths, alexander technique, personal trainers, expensive pillows, many supplements – the list goes on. I’m not saying they don’t work for others, only that they haven’t worked for me.

X: So do you just end up loaded no opiates like the folks in America?

Me: Oh man it’s horrible what’s been happening over there. Widespread and seemingly uncontrolled use of very strong opiates like Fentanyl and OxyContin, often being improperly prescribed for injuries and short-term pain conditions, have wreaked havoc across the US. This has not helped the chronic pain community who, like me, use lower dosage opiates, in a controlled manner, to manage our pain. Fortunately, the UK and much of Europe has escaped the scourge of this problem. I hope we will continue to have sensible prescription policies.

X: So what can I do to help?

Me: That’s very kind of you. Here’s what helps:

Understand that I am regularly in pain. A lot of the time you speak to me I will be in pain. It might only be moderate, but it’ll likely be there. I don’t need loads of sympathy, just understanding that it can get in the way and slow me down from time-to-time.

Help me manage it. Mostly that’s about pacing my energy, hour-to-hour and day-to-day. One of my triggers is overdoing it. I find my work intellectually very stimulating, but the consequence of that is that it can be physically over-stimulating. So if I have to disappear from time-to-time, it’s because of the pain. I’m either trying to avoid a flare up (a period of intense pain which is more severe than the day-to-day chronic pain), recovering from one, or just recharging from an extended period of moderate pain, which – I assure you – really saps one’s energy over time.

Robert Greenleaf, Servant Leadership

Respect that it’s not my fault. By all means suggest things that worked for your Uncle Dave, but don’t be offended if I tell you it hasn’t worked for me. My situation and needs are a bit more complex. The World Health Organisation has only recently classified chronic pain as a disease. Even I find that an odd statement. It’ll be a while before all of us embrace this new logic. A while before we see lots of people running marathons in support of chronic pain charities. This is going to be a gradual process of cultural acceptance. One day we’ll look back with greater sympathy and understanding. For now though, this bit of writing is my contribution to that cultural change. To help understanding.

Help me with the shame. I come from a strong line of workers, where work ethic is central. My education had a fair amount of ‘stiff upper lip’ in it. I worry that people think getting headaches is insignificant. That self-care is a sign of weakness. That having chronic pain is a barrier to being an effective, productive employee. I know this isn’t true – I have a long history of delivering value whilst suffering from this pain condition. However, I’m still prone to feeling like an outsider, and as a result find it hard to sometimes go against the flow and properly look after myself. Yet, as a human, and in particular as a human man, I know I’m not alone in this; that pain, chronic or otherwise, is all around us. And that, in fact, it’s the shame that kills people.

Join me in applying the learnings. People will tell you that I live by the motto: you can’t design services for complex, messy humans without admitting that you are one yourself. “Customers” are as fallible, emotionally complex, unpredictable and vulnerable as you are. Because customers are humans too (shock). And customers want services that help them progress in life, through all this complexity. So I encourage the teams I work with to tap into their own messy narrative. Not only do they design with more empathy as a result, to create services that really connect with other humans, but they also collaborate with greater heart. It surprises everyone that sharing their vulnerability actually increases trust, when they have been led to expect the opposite.

Laugh with me. Most people who know me and read this will perhaps be surprised. I’m usually upbeat and energetic. I get stuff done with a smile. I’m not lying or trying to cover up for things in an unhealthy way. On the contrary, laughter and happiness is such a great medicine for chronic conditions. Once one accepts one’s condition as part of the human condition, kindness, gratitude, compassion and generosity are all that really matter. Realising this has been one of the greatest lessons pain has taught me.

X: Okay. Well, a man walks into a bar… ouch!

Me: …except headache jokes

One may long, as I do, for a gentler flame, a respite, a pause for musing. But perhaps there is no other peace for the artist than what he finds in the heat of combat. ‘Every wall is a door,’ Emerson correctly said. Let us not look for the door, and the way out, anywhere but in the wall against which we are living. Instead, let us seek the respite where it is—in the very thick of battle. For in my opinion…it IS there… As a result, there shines forth fleetingly the ever threatened truth that each and every man, on the foundation of his own sufferings and joys, builds for all.

Albert Camus, Create Dangerously

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