I very rarely come across someone with chronic pain who isn’t suffering from trauma – not the catastrophic injury kind of trauma, but the kind of development under stress kind that leads to the trauma world in later life.
Making the link between chronic pain and trauma, as I often do, divides audience between those for whom it validates their experiences and those for whom it invalidates the all-too-visceral nature of their suffering.
The validation / invalidation divide is often so powerful that any attempt at paddling backwards to explain what I mean often further alienates people who have previously experienced the pain of invalidation.
Professor Paul Dieppe, a retired rheumatologist who has become increasingly interested in pain, suffering and healing, explained to me that invalidation is a more powerful force for harm than validation is a force for good and my experience has taught me that this is true. It is very hard to regain trust from someone who has experienced invalidation by your words or behaviour.
Trauma informed care is sometimes assumed to mean clinical practice in which past traumatic experiences are used to explain present symptoms. This is untrue and an unfortunate misrepresentation – unfortunate because recounting past experiences can be traumatic for patients and clinicians; unfortunate because the links are long and complex and far from being fully understood; unfortunate because it can lead to the assumption that people with a history of trauma need psychotherapy but not immunotherapy; unfortunate because of the profound shame and stigma associated with past trauma; unfortunate because trauma informed care can and already is, radically transforming care for the better.
A useful definition of Trauma Informed Care is the 4 Rs.
- Realises what we mean by complex trauma and toxic stress; how prevalent traumatic experiences are and who is most at risk (women, people living in poverty, people with disabilties, ethnic minorities and other marginalised and stigmatised groups)
- Recognises the signs and symptoms of the trauma world – the hyper/hypo arousal, toxic shame, dissociative symptoms and coping strategies used by those who are affected
- Responds in ways that prioritise safety and trust, show empathy and understanding and enhance the potential for healing
- Resists any ways of behaving that might re-traumatise people
It’s worth noting that trauma informed care is an organisational and an individual approach to working and not something that you do with certain patients. It’s a way of working with everyone.
So why bring up Chronic Pain?
I’ve recently looked through records of patients registered at my practice to identify those that are suffering with chronic pain. First I looked everyone diagnosed with chronic pain and associated problems like Fibromyalgia and Chronic Regional Pain Syndrome. Next I looked at all the notes belonging to patients prescribed opiates, Gabapentinoids and tricyclics – the most commonly used drugs for chronic pain. I went through the notes to see whether they were taking the medication for chronic pain. In total I identified nearly 550 patients accounting for about 4% of the practice – making Chronic Pain the fifth most prevalent long-term-condition after Hypertension, Depression, Asthma and Diabetes. On average patients with Chronic Pain contacted the practice 33 times per year, 3 times more than average. I asked patients and colleagues what to include in an annual review and I am trialling an annual review lasting 20-30 minutes with their usual GP.
The new NICE draft guidance for chronic pain has a definition of chronic primary pain as ‘characterised by disability or emotional distress not better accounted for by another diagnosis of chronic pain.’ In practice it seems to make little difference whether someone’s chronic low back pain can or cannot be explained by osteoarthritic changes on an X-ray or disc-degeneration on an MRI scan. Whether there is another diagnosis to account for the pain makes little difference to the degree to which the pain can be tolerated or is unbearable. A pragmatic definition that I used in defining Chronic Pain for my patients was, ‘Pain of any cause that is hard to bear and is the primary reason for repeated consultations’. Conditions like arthritis, fibromyalgia, chronic pelvic pain (including endometriosis) and irritable bowel syndrome may be included, so long as pain is the primary issue for repeated consultations.
Pain and the Trauma World
The Trauma World is a description of the problems people live with as a result of growing up under conditions in which their threat response, a set of protective, primitive reflexes is chronically, repeatedly or severely activated. Developing bodies and the biological systems within are remarkably resilient, but under sufficient stress, especially at certain critical times for example in utero or infancy, they are susceptible to lasting effects. If protective, buffering factors like maternal bonding and emotional intimacy are absent then less severe stressors may have lasting impacts. Immune/ autoimmune, neurological, gastrointestinal, cardiovascular and other symptoms are activated by the stress response – that results in symptoms including palpitations, rapid breathing, vasodilatation and sweating, fearfulness, dyspepsia, nausea, the urge to urinate and defecate, and if severe can lead to collapse or fainting, blackouts, seizures or other dissociative symptoms. Growing up in a situation of helplessness, where fight or flight is impossible and there is nowhere safe to go for comfort or protection leads to this biological over-activation being internalised, only to cause problems later on, sometimes decades later. The shame and stigma, disbelief and invalidation that often accompanies the these stressful situations, mean that even as time goes by it may very difficult to talk about what has happened, and this is as true for childhood neglect as it is for domestic violence. More often than not, it is sufficient to acknowledge that stuff happened without trying to catalogue the details.
It follows from this that everyone experiences some degree of stress growing up and some traumatic symptoms later on, but there is a dose-response whereby more severe threats and fewer protective factors lead to more problems in later life. This is why many patients present with multiple related symptoms, for example – chronic dyspepsia with irritable bowel syndrome, chronic anxiety, urinary incontinence, and autoimmune diseases like SLE or Psoriasis in addition to chronic pain. Patients with chronic pain alone may have been fortunate enough to have suffered less developmental adversity, but very few of our patients with chronic pain, suffer only from chronic pain.
To return to the 4Rs of trauma informed care in relation to patients with chronic pain.
- Recognise that the burden of chronic pain is unevenly distributed – women, people living in poverty, people with disabilties, ethnic minorities and other marginalised and stigmatised groups are disproportionately affected.
- Realise that chronic pain rarely occurs without other manifestations of the trauma world including autonomic dysfunction, chronic anxiety, gastrointestinal and urinary symptoms, autoimmune diseases, dissociative disorders and shame.
- Respond in ways that seek to provide kindness where there has been cruelty, validation where there has been disbelief, vindication where there has been blame and continuity of care where there has been rejection and a lack of commitment
- Resist re-traumatising patterns of behaviour including invalidation and blame
I have learned the hard way that patients don’t want me to explain pain or trauma. I tried and they told my in all sorts of ways to stop. It’s their pain and their trauma, my job is to understand it better. The desire to ‘painsplain’ is born out of insecurity and wanting to reassure them that I know what I’m talking about. I’ve learned the importance of ‘asking the questions whose answers need to be listened to’ and that ’empathy is always poised between gift and invasion’ (thank you Leslie Jamieson). I need to keep remembering that patients will forget most of what I say, but rarely ever forget how I make them feel.
Trauma Informed Care is a journey, not a destination. We’re trying our best, and although there are many inspiring pioneers, these are uncharted waters and only by working together will patients and clinicians find our way.