Pain is like a memory, a path reinforced every time we walk down it. As such, it’s quite possible that writing this is an act of self-harm. It’s not just that it hurts to write, although it does; it’s that when I started thinking about this piece, reading around it, even jotting down notes, I felt the pain in my forearms flare up again, and for a month or two I considered calling it off. My physiotherapist would call that “avoidance”. I would call it “learning from experience”, given that it was writing that got me here in the first place.

It was late in the summer of 2020 when I started to develop an aching in my forearms: first the left, and a few days later, the right; a vague, untroubling pain, similar to the after-effects of a workout. I figured, like any reasonable person, that my arms were just tired. I had been typing late into the evenings finishing a book proposal, which, on top of everything else – household jobs, phone usage, the cliched pandemic sourdough baking habit – was taking its toll. (Honestly, have you ever considered just how much you use your hands?)

At that time self-employed and unable to take days off, I made my first mistake: I kept going. I downed ibuprofen and rested when I could. It was only as the pain worsened, spreading from the backs of my hands then into the epicondyles, the bony protuberances on either side of the elbows, that I started to worry. My GP, unfazed, diagnosed me with lateral epicondylitis, or “tennis elbow”, which made me laugh – I haven’t played tennis in years. When the pain spread to the inside of the joint, the diagnosis expanded to include its mirror image, “golfer’s’ elbow”. (Both are caused by tendon damage, but in the opposing muscle groups.) Again, I thought: ha.

He prescribed cortisone, steroid injections at the site of the pain. This, I would later learn, is considered an outmoded treatment, as likely to delay recovery as hasten it. Rather than fix the problem, the injections made my elbows swell up like marshmallows. The pain, meanwhile, only worsened.

By that Christmas, the pain had become constant and excruciating. From my elbows and hands, it radiated into my shoulder joint. My strength left me. Pretty soon I could barely open doors; changing gears hurt, so I stopped driving. One morning, when I tried to pour my three-year-old a glass of apple juice, I found I could no longer unscrew the lid.

Looking back, those early months are a blur. Unable to home in on a diagnosis, doctors ordered tests and scans – X-rays, MRIs, ultrasound, nerve conduction studies – but this being the NHS mid-pandemic, waiting lists were months long. I ended up going for one scan privately, and spent days watching YouTube videos on how to read MRIs until the official verdict arrived: there may have been a slight narrowing of the foramen in my spine (the bony arches on the side of each vertebra, through which nerves pass). Bone spurs, in other words. But the specialists couldn’t be sure, and when my NHS MRI finally arrived months later, it came up clear. No spurs, no narrowing. The mystery continued.

I don’t know which the professionals ran out of first: options, or interest. But eventually there were no more tests to be done. The best diagnosis any doctor could settle on was “some kind of repetitive strain injury”. (RSI, which experts now refer to as repetitive strain syndrome, is a group of tendon and muscle disorders associated with overworking. Tennis elbow is one. So, too, are carpal tunnel syndrome and cubital tunnel syndrome, both of which were suspected at various points.) A year into my pain, I was still searching for a cure, pursuing every treatment, supplement and crank self-help book I could. But I was wasting my time. By then, my pain had already become chronic.

* * *

To be human is to hurt. Almost all of us experience pain every day; most of the time, we are better off for it. Pain is a defence mechanism, one that helps us to avoid harm. Without it, our lives would be much shorter and considerably more gruesome.

Although pain is frustratingly subjective, it is, at least for the most part, relatively predictable. You spill a hot cup of tea, and the moment the liquid scalds your skin, damaged cells release chemicals that activate nociceptors – a body-wide network of pain detectors – in the surrounding tissue. Those nociceptors transmit a signal through the nervous system: an alert is fired to your spinal cord, triggering a reflex reaction (removing your hand from the hot object). At the same time, another signal passes to your brain so it can work out how bad the damage is, and therefore how much it needs to hurt to discourage you from doing it again. Pain researchers commonly compare that moment to a gate being opened: the worse the injury, the wider the opening. The problem arises when, in some cases, the gate stays open. The pain becomes chronic.

Chronic pain – any pain that persists for longer than three months – is a vast and growing public health problem. The numbers are unclear (unlike cancer, there is no national register). By some estimates, between a quarter and a third of the UK population live with ongoing pain; for those who are 75 or over, that figure rises to more than half. About 3 million people in the UK live with chronic “primary” pain – that which has no identifiable physical cause. For those with this condition, myself included, pain is no longer a symptom: it is the disease itself.

Despite its prevalence, we understand relatively little about what causes some pain to become chronic. Certain risk factors make one more susceptible: biological sex (women are more likely to report chronic pain), genetics, smoking, depression, poverty. But the exact chemical and neurological conditions that cause pain to linger are still the matter of intense study. What seems certain is that something causes the pain circuitry in the body to become oversensitised, inferring pain even if no damage has occurred. In some cases, even the lightest touch can trigger a pain response; for patients with this condition, allodynia, it can be agony just to get dressed.

In my case, one of the most confounding aspects of my new situation was how unpredictable and nonsensical my symptoms would appear. Pain flare‑ups would happen seemingly at random, and last days or weeks at a time. The pain would move around: one day it would be in my forearm, then my armpit, then the back of my hand, before settling in my ulnar nerve. I felt as if my bones were being haunted by an unseen foe.

Meanwhile, I was burning through my book advance by paying for physiotherapy, and buying a new posture-correct office setup. I started wearing a wrist brace, then an elbow brace; my cupboard filled with various physiotherapy tools. FlexBars, resistance bands, knobbly massage wands – from her curious glances, I think the delivery woman thought I was buying up a dungeon’s worth of sex toys. None of them worked.

I tried alternative therapies. I started an expensive CBD habit, adding to a growing cupboardful of supplements. And I read every book and paper I could find on RSI and chronic pain, hoping to find a cure. The list of potential suspects grew to include trigger points (knots in the myofascia, sheath-like material that surrounds muscles), poor diet, blocked chi and, according to one bestselling book, by the late Dr John Sarno, subconscious narcissistic rage. I consumed this material avidly, trying every treatment suggested. I have no doubt that many of those things work for other people. But not for me.

Then there was the medication. Having addiction in the family, I refused to even consider opioids, so was instead prescribed anti-inflammatories and put on to the NHS’s pathway of neurological pain drugs: amitriptyline, an antidepressant often also used to treat nerve pain; pregabalin; and later, gabapentin, an epilepsy medication that I later discovered is popular in British prisons because it can enhance the high from other substances. Getting prescribed the correct drugs was a painful process too. For example, amitriptyline did nothing for the stabbing that by then had settled in my inner elbow, but did make me so drowsy I would fall asleep during the day; when I asked to change medication, the GP practice explained that, because the effect of these drugs can be slow, I was expected to endure them for at least several weeks before being prescribed something new. (This strategy is unintentionally cruel and clinically misguided, given that studies show that the longer a person is in pain, the harder it is to get rid of.) I eventually persuaded the doctors to skip that step – crying down the phone will do that – but, even then, the stronger medication didn’t dull the pain, either.

It wasn’t just me, at least. I later discovered that, according to the latest research, gabapentin helps only around one in seven patients with neuropathic pain like mine (and even then does not eliminate the pain, merely reduces it). The other drugs aren’t much better. In fact, in May 2023, a comprehensive review by researchers at the University of Southampton found that there is little evidence that most of the antidepressant-class drugs used to treat chronic pain have any effect beyond that of a placebo. (They found one exception: duloxetine.) The lack of evidence for antidepressants, and the deadly epidemic of opioid addiction, are among the reasons that Nice recently amended its recommendations for chronic pain to focus on psychological treatments. Back then, however, I had no idea. All I knew was that, in my early 30s, I had suddenly become a person who owned a pillbox and a medication schedule; and, even after all that, I was still in pain.

Just over a year in, my doctors had apparently exhausted every diagnostic possibility. Short of sending a surgeon in to dig around in my nerve canals – risky if they’d even try – there was nothing they could do, and so I was referred to the specialist pain clinic at my local hospital. These clinics are staffed with nurses, physiotherapists and psychotherapists. At my first appointment, a nice, well-meaning doctor told me upfront: “We’re not here to provide a cure, but we are going to try to help you manage the pain as well as possible.” I was put on a new course of physiotherapy, and given a dedicated pain psychotherapist. I started a pain diary, tracking hurt the way we had tracked my wife’s pregnancies. Rather than feeling seen, I felt abandoned. The message seemed simple: if I wanted a cure, it was now up to me.

***

At some point in my pain journey – I forget where now – I was introduced to the distinction between “pain” and “suffering”. Pain is acute sensation, dictated by nociceptors and nerve pathways. Pain is verbs: stabbing, burning, aching. Suffering denotes everything else caused by that pain: avoidance, anxiety, loneliness, depression. If pain is what our nerves tell us, suffering is how our minds react.

When other people asked about my pain, I tended to respond in a typically British fashion. “It’s fine,” I’d say. Or: “You know, good days and bad days.” The truth is, I was suffering. I could barely work. Hobbies – piano, guitar, video games, baking – were all casualties. They were replaced with research: books, scientific papers, YouTube videos. Being a journalist who has long written about science for a living, I had endless questions about my condition but nobody whom I could easily address them to. In reality, my pathological search for a cure was only making me more and more desperate.

At home, I had to cut back on using my hands. That meant doing less housework; for a while I could barely do the dishes without a flare-up, which meant my wife, Hannah, taking on most of the jobs while heavily pregnant. Our relationship suffered. I, meanwhile, became insular, angry and increasingly depressed.

About six months after my pain started, Hannah gave birth to our youngest daughter, Edith. She was perfect: fiery-haired and beautiful. But, to my utter devastation, I found that I couldn’t hold her for longer than a few minutes without the pain in my arms becoming unbearable, and I had to put her down. The medication knocked me out, so I would sleep – dreamless, catatonic – through the nightly wake-ups, leaving Hannah exhausted. Whereas with my eldest I had been an intensely hands-on dad, this time I avoided the baby; I later realised that I was associating her with the pain. It hurt me to hold my baby. Looking back over everything that has happened, that is still the hardest to bear.

Other people were sympathetic – at least, at first. The thing about chronic pain is that it is invisible. For most people, pain is temporary, so after a while everyone forgets. “Oh, the arm thing? Is that still going on?” my colleagues would say, half-heartedly. Friends stopped checking in. The receptionist at the GP surgery started to seem irritated at the sound of my voice: “Is it about your hand again?” Others were well-meaning, if ill-judged. I remember clearly the time one doctor, after listening to me worry aloud about never being able to work again, suggested earnestly: “Well, is there a job you can do that doesn’t involve your hands?”

***

To be in chronic pain is to live in phases. The pain would ebb and rise like a tide, though what lunar influence lay behind it eluded me. I would have a good week followed by a bad month. Progress is never linear, the doctors would say. I worried endlessly that I would never work again, never again be able to pick up my kids. A year became two years. My symptoms changed – the locus of the pain slithering around my arm and up into my neck, like some kind of parasite – but my mood didn’t. I grew used to living in this new body, always hurting, always tired, always angry. The anger made me ashamed; the shame led me further into the spiral.

One of the strangest things I’ve learned about pain is how bound it is to attention. Soldiers in the heat of battle ignore fatal injuries; nurses distract babies before administering shots because scientists have proved it will hurt less. Distract the brain from pain with another sensation, and the original pain is reduced. Perversely, this is true even with chronic pain: one of the only times my arms wouldn’t hurt was when I had a headache.

And so, I started responding to some flare-ups by hurting myself. Not in a life-threatening way – I never drew blood – but enough to distract me from my everyday hurt with a newer, more visceral one. I’ll be clear: I was stupid. I was expressing the anger I felt at my body for betraying me; it was some way of controlling the uncontrollable. I didn’t tell anyone else what I was doing, and took care not to make it obvious – until one evening my wife noticed that I had large bruises covering my thighs. We argued. I told her I would stop. I didn’t.

The urge to hurt myself became darker. Ultimately the only way to not live with pain, I figured, was to not live at all. The idea was like an earworm. Once it caught on inside my head, I couldn’t seem to rid myself it. “What if?” quickly turned into “How?”. The only thing stopping me was the thought of leaving my girls fatherless. (In this, too, it turns out I am not alone: as many as half of all chronic pain patients may report suicidal thoughts. In the US, nearly one in 10 suicides is a chronic pain sufferer.)

One night that summer, in the midst of my darkest period, my wife and I argued for what felt like the millionth time. Overcome, I told her the truth about how I was feeling. I don’t recall exactly what I said, but I don’t think it was particularly eloquent. I can’t do it. I can’t hurt any more. It was then that she gave me an ultimatum: seek help, or I would lose them anyway. It was only then that I realised how much I needed help, and how the pain had poisoned my thinking. “Chronic pain isn’t just pain that doesn’t stop,” writes Julia Buckley in her memoir Heal Me, “it puts your entire body in a chrysalis and morphs you into a monster.”

I found a better therapist, privately. If I had waited for an NHS appointment, I might not be here now – and, well, a year or so later, here I am, writing this story.

***

The medical professionals who have most helped me through this journey have been the unexpected ones: the osteopath who took me and my curiosity seriously, even if the treatment did nothing; the pain nurse who helped me navigate medication withdrawal; the physiotherapist who, as I will describe, taught me more about the importance of getting some joy back into my life, and in so doing saved me more than any exercise.

At other times, the British healthcare system has caused me as much suffering as the pain itself. I have muddled through years of appointments and tests, dealt with physicians ranging from the uninterested to the incapable. Rarely have I felt like more than a list of symptoms, or a name to cross off a waiting list.

In August, I will have been hurting for three years. For most of that time, I have held on to hope: the hope that I was just the right scan, the right referral, away from the person who would diagnose the thing. The person who would fix it – fix me – and make my life the way it was before.

That was until a few months ago, when I went for a routine checkup with the consultant at my pain clinic (neither of which I will name here). The appointment did not start well. The consultant, a surly man, seemed to take an issue with my blunt tone, and how unhappy I was about my treatment. He asked me what I wanted from them. To get better, I thought. Instead, I explained that among my ever-changing symptoms was a strange anomaly: when I bend my head down to change my daughter’s nappy, I get an uncomfortable, prickly heat sensation through my abdomen and down my arms. Surely, I thought, there must be a physical reason behind it. Something in the spine, a pinching somewhere. That, I thought, couldn’t be just in my head.

I don’t recall the exact details of the rest of the conversation because of my emotional response to what happened next. At some point, after condescendingly explaining that “all pain is psychological”, the consultant made a joke: “If you really want the pain to go away, I could give you a hammer, and you could take it to your big toe.” I think he was making a point about attention. All I heard was a medical professional, inside a pain clinic, making a self-harm joke towards someone who had been recently suicidal. Incensed, I confronted him about it and complained formally to the hospital. He later apologised, but the damage was done.

It’s funny: a few months earlier, that interaction might have sent me into another spiral. But, to my surprise, in the weeks after the appointment, something inside me lifted. I finally accepted that, as well-meaning as the medical professionals might be, they were no longer really trying to make me better. Not better in the way that I intended. To them, I was a lost cause. The sensation was not of failure, but of closure.

Antony Chuter, an ambassador for the charity Pain UK, describes this realisation as passing through the “first stage” of living with chronic pain. The processes that pain patients go through – anger, denial, depression – he told me, are akin to grief. Rather than another person, I was grieving my former self. The next step, as Chuter put it, is about self-actualisation: the realisation that, long-term, the only person who is going to make me better is me.

A few months ago, at the urging of my excellent new physiotherapist, I started reintroducing the hobbies I had neglected for so long. I bought myself a new guitar; I threw myself back into playing with my kids; I started to make an effort to go out more with friends, and even play sport occasionally. I anticipated that most of those things would lead to agonising flare-ups. Instead, my life, and my mood, improved measurably. And, because pain intensity is so clearly linked to emotion, as my mood has lifted, so has the pain.

Pain researchers now understand that the key to recovery from chronic pain is neuroplasticity: finding a way to retrain the brain through a combination of cognitive behavioural therapy and other methods, to try to desensitise the nervous system. To convince my body that it is no longer under attack, and close the gate for good. Pacing, as pain therapists call it – short bursts, here and there – is crucial. But so, too, it turns out, is joy. So now whenever Edith (these days a vivacious two-year-old) needs me, I hold her as tightly as I can.

The pain isn’t gone – it may never be gone; I know that. But, for now, it doesn’t have control. I still have so many questions that remain unanswered. But I’ve learned that even if I can’t rid myself of pain, I can at least ease the suffering.

• In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is at 988 or chat for support. You can also text HOME to 741741 to connect with a crisis text line counselor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org

• Oliver Franklin-Wallis’s book Wasteland: The Dirty Truth About What We Throw Away, Where It Goes, and Why It Matters is published by Simon & Schuster on 22 June at £20. To support the Guardian and Observer, order your copy at guardianbookshop.com. Delivery charges may apply.

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