Ant McPartlin’s “drug hell”, the headlines said, so I clicked – as we all do – to see what it was, the naughty habit that had got out of control and pitched a national treasure into rehab. And then I read the story. A knee injury. A botched operation. Two years of chronic pain. A painkiller addiction, depression and substance abuse. And I realised, this wasn’t drug hell; it’s the natural progression of chronic pain in this country.
Up to half the British public suffer from chronic pain, according to a systematic review in the BMJ last year. Back pain is the second most common reason for taking time off work. GPs prescribe 65 million painkillers each year. Ten per cent of over-35s take analgesics almost daily. And yet the NHS fails its patients with every prescription. Doctors don’t really understand chronic pain, can’t cure it, so they brush it under the carpet. Unfortunately, patients in its iron grip cannot do the same. It leads to depression and addiction, and tears lives apart. It kills people. I know this because it nearly killed me.
McPartlin is said to have started his descent into chronic pain with knee problems. Mine was as mundane as it was devastating – as I reached for a cup of coffee one day at work in 2012, something slipped in my neck and crushed a nerve. It felt like a carving knife had wedged in my armpit and a fire had sparked in my arm, across my shoulder blade and up to my neck. It was so intense, so sudden and so brutal that it was almost reassuring. This was an injury, I assumed, that could only get better.
But that was before I knew how the NHS treats chronic pain.
I got no painkillers from the GP I saw the next day; just instructions to rest my arm for a week. At the end of the week, I got a sick note. It would be a couple of months before I got a prescription for painkillers. There’s evidence that if pain circuits can be dampened down quickly, they can reset themselves. But since pain by default isn’t considered “chronic” until it’s lingered for a couple of months, by that time, you’ve missed the window. For me, it was too late.
Pain is meant to be good for us – acute pain is a signal from the brain telling us to take care of a body part. It’s a circuit that’s designed to switch off as we heal. But in those of us with chronic pain – about one in 10 unlucky injuries – the circuits keep firing. Then they start spreading – because the brain operates on a use-it-or-lose-it basis. In the same way that you forget your schoolgirl French if you don’t keep it up, if your pain circuits keep firing, they strengthen. They spread. Then they begin to overwrite other parts of your brain. It’s a conundrum – unless it’s nipped in the bud before it gets chronic, chronic pain gets worse.
Doctors haven’t agreed how to fix this yet – and I can handle that. I know science has its limitations. What I cannot handle is how the medical establishment – the NHS in particular – tackles chronic pain.
By the time they notice it, the pain circuits have already begun to smother the brain. And when they diagnose it, they don’t say, “We don’t know enough to pull you out of this right now, but hang on tight.” Instead, they say, “We don’t really know what’s going on in your brain, so you have to accept that you’re never going to recover.”
Finally, too late, they prescribe us the painkillers – those addictive opioids, second cousins of heroin (methadone isn’t entirely unheard of in pain relief). The “30 rule” means that they’ll only reduce pain by 30 per cent in 30 per cent of patients, but they prescribe them anyway, these drugs that we need more and more of as our bodies get used to them, these drugs that can turn a tolerance into an addiction, that can ruin our lives. And they send us on pain management courses, whose raison d’etre is to tell us that we’re never going to get better, that we must redraw our lives in the cage we’ve been locked into. They teach us CBT to think positive, “despite the pain”.
We’re not going to try to cure you, but hey, turn that smile upside down and it may not seem as crushing. If they treated any other illness like that, there would be national outcry. But for some reason – maybe because chronic pain patients can’t understand what their body is brewing either – we say nothing. We swallow our pills. We practise positive thinking.
You have to accept you may never get better, one pain specialist said to me. Stop talking about getting back to work, and think about how you can live as you are.
It’s unlikely you’ll ever write again, my rehabilitation consultant told me, handing me a book about career changes. Think of a job you can do without your hands.
It’s OK, they said, you don’t have your salary, but there are disability benefits (I received £86 a week.)
For my first two years of chronic pain, I listened to my doctors. I tried their medicines, I tried physio, I went on a pain management course and a rehabilitation course. I had counselling. I had CBT. And I wanted to die.
I didn’t have a life – I was in too much pain to have one. I couldn’t cook, I couldn’t clean, I couldn’t chop vegetables, I couldn’t wash my hair. I couldn’t wear clothes with buttons, I couldn’t hold a book, I couldn’t write a one-line email. I couldn’t go out to see my friends. I couldn’t watch TV because my “sitting tolerance” was less than two minutes.
As McPartlin is said to have done, I spent much of my time lying on the floor – the pink carpet of my childhood bedroom, in my case, because I had had to move back in with my mum. Every day, I tried to work out the easiest way to die. Luckily, I was in too much pain to do anything about it.
My crunch point came when I was discharged by the eighth consultant to say he couldn’t help me. This time I got angry. I decided to look for a cure elsewhere. I used my contacts as a travel journalist (then money when I got a book deal) to see what other cultures could offer the chronic pain patient. I got exorcised in Haiti and bathed in chicken blood in South Africa. I had my neck vertebrae manipulated in China and got stoned in Colorado (incidentally, of all the drugs I took in those four years, the only one to help my pain was cannabis). I wasn’t religious but I even went to Lourdes.
I found my cure, of course – I wouldn’t be physically capable of typing this if I hadn’t, let alone doing the 14-hour days I regularly work in my current job. It took four years to find it, and it was an unorthodox treatment in Brazil that did it for me, that I won’t go into here – not (just) because I want you to read the book, but also because I think every body is different and every brain is different, and what my research has taught me most of all is that what works for one person might not work for another. I don’t want to give unnecessary hope.
But I absolutely believe that chronic pain can be cured, and I absolutely believe the way the NHS treats chronic pain is killing patients. Researching my book, I met pain experts: a Harvard professor working on treatments like stem cells and cannabinoids; a US government psychiatrist who says neither opiates nor operations are the answer (too many drugs and they stop working; too many operations and they can make the pain worse). A psychiatrist in San Francisco using the precepts of neuroplasticity – the idea of the ever-changing brain – to show how the accepted narrative that chronic pain is irreversible is ridiculous. It can, in fact, retreat exactly the same way that it came.
This work isn’t secret, and these ideas are already being practised, yet the NHS persists with its lethal “pain is forever” message. When I mentioned neuroplasticity to one of my specialists, in the depths of my pain, he laughed me out of the room. Another suggested I find a drug dealer.
I was so lucky – that my body rejected every painkiller I tried before I got addicted, that I had a support network, that thanks to my work I could look for an alternative, that I’m so bloody-minded that instead of accepting what the doctors were telling me, I got angry and decided to prove them wrong.
Most people don’t. In March 2015, Julia Kelly, a 39-year-old from Northampton with chronic back pain, killed herself. In May 2016, 86-year-old William Hagar from Florida shot his wife of 50 years in her sleep because they couldn’t afford her pain medication anymore. Chronic pain patients are 14 times more likely to kill themselves than the average patient. And I think the way doctors treat our pain is a major part of that statistic.
In a way, McPartlin is lucky, too. He appears to have gone private, saving the waiting time that can turn an unpleasant blip into a life sentence. He’s a man – women have to go through an average of 12 doctors before they find one who will treat their pain adequately, because male doctors are twice as likely to ascribe female pain to psychological disturbance. He’s white: US figures, at least, show that African Americans are half as likely to be prescribed opioids as white patients, even though addiction and overdose rates are twice as high in whites. And he’s wealthy – across the pond, people with an annual income of $25,000 are twice as likely to suffer disabling pain as those who earn $75,000.
He is seeking help for his addictions; I hope that, next, he finds a way to break the pain cycle. I think he can – I think anyone can, once they find the treatment that works for them. Not that that’s easy. I think it’s a long road to recovery, filled with uncertainty. In fact, the only thing I know for certain is that the way the NHS treats pain is making things much, much worse.
I have been told I’m angry – I am. I’ve been told my anger is off-putting – I don’t care. I am furious. I boil with rage. I wish my four years of intractable pain on every doctor who deliberately overlooks our symptoms, underplays the havoc pain wreaks on our lives, hands us a prescription for antidepressants with a professional smile, strips us of our futures by telling us we’ll never get better. It wasn’t my pain that nearly killed me; it was the doctors’ blithe assurances that I was shackled to it for life.
We need a 180-degree change in how doctors in this country diagnose, treat and talk about chronic pain, and we need it fast. Because not everyone is as lucky as me or Ant McPartlin.
Heal Me is published in January by Weidenfeld & Nicolson