How do we learn to live a life in pain? For the one to six percent of the English population living with chronic pain that has no clear underlying cause, the latest NHS guidelines don’t offer much more than encouragement to do exactly that.
The recommendations from the National Institute for Health and Care Excellence (NICE), published in April, lean towards non-pharmacological treatments for patients with chronic primary pain, including acupuncture, exercise, and behavioural therapies that encourage patients to “start practicing more confident and optimistic behavior”. GPs are advised to avoid prescribing painkillers of any kind and should consider offering antidepressants, “even in the absence of a diagnosis of depression”.
Patients have been assured they will not be forced to stop taking current medications, but told they should “ask their doctor to review their prescribing as part of shared decision making” and that they will be offered “alternative, safer and more effective options”.
New NICE chronic pain guidelines met with disappointment and fear
The guidelines have been met with disappointment and fear from chronically ill and disabled communities, who question the accessibility and plausibility of non-pharmacological treatment options. Writer and campaigner Dr Frances Ryan highlighted her three-year referral time for physiotherapy after becoming bedbound with post-viral fatigue, and questioned the readiness to prescribe antidepressants, which can also have serious side effects and withdrawal symptoms. My own experience as a sufferer of chronic pain is of delayed referrals and disbelief when seeking treatment, adding a further layer of stress and prolonging the time spent without help.
There is uncertainty around who exactly the guidelines will affect, exacerbated by NICE’s definition of chronic primary pain as having “no clear underlying condition or the pain (or its impact) appears to be out of proportion to any observable injury or disease”. This is set up in opposition to chronic secondary pain, which can be accounted for as the symptom of another illness. The definition is at odds with the World Health Organization, which in 2019 defined chronic primary pain slightly differently as:
persist[ing] for longer than three months and… associated with significant emotional distress or functional disability and that cannot be explained by another chronic condition. This new definition applies to chronic pain syndromes that are best conceived as health conditions in their own right (my emphasis).
Examples of chronic primary pain include fibromyalgia, complex regional pain syndrome, chronic migraine, irritable bowel syndrome and non-specific low-back pain — all of which are health conditions ‘in their own right’. Additionally, a person can have both primary and secondary chronic pain.
Gaps in how we respond to pain as a society
But surely all pain has a cause that can subsequently be attributed to a particular condition? I put this to Dr Sam Finnikin, an academic GP researching and teaching shared decision making, who said: “I think what they’re trying to get at is there’s no clear structural cause or tissue damage detectable, or demonstrable underlying cause. But it’s not easy to define it in simple terms… they are trying to simplify a very complex problem.”
In addressing the complexity of defining chronic primary pain, gaps emerge not only in understanding of causality and treatment, but how we respond to pain as a wider society. As many chronic pain patients know, a diagnostic journey has several hurdles. Once completed, patients must face living with a diagnosis for which there is no cure, only treatment (subject to availability). We also understand the toxicity and reduced effectiveness of painkillers over time, but for many of us these medicines are vital to basic functioning. As sociologist Dr Emma Shepperd says, “being able to function with chronic pain might in effect mean being addicted to painkillers but you weigh the costs up.”
Further, the two types of psychotherapy the guidelines encourage are not short-term solutions, nor is the wait time for them. When referred to the adult mental health service Improving Access to Psychological Therapies in England, 75% of people start treatment within six weeks, and 95% start within 18 weeks. The NHS offers CBT courses of “between 5 and 20 sessions, with each session lasting 30 to 60 minutes” once a week or every two weeks. CBT and ACT can benefit pain patients (according to the small number of studies NICE reviewed), but can take years to fully embed in a patient’s thinking and work through complex traumas. This will do little to alleviate the immediate suffering of someone who is bedbound, flaring, or in crisis.
No matter how positively you frame it, having to accept a life in pain is unacceptable
As someone living with chronic primary and secondary pain conditions (fibromyalgia and endometriosis, respectively), I’m learning to accept that I won’t get better. This is not through lack of will or action in pursuing multiple pharmacological and holistic treatments, which I am fortunate to have the resources to explore, but because chronic pain is exactly that — chronic. I’ve been in various therapies, and on and off antidepressants, for over a decade, but I’m still in pain. I can reframe my thoughts, do yoga, have massages, and eat well, but my body is still in pain. This is not a unique experience.
One of the reasons NICE’s guidelines have attracted criticism is because, no matter how positively you frame it, having to accept a life lived in pain is unacceptable. Rather, the medical profession should prioritise a social model of health, grounded in a disability justice framework and the social model of disability, which examines disability and ableism in relation to other structures of oppression (including race, gender, class, sexuality, and citizenship) to truly improve patient outcomes.
NICE’s guidelines are a smoking gun that may trickle down to practice level, depending heavily on whether there is resource to implement them. What they have highlighted is the need for the government, workplaces, and other capitalist structures to recognise that some people get ill and stay ill. Those in structures of societal power should accommodate all sick and disabled bodies to make our experiences of living in pain a fraction more tolerable, not expect us to simply accept our pain.
Jennifer Brough is a writer and editor living in Birmingham. She writes fiction, reviews, and personal essays exploring the body, gender, pain and disability, and art. Her work has most recently appeared in Luna Luna Magazine, Artsy, and The Debutante.
Jennifer also curates submissions for Sisters of Frida and is a founding member of resting up collective. You can read more of her work at jenniferlbrough.com.