If you’ve never had a migraine before, it’s hard to imagine how it’s different to a bad headache. It aches in your head, right? That’s a headache then, right? Well, no. After I was diagnosed with chronic migraine in 2017, my neurologist told me that migraines have more in common with epileptic seizures than they do with headaches. I remember sitting in his office, head pounding, stomach churning, skin tingling, feet and fingers freezing, and my body in a heightened state of hypersensitivity, much as it had been for weeks by this point.
“Having a migraine is a bit like having a seizure in slow motion,” he told me as I squinted against the blinding light coming through his office window. “Your brain is in the midst of a prolonged electrical storm, so it’s sending danger signals all over your body and your body is responding appropriately to that. The problem is, we have no idea why the storm is happening. All your tests have come back clear, and modern science knows very little about the causes of migraine so…” He shrugged. “Let’s talk about medication.”
This post is about the biopsychosocial medical model and how it relates to the treatment of chronic pain. As an anthropologist, I’m particularly interested in the social part of that model – what societal factors contribute to the causes of chronic pain? What societal and contextual factors could be used to help individuals recover from their conditions, and help society recover from the current chronic pain epidemic? To get to that though, I’m going to need to talk about the biological and psychological aspects too, because the three are inextricably connected, despite Descartes assertions about the distinction between the mind and the body. To illustrate this, I’m going to share with you my own experiences. They’re highly subjective of course, and my journey will not be identical to anyone else’s – what has worked for me may not work for you, and I’m certainly no medical professional. But I gift my experiences to you here for you to evaluate for yourself.
So, back to the story. I’d been having migraines periodically for a few years by the time I first met with a neurologist, but they’d been increasing in frequency and duration. Even so, going from a migraine every few weeks to 25+ migraine days a month – entering the World of Chronic, as one writer has described it – was a total upheaval. It was an upheaval that was only slightly improved by the 5 medications and various herbal supplements I began taking daily, the botox I had injected all over my head and neck every 3 months, the manual manipulation done by my physiotherapist and osteopath. From these interventions, the migraines decreased in intensity and the likelihood of being able to head them off with an abortive medication increased. But their frequency barely diminished, sometimes coming several times a day. I won’t go into it further, but reading this post by “Recovering Migraineur” Rochelle Hartman had me nodding furiously in agreement.
A few years earlier, I’d also been diagnosed with unexplained trigeminal neuralgia, a form of nerve pain that attacks your face when the nerves misfire. Many years before that, I’d been diagnosed with IBS, chronic fatigue syndrome and fibromyalgia – three more of the mysterious illnesses that “modern science knows very little about”. I had always suspected that they were all connected, somehow, but was assured by the various specialists I saw that I was just unlucky.
A societal burden
I give you this melancholy list of medical maladies only to say that I’m pretty familiar with the sight of doctors shaking their heads and sighing that they just don’t know what else to do with me. And it’s concerning that the medical community is so baffled by chronic pain conditions, because the statistics around chronic pain are frightening. In countries such as Australia, Japan and the US, up to one in five people, adolescents and children included, lives with chronic pain – that’s 20% of the population! According to a recent Pain Australia report, one in five GP consultations in Australia involves a patient with chronic pain and almost 5% report severe, disabling chronic pain. The incidence may be lower in some developing countries, or it may just be that citizens of those countries are less likely to report their pain to a physician – we just don’t know for sure, as there hasn’t been enough research.
What we do know is that chronic pain does not only affect individuals and their families. The economic burden of chronic pain on society is staggering, costing countries billions of dollars each year in health care expenses, not to mention due to the lost productivity of workers. Yet when a patient steps into a doctor’s surgery, the societal aspects of chronic pain become invisible. As medical sociologist Deborah Lupton writes in Medicine as Culture: “western medicine attempts to narrow the cause of ill-health to a single, physical factor, upon which treatment is then focused. Medical care thus tends to be oriented towards the treatment of acute symptoms using drugs and medical technology…” (p. 6). What I’ve learned on my own journey, however, is that this narrow focus simply does not reflect the science around pain and chronic pain.
Finding myself curable
In September 2018, about a year after my chronic migraine diagnosis was confirmed, I was lying in bed recovering from a migraine (just for something different), Googling, as I often did, for new treatments, new research, new ANYTHING to do with migraine that might give me some hope. I was surprised when an article caught my eye from digital magazine TechCrunch, of all things. It was titled “Curing the Incurable”, and it began by saying:
Very rarely, an app comes along that changes your life. I want to tell you about such an app, and how it changed mine. I had nothing to do with its making; I have never installed or opened it on my phone; and yet, I expect that this will be the most personal of the almost 400 pieces I have written for TechCrunch over the years.
As the article progressed, TechCrunch columnist Jon Evans detailed his wife’s seemingly miraculous recovery from a chronic migraine condition that sounded very similar to my own, after using a mobile phone app called Curable1. The premise of the app is that pain – all pain, not just chronic pain, and not just unexplained pain – is created by the brain. It explains, for example, that the idea of pain receptors in the skin is something of a myth. They’re not so much pain receptors as danger receptors (called nociceptors), which notice when the body comes in contact with temperature, noxious chemicals or pressure, then relay the levels of risk to the brain. The brain in turn assesses all the risk messages it receives, then if it deems it necessary, sends pain signals to the relevant location to get us to change our behaviours.
In essence: your hand brushes close to the stove > the nociceptors send a risk message > the brain assesses all the data it has available, including what it can absorb through all your senses plus what it remembers about getting too close to the stove in the past > the brain calculates the current risk > if it decides that your hand is too close to the stove, it will send pain to that area to get you to move your hand away. It’s actually an elegant, efficient system designed to keep you safe.
The science of chronic pain
As the TechCrunch article informed me (then later the Curable app itself, and then a whole lot of medical journal articles that I voraciously consumed to really nail this stuff down in my own mind), unexplained chronic pain occurs as a default system. First, the brain (everyone’s brain, all the time) uses shortcuts to determine how to respond to things as quickly as it can. Once it has given you a pain response to something a few times, a neural pathway forms. The next time that “trigger” occurs, the brain automatically responds the way it has in the past – by creating pain. It doesn’t even bother doing the calculation step anymore.
Simplistically, this is how acute injuries can become chronic, especially if the nervous system is also overly-sensitised. When there is structural damage, the brain gets used to sending pain to that location, so that even after the damage has healed, it keeps using that neural pathway shortcut as a “just in case” kind of thing. When your brain is scared for your safety, it doesn’t want to risk a misdiagnosis, so it figures it’s better to err on the safe side and send you pain so that you keep yourself cosily wrapped up in cotton wool2.
But sometimes there just isn’t any structural damage to begin with. If the nervous system becomes overly sensitive due to, say, stress or trauma, then the brain becomes paranoid about danger. It gets really crap at assessing the risk signals it’s being sent from the nociceptors, replying with pain signals where previously it wouldn’t have deemed them necessary. Because it’s terrified for you – it’s trying to protect you from EVERYTHING, including things you might actually want to do, like working or travelling or exercising.
It’s the ultimate helicopter parent, preventing you from having any fun because it’s really, really worried about your safety. Therefore, for many people, the key to curing chronic pain lies in desensitising their central nervous system, and that’s what the Curable app aims to help people do.
But all of this stuff only relates to one out of three critical aspects of the science of chronic pain – the biological aspect. What seems to be absolutely critical in healing from chronic pain is to acknowledge the other two, equally important aspects – the psychological and the social. Together, these three elements make up what’s called the biopsychosocial model of medicine, and, as it turns out, it’s actually a highly accepted medical model around the world.
Finding success with the biopsychosocial model
I learned a LOT about the biopsychosocial model from the Curable App, not only because I’m a nerd but because understanding the science behind chronic pain is an essential element in beating it. Before I knew that the brain can cause pain even when there’s nothing structurally wrong with a person, I was constantly worrying about my health. What if a tiny tumour was causing the migraines, too small to show up on the scans yet? Or, some other horrible disease that hasn’t yet been discovered? That fear was contributing to my nervous system getting stuck in a state of constant hyperactivity. My first step in recovering was thus to acknowledge that, while my pain was very real, and often very severe, it was not caused by a structural issue. It was caused by my thoroughly freaked-out brain and nervous system.
Regarding the psychological aspect of the model, I was fascinated to learn that chronic pain disproportionately affects perfectionists and people-pleasers, or what are sometimes called “goodists” for their chronic tendency to put others’ needs before their own. Those who endure Adverse Childhood Experiences (ACEs) such as poverty, abuse, neglect, or having parents who struggle with mental health or substance abuse issues are also at higher risk of chronic pain than the rest of the population (as they are too many other chronic illnesses, as pediatrician Nadine Burke Harris describes in this fascinating Ted Talk). So, too, are adults who have experienced trauma. That’s not to say that everyone who has chronic pain is a perfectionist-people-pleaser who has experienced trauma, or that every perfectionist-people-pleaser or trauma sufferer will experience chronic pain. But there’s ample evidence to show that the chances increase (see here, here and here for some interesting studies). From a psychological perspective, one could say that when we cannot, or choose not, to acknowledge emotional disturbance consciously, our body may do it for us.
With the assistance of the app, its related Facebook support group, and the additional guidance of a pain psychologist, (now that I know that that’s a thing), I’ve been journaling, meditating, and undertaking brain retraining exercises in a bid to desensitise my hyperactive nervous system. And it’s working.
As of time of writing, I haven’t had a migraine in 3 months, have had no trigeminal neuralgia flare ups, and feel calmer and more grounded than I have in years. Just a reminder – that’s compared to having 25-28 migraine days per month at the beginning, and later, about 15 per month that actually broke through my wall of botox and other medications. Now, when I do feel an attack starting, I have a swathe of techniques to use to stop it in its tracks, none of which involve medications. With the permission of my neurologist, I’ve gone from downing 5 different hard-core medications a day, to a half-dose of only one of those, and I’m nearly weaned off that one too. I’m slowly tapering off the botox, and the ketogenic diet I’ve been on3. I rarely take pain killers anymore. It’s a whole new world.
That’s not to say it’s been easy. It’s taken a vast amount of emotional work, a willingness to be brutally honest with myself, and a commitment to significantly changing my lifestyle and my way of thinking about my body and everything else. Has it been worth it? Absolutely. And I’ve felt guided and supported at every step by an app of all things! I know I sound like an evangelist (sorry!), but I can’t even describe the way my life has changed.
What’s all that got to do with anthropology, though?
I don’t know if you’ve noticed, but we haven’t really talked explicitly about the social aspect of the biopsychosocial model yet. Interestingly, we’re not alone in not talking about it. After I first started having serious success with Curable a few weeks into using it (but before I started reading medical journals), I very tentatively began approaching the various medical specialists I’d been seeing about my pain, to talk about my growing scientific understanding. I was so nervous talking about it, thinking that they were going to think I was kooky, or had been duped by some kind of cult.
As Deborah Lupton points out in Medicine as Culture, it’s critical that the relationship between doctor and patient is based on a shared understanding about health. All too often, patients bring ideas about health and medicine to their doctor that the doctor believes to be incongruent with medical science, and this lack of shared understanding can lead to distrust on both sides. I didn’t want to be that patient. I needed these people on my side. But my migraines were improving, and I really wanted their endorsement of my decision to pursue this mode of healing.
I started by telling my neurologist. To my immense relief, he was hugely supportive. “Oh, that app sounds very interesting, I’ll have to recommend it to my daughter!” he said. “Oh, does your daughter have chronic migraine, too?” I asked. “No, she has chronic anxiety,” he replied. “It’s all the same thing, though.”
My GP responded, “well of course, the biopsychosocial model is the primary model of health in Australia. We’ve been using that on you all along, we just don’t tell patients what it’s called.”
My physiotherapist said, “yes, I’ve heard of that app actually, it’s great, they draw on Lorimer Moseley’s work – here, I have copies of his book Explain Pain here, if you want to read a bit more.”
And so it went on, as I made my way through my various specialists. I’d been seeing these medical professionals for more than a year. They are all great at their jobs, and genuinely seemed to care about me and wanted me to get well. Yet not one of them – not ONE! – explained anything to me about the science behind my condition, even though they all acknowledged, when I asked them, that understanding the science is critical to healing.
Why didn’t any of these medical professionals talk to me about what was happening with my body? Why was it easier for my neurologist to shrug and say “we don’t know what causes chronic migraine” – the standard line peddled in the media, by the way – if he also knew that chronic migraine and chronic anxiety are “all the same thing”?
As an anthropologist, I find these questions absolutely fascinating. What do they tell us about the relationships between medical professionals and patients? Between medical professionals and patients’ bodies? Between chronic pain sufferers and the media? And, if I was able to successfully heal myself predominantly by using a mobile phone app and a Facebook support group, what does that tell us about our changing relationships with technology? How will these kinds of interventions change our relationships with medical providers? Could a shift in attitudes towards these interventions help people living with chronic conditions, a situation that can lead to extreme levels of helplessness and isolation, claw back some of their agency?
Given that anthropologists don’t naturally buy into the Cartesian dualism of mind versus body, but more often view the body as – to quote the influential 1987 paper by Nancy Scheper-Hughes and Margaret Lock – “simultaneously a physical and symbolic artifact, as both naturally and culturally produced, and as securely anchored in a particular historical moment”, who better than an anthropologist to tackle questions like these?
So, now that I’ve submitted my PhD, that’s what I’m going to do. I’m putting together a project to explore the social elements related to chronic pain – both antecedents and consequences (though anthropologists concur that everything is usually both and that the world is messy and contingent). With so many countries in a state of panic over the opioid epidemic, and with 20% of people in Australia – my home country – affected by chronic pain, I believe this is an urgent issue that needs our attention. And if medical professionals don’t feel empowered, for whatever reason, to help their patients understand the science behind what’s happening to them, I really want to understand why.
If you know of anyone I should talk to about this project, anything I should read, anything I should consider that I haven’t mentioned here, or anyone who might like to fund a project like this (!) I’d love to hear about it. Feel free to let me know either in the comments below, in our Facebook Group The Familiar Strange Chats, on Twitter @TFStweets, or email me (jodie.trembath at anu.edu.au). Let’s keep the conversation going!
[Image by Jodie-Lee Trembath]
- I should point out that I have no stake in Curable whatsoever. After doing the free trial for a week, I paid for a year long subscription, and have recently paid to upgrade that to a lifetime subscription. They don’t know me personally, I don’t know them, and they don’t know that I’m writing this piece [↩]
- Our submissions editor, Simon, made the point when reading this that I often talk about my brain as if it is separate from ME, and that this surely emphasises the Cartesian dualism I purport to be fighting against. He’s got a point and I’m not sure yet how to reconcile this. On the one hand, I genuinely believe that the brain is part of the body, and that I am my body. But as a thinking tool, I definitely do talk as if I am separate from my brain and body, and that the three of us are now working together (yay us, go team!). Any thoughts on this from readers would be gratefully welcomed! [↩]
- Though the keto diet HAS been great for a whole range of other health benefits, and I suspect helped me in calming my nervous system – think of all the sugar highs and lows I didn’t have to have! Plus, much easier to meditate when you’re not either jittery or falling asleep… [↩]
20 thoughts on “How I kicked chronic migraine (And what that has to do with anthropology)”
Great post! Thanks for sharing. And what a super post-doc project. Good luck!
Thanks for reading Pam 🙂
Hi Jode, interesting post, glad the app is helping although I am not sure how much is the app and how much is your dedication to defining and solving the problem. Ian
I definitely think it’s a mixed bag, which is exactly why it’s so important to incorporate the psycho and the social, not just the biological stuff into the model! I would say that if I hadn’t been at my wits end already, I may not have been so motivated to do the hard work that Curable requires, but if I hadn’t had the app I really wouldn’t have known what work to do, so – a little from column a, a little from column b I guess :). Thanks for reading!
My sociologist colleague Emma Whelan has written about the documentation and categorization of chronic pain. See https://blessonv.academia.edu/EmmaWhelan
That is super helpful, thank you so much!!
A friend sent this post to me as I am currently struggling along with chronic migraine, doing all the things and taking all the things! Funnily enough I’ve read about chronic pain before and found it fascinating (and am training to be in allied health myself!) but never related it to my own situation. Absolutely feel there’s a psychological aspect to my own situation though as the increase in frequency began after a series of stressful events. Thanks for these recommendations and a different slant on this crazy problem. Going to get that app 😉
You’re so welcome Emily, I really hope it works for you – to be honest, I think being on board with there being a psychological aspect to your pain is half the battle won – then the other half is working out what to do about that, which is where Curable was so helpful for me. Good luck, and thanks for reading!
Hi, I’m an admin for the Facebook group Exploring Pain: Research and Meaning. It’s got a lot of different types there: researchers, clinicians, professors, people with lived experience, etc. Among them are some pretty great minds – Bronnie Lennox Thompson and Lars Avemarie come to mind, but there are many more. You might also visit the Pain Masterminds Network and Pain Science Social Hour (a local group with some more general postings).
Meanwhile, I’m taking a Therapeutic Pain Specialist course through Evidence in Motion/ISPI, another good group of researchers and educators whose goal is to help clinicians teach people about pain, and give them support and understanding along the way.
At any rate, I’m going to post this on the Exploring Pain group to see if anyone there can be of help to you.
Amazing article, by the way! I’m always relieved when I see “nociceptor” and not “pain nerve.” I’m excited about what you discover as an anthropologist!
This is incredibly helpful Rachel, thanks so much! Is that Evidence in Motion you mentioned the one in Kentucky? How do you find the course? Seems like a really useful undertaking (both on your part and theirs!). Thanks so much for reading and reaching out 🙂
As a fellow Curable user, nerd, Australian & former chronic migraineur – I’m so excited to read this Jodie! You raise some great questions – that really need to be explored. I’m excited that you are keen to push further into this field – there is nothing quite like personal experience to help light a fire in one’s belly! Who better to lift its profile and awareness?
On a personal note – your experience with Keto: I’m not sure if you are advocating it or suggesting it is to be avoided? Coincidentally I have recently tried it (for reasons aside from pain management) – but I’m curious?
Hi Katherine – that’s so lovely of you, and I saw your comment when Curable published the article on their page – thank you so much <3. Also, how good is it to be able to use the term "former chronic migraineur"? Still gives me a thrill. As for keto - I'm not sure I would ever advocate a diet change to someone else as I don't know anything about it, but I've loved being on keto for myself. It was recommended to me by my nutritionist for the migraines, and I can't honestly say what difference it has made there, because I started Curable not long after and had such immediate and obviously connected results from that. But I do think that not having the sugar highs and lows helped me moderate my moods a lot, losing weight (a happy byproduct!) has meant that I've had more energy which has been very motivating to keep focused on my Curable work, and I really like the food, which makes it pretty easy once you get the hang of it. But again, that's just my experience. I joined Keto For Beginners Australia on Facebook, which is honestly a bit of a dumpster fire of people yelling at each other, but if you can just absorb the often excellent advice and ignore the trolling and flame wars (!) then it is really useful for navigating the complex aspects of the diet. Good luck, and thanks again for your enthusiasm, it means the world :)
As an anthropologist and former medical research laboratory manager who suffers chronic pain – thanks for a fantastic post. i will definitely look into that app. I have been heading down the path of recognising whats going on in the body including my brain, and making my ‘self’ (i dont define the locus other than saying its corporeal) step in to re-direct what i see as internal mutable pathways. im not sure it matters how you do it – thru an app, diet, meditation, exercise, reading science – i think they are all about finding what helps you to use your agency internally to produce better outcomes for yourself…i will still try the app though 🙂
I love the idea of ‘internal mutable pathways’!
Good article & excellent way to articulate. Keep it up.
Oh thanks Michael 🙂
Hi Jodie- lee. This is fascinating and encouraging. I started using curable couple days ago before I read this, to try and improve chronic tension headaches. Was there any one thing you found helped the most and did you see quick improvement? Feeling impatient and just want things to improve!
Hi Nikki – sorry I missed this earlier! It’s been a few weeks since you commented so I really hope you’ve been seeing some success since then. I think the thing that helped for me was being willing to stop and meditate whenever I felt the first signs of a migraine coming on – no matter what I was doing, I would excuse myself, head to the bathrooms, and do 2-3 minutes of square breathing (simple explainer here if you’re not familiar – https://www.youtube.com/watch?v=YFdZXwE6fRE). At first that was happening at least once an hour or so, and it was so tempting to take my abortive medication (and sometimes I did that as well at first, no shame in that) but over time, it happened less and less. The last few months I’ve been under quite a lot of pressure at work, and noticed that my body was sending me migraine signals a lot more often than usual, so I started doing that again, and haven’t had a single migraine – SUCH an incredible feeling, believing that I’m in control without medication. I’m off all my drugs now too, so that’s cool.
The other thing that I think helps a lot is being willing to do the writing exercises regularly. This is the part most people try to leave out, and it’s definitely both the hardest and most emotionally taxing. But it’s also the thing that seems to get the best results, in my opinion (and the opinion of medical specialists also!).
Hope that helps! Be patient with yourself if you can, but try not to judge yourself when you’re not. Recovery is not a straight line 🙂
Hello Jodie-Lee, your article just got me through a very big bump in my road to recovery. When I read your article, I had been using the Curable apt for three months and was starting to doubt it could be any help for me. Although I had been using the app at least three times a week, including doing the dreaded writing exercises, I felt more and more confused. The best image to describe how I was feeling is a drawing of a person with hundreds of speech bubbles above its head with words of all the things uncovered, but with no links between them. Your article allowed me to see the big picture if you like, the scientific connections between all these speech bubbles. It also put actual words on what I had been saying to incredulous medical professional for ten years: “I know the problem is with my brain thinking everything is pain”.
As a former anthropologist myself, the way you covered the subject really resonated with my way of seeing and interpreting thinks. Wishing you the best of luck with your new research (which I would love to hear more about) as I start looking at all the interesting references you provided!!!
Thank you for writing this and sharing your story. I’ve recently begun to experience chronic migraines and this has given me some much welcome hope for the future.