Betsan Corkhill, Wellbeing coach

Published in JHH17.2 – Mind-body self-care

Words can set a person down a path of fear and catastrophisation or start them on a journey to wellness and recovery. Click To TweetIn 2016 I was given the opportunity to run my own pain management programme outside the NHS. In thinking about what I would like if I had ongoing pain, I took a long hard look at the language I was routinely using. This told me I would want to learn how I could live well with pain, and not just ‘manage’ it. So I changed the name of my course from Wellbeing for People in Pain to Wellbeing for People with Pain. To speak of being in pain is disabling, because it implies the pain is bigger than you are. The priority should be to create health and improve wellbeing, to enable people to live more fulfilled lives. This will depend, above all, on enabling a person to imagine they can change. Words shape our imagination for better or for worse.

The language we use creates expectations

One pain management programme begins with introductory words from the course leader. ‘We’re not here to fix your pain. We will be teaching you coping skills to manage your pain, and learn about self-management.’ The overview, outlined in the first session, covers ‘learning to live with pain’, and emphasises the importance of ‘pacing’.

Another programme is called a Pain Education Programme. The slide that participants see as they enter the room says HOPE in large letters. In the introductory session the course leader says, ‘I expect your pain to improve’. and ‘I expect your mobility to improve’. It requires confidence, energy and most importantly a healthy practitioner to so boldly state these things.

The language of pain

Those who use hypnosis already know the extraordinary power of words. Words get into our subconscious, they permeate our thoughts, become our ideas, our story. Words can change the very nature of pain and our understanding of it. So it’s time to start using our language to create positive expectations, change perceptions deliberately promote healing, wellbeing and active recovery.

What you hear goes straight into your imagination.

Gillian Reynolds, radio critic

Language shapes our ideas and how we perceive our world. Yet as professionals we can get so used to medical language that we cease to consider how these words affect our patients. Words can set a person down a path of fear and catastrophisation or start them on a journey to wellness and recovery. People living with pain rely on our words to make sense of their symptoms. The words we use will shape their expectation of what the future holds, and these expectations will have a real impact on their health, wellbeing and outcomes.

Hospital letters to GPs are copied to patients. No doubt most won’t have understood what their doctor told them. Perhaps such arcane and complex language is a way of distancing doctors from those they treat? But surely our language should always be comprehensible, factually correct, plain, everyday English. Many people have brought me their letters to translate. They are not always well written, and their spelling and errors don’t convey competence.

Words in pain

The following words were said to patients or overheard by clinicians listening to colleagues.

• Now what is it that makes you feel the need to be unwell… my dear?’ Said to a woman with ME. Are those with ME/chronic fatigue/fibromyalgia more likely to hear this type of language because these conditions are not well understood?
• I don’t know why you’re so worried. You already have a wheelchair.’ Said to a woman with ongoing pain who had broken her ankle and was concerned it wasn’t healing as it should.
• Dress for your disease…my dear.’ Said to a woman with rheumatoid arthritis.
• Basically, your father’s head is falling off.’ Said to the daughter of a man with severe dementia who was no longer able to hold his head up. I’m happy to say, good physio remedied this.

Then you have the more subtle such as:

• You have to stop gardening.’ Again I’m happy to say this woman is now back gardening and enjoying it.
• You’ll end up in a wheelchair.’ Said to a man with newly diagnosed psoriatic arthritis. Based on this comment, he resigned from work so he and his wife
  could enjoy what was left of his ‘walking years’. Yet there’s actually a good chance that he won’t end up in a wheelchair.
• Rest until it calms down.’ I once met a woman who had been in bed for 40 years following a minor back injury at 18. She was still waiting for it to calm down.
• You no longer fit our criteria.’ How soul destroying is this to get in a letter? Yet it is being used increasingly as overstretched services struggle to cope.

Words have a greater impact when they come from the expert. So when the expert uses the wrong kind of language it can be very difficult to persuade people
otherwise. Recently I had a conversation with a woman about the benefits of movement. ‘Aaah’ she replied ‘but that doesn’t apply to me because my consultant told me I have two vertebrae out of line crushing my nerve’. These words create powerful images in our minds. What kind of message did she take away from that? ‘If I move, it may damage my spinal cord.’ ‘I have to protect my spinal cord at all costs.’ When she gets pain in the future will she think her vertebrae have moved again? She is in a state of constant hypervigilance and stress.

Words of war

Military language frames pain as an invisible enemy, with the patient like a soldier, going into battle against this enemy you can’t see or hear, who can creep up on you in the middle of the night, or suddenly ambush you. This enemy, who is out to damage you, has powerful friends it can call on to inflame your body and confuse your mind with fatigue. It thrives on making you suffer. Worst of all, no one else can see it, and your words cannot fully describe it. In fact your friends are so sick of you trying to explain, they’ve deserted you. Others think they know what it feels like, but no one really does. You feel very alone.

When you have an enemy like this you can never relax, never sleep, never have fun. Your body becomes a battleground and you lose touch with the you that is you. Nothing and nowhere feels safe. You lose hope, feel defeated, you soldier on, barely surviving, always searching for that magic bullet. Life is so exhausting when pain is your enemy, so you set out to fight this enemy and are determined to beat it with an ever-expanding arsenal of painkilling weaponry. But the harder you fight, the harder it fights back. Pain is the enemy you live with every day… every hour… every moment of your life. It disables you, stabs you, crushes and pinches your nerves, burns you, shoots down your legs, blinds you with headaches so severe, it makes you sick.

Even in rare moments without your enemy you have to be vigilant, waiting for it to return, flare up and get angry; particularly in dark hours when you are vulnerable and alone. This evil enemy makes a point of attacking you when you are at your weakest – stressed, ill, low, depressed, anxious – so you have to be alert at all times. Hypervigilant, you start to predict, and anticipate when and where your enemy will strike so you can avoid those situations.

The battlefield

People don’t lose ‘a battle’ with disease. It’s not about winning or losing based or how hard they fight. Yet when a problem can’t be fixed it can make everyone involved feel like a failure. It would be reasonable to think that this fight and flight/win/lose/fail narrative would interfere with healing and quite possibly contribute to clinician burnout.

In reality war means chaos, destruction and uncertainty; no safety, more stress, tension and pain. Given that our goal is to alleviate suffering and help people heal, this widespread use of war-like language is ironic: war is no place to begin a journey towards recovery and healing. To associate pain and suffering with warfare will only serve to generate fear, worry, anxiety, hopelessness and despair. This language prepares people to fight, run, freeze, flop. Yet paradoxically, the more threatening we perceive our world to be, and the more we look out for threat, the more likely we will be to reach catastrophic conclusions and become ever more alert to symptoms.

Pain research and development

Even though this viewpoint of disease might bias medical researchers, narrow their focus and close off alternative research questions, they continue to work within the assumptions that this language framework creates and perpetuates. They might call a group of research subjects a patient cohort, yet be unaware that a cohort was a military unit in ancient Rome, comprising six centuries, equal to one tenth of a legion.

Do pharmaceutical companies have a vested interest in promoting war-like words to reinforce the assumption that drugs – eg painkillers – should be seen as weapons? It is after all a view that invites us to keep trying the next drug, to fire off a new weapon, in a fight to the bitter end with every weapon at our disposal. In this scenario the doctor, as the ‘commanding officer’ may be tempted to overmedicalise and over treat.

Be strong?

The soldier (or doctor), constantly at war (with disease and death), has to appear strong and hide weakness. It encourages people to suppress emotions in the belief that the enemy will pounce on your weakness. To pull up the drawbridge even if it means missing out on the things that make life worthwhile – fun, play, laughter, curiosity. Viewing a person’s body as a battlefield may keep clinicians from seeing the person behind the label and the anonymity that ensues is unlikely to help heal the person with pain nor those whose job it is to treat them. It comes as no surprise that women with breast cancer who ‘ascribed negative meaning of illness with choices such as “enemy”, “loss” or “punishment” had significantly higher levels of depression and anxiety and poorer quality of life
than women who indicated a more positive meaning’. (Degner et al, 2003)

To associate pain and suffering and warfare will only serve to generate fear, worry, anxiety, hopelessness and despair.

Another perspective

Our goal should be to enable the people we treat to use words that work for them within the context of recovery. Perhaps we need to find different words for pain? The Welsh word for pain is poen, like the latin poena meaning punishment, retribution or penalty but we have a different word for pain following exercise. ‘Scrwb’ (scroob) is a word that carries no danger and is often said with a shrug of the shoulders, that attributes insignificance: ‘It’s just a bit of scrwb’. That shrug of the shoulders is really important.

Advertisers understand not only the power of words but how most effectively to shape and colour them. Notice that sharp fonts, shapes and certain colours are more likely to be linked to stress, anger, shouting, pain, whereas more rounded shapes are more comforting and calming.

It’s difficult to change the words people use yet the field of HIV has already moved from the language of war to one of care and healing. A similar process is starting with type 2 diabetes which is now being talked of as curable if you focus on improving health. Those who are reversing their type 2 diabetes aren’t battling or fighting their disease. They are not making a battleground of their bodies. They are doing the opposite. They are focusing on assets – on improving lifestyle, wellbeing and health.

…nurturing compassion in our language and communications will be good both for patients and practitioners

Dehumanising words

Do we want to kill and destroy, or to restore and heal? Can we avoid using language that dehumanises. Can we stop speaking about ‘pain patients’, asking ‘how’s the back?’, saying ‘I saw a difficult knee today’, diminishing frequent flyers’, bed blockers’, labelling someone as ‘bed 6’, ‘a fibro patient’, ‘a migraineur’? People have their reasons for labelling themselves too. Identifying oneself as a ‘fibro warrior’ or ‘a mesh injured patient’ does little to promote health, wellbeing or hope.

This type of language stops us seeing the person, and encourages us (and them) to over-identify with their disease. Set alongside increasingly automated, impersonal letters this kind of labelling sends a powerful message that medicine is industrialised, impersonal, that the person behind the label is somehow irrelevant. In reality, because the human healing processes are enhanced when we feel more engaged and connected, recognised and cared for, nurturing compassion in our language and communications will be good both for patients and practitioners.

Moving people from this

to this

 

 

 

 

Notice pain is still there on the list, and that recovery isn’t about eliminating pain.

Painful words

X-rays and scans – our comments on X-rays and scans often use terms like ‘wear and tear’, ‘bone on bone’, ‘damage’, ‘entrapment’, ‘degeneration’, ‘unstable’,
‘crumbling’, ‘twisted’, ‘crushed’, ‘slipped disc’, ‘soft’, ‘pinched nerve’, ‘vertebrae out of line’. Their implications of degeneration and imminent destruction, will lead many people to avoid pain at any price and in particular to stop exercise, or even to take to their bed.

What would happen if instead we said something like this:

I can see there are normal changes due to getting older, but these are nothing to worry about. Your joint may have become extra sensitive and feel painful, but you won’t do it any harm by moving. In fact, moving will help to strengthen and lubricate your joints and muscles… and you’re pretty good at self-healing – just think back to when you last cut your finger. There is always a lot of repair going on here in the joints too.

Trapped nerve – take for instance how the term ‘pudendal nerve entrapment’, fills the mind with images of a nerve that’s likely to be trapped and stretched whenever you move. In reality, as David Butler and Lorimer Moseley say, ‘Pinching a nerve is like trying to pick up a lychee with chopsticks’: they’re slippery, slidey, elastic. Although they may become very sensitive to movement they are rarely, truly crushed, trapped or pinched, in fact many people improve from sciatica without there having been any changes on their MRI.

Goal setting – can become problematic if it encourages a fixated striving for the end goal that excludes the many small things that make life good and special.
Flexible goal setting sets a direction while also valuing increasing enjoyment of life. One woman on my programme said, ‘I’ve realised I don’t have to be miserable. I can have fun’. It’s about going with the flow of life; having your direction, but recognising that life events, unforeseen circumstances and new opportunities can require changing it. This less driven viewpoint can better cultivate compassion for self and others.

Self-management – implies constraint, whereas ‘selfnurture’ or ‘self-nourishment’ suggest growth and healing.

Pacing – has a limiting flavour when compared to the term ‘activity planning’. Even better is the notion of ‘baselining’– a term from project management. A baseline is a point of reference from which to set a direction (goals), taking into account all available resources, financial, social, support networks or knowledge, all of which may change over time. The viability of any treatment plan depends on fitting it into real life, with all its shifting demands. This changes the focus on symptoms as lifelimiting, to one of where they don’t stop life moving forward to the same degree.

Let pain be your guide – Physiotherapists learn to say ‘let pain be your guide’. But stopping every time you feel pain rather trains people to move less, and so
unwittingly to become stiffer and less mobile.

Chronic pain – It’s good to see a move away from the term ‘chronic’ because it suggests ‘intense’ to many people. But the replacements are problematic too –
‘persistent’ implies unending and without a break; longterm has an almost equally interminable feel too. The term ‘ongoing pain’ on the other hand makes no
prediction about permanence or severity, and gives at least the possibility of relief and some room for hope.

Exercise more – when problem words get caught up in someone’s pain maps they can actually trigger pain. Exercise is one of these words: you can see people visibly tense up when they hear it. discussing the possibility of increasing activity is a better way of approaching the subject.

Moving forward

Words can hurt, words can heal. The language we use conjures up a context. By speaking about pain as the enemy which must be fought, we weave a spell that shifts a person into flight and fight mode. We are more likely to trigger the mind–body’s recovery and healing systems if we act and speak in ways that explain the experience of pain without resorting to battle metaphors. In healthcare it’s time we used our language consciously to create positive expectations, change perceptions, and so to deliberately promote healing and active recovery. For this to come about we will have to create places of safety and compassion where this can happen. Can we re-imagine a better healthcare future together?

References

• Degner LF, Hack T, O’Neil J, Kristjanson LJ (2003). A new approach to eliciting meaning in the context of breast cancer. Cancer Nursing, 26(3) 169–178.