The Aword

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Communicating with a person with Chronic Pain

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"We minimise another's loss when reminding him or her that others suffer too." Dr. Ann Kaiser Stearns.

People in pain may talk in a kind of ?code' in which nothing is at all clear and there is frustration on both sides.

The following communication tips may help:

1.                  Listen: this may involve ensuring no distractions and ensuring focussed attention, and even ?reading between the lines': Bernard Lowen notes that "the majority of people's complaints are relatively straightforward, detectable to the ear cultivated to listen to the inaudible sigh, visible to the eye sensitive to the unshed tear."

2.                  Be genuine: it isn't much fun listening to someone talk about being in pain, so don't undertake to listen unless you're really prepared to do so willingly. Only listen for as long as you want to; 5 minutes of proper listening is better than 20 minutes of reluctance and you don't have to have all the answers.

3.                  Be aware that the sufferer may be reluctant/afraid to say how they are feeling: they may wonder what the point is, or worry that you won't believe them; they may understate their pain. "I feel fine" may be their way of avoiding the issue and have no real bearing on the pain they are experiencing.

4.                   Look for non-verbal clues such as pale, drawn face, sweating, lack of facial expression, generalised body tension, holding the body still, restlessness, sleep disturbance, difficulty concentrating, irritability, decreased activity, depression; Chronic pain sufferers tend not to show obvious signs such as wincing, grimacing, moaning (except with acute exacerbations such as muscle spasms) which ?healthy' folk might show if they injure themselves, for example. Depression may lead to reduced expression of pain.

5.                  Believe the person: not being believed adds to the level of suffering considerably. It is a myth that chronic pain sufferers exaggerate their pain to gain sympathy or avoid responsibilities

6.                  Ask ?helpful' questions, which can stimulate hope: specific or open-ended queries may convey your understanding and desire to help. Asking the person to rate their pain on a scale of 0-10 (see below) may help. Being asked the right questions allows the pain sufferer to talk about their pain.

7.                  Avoid thoughtless comments: throwaway lines such as "you don't look sick" or "you'll just have to learn to live with it" are unhelpful and may be damaging; fear and anxiety don't motivate constructive behaviour.  For someone at the end of their tether, a comment such as, "You have done incredibly well to cope" may help to evoke a sense of strength and determination to carry on.

8.                  Be compassionate: As Bourne wrote([1]): "There are sympathetic doctors, relatives, and friends who expect the patient to be brave, stoical, and cheerful. In the end the patient yearns for less exhortation and more compassion. Compassion is an important consequence of comprehension of the existence and nature of arachnoiditis." 

9.                  Be honest about the limitations of your own knowledge; don't pretend you have all the answers! Sometimes well-meaning advice can be inappropriate if it isn't based on understanding of the condition.

10.              Bear in mind that chronic pain is not the same as any pain you, as a healthy person, have experienced. Neuropathic pain such as that in arachnoiditis is a particular type of pain not experienced by people with an undamaged nervous system. It causes severe, unremitting pain and this is often resistant to treatment. It may also cause bizarre symptoms which seem unlikely, such as pain in numb areas.

[1] Bourne IHJ Journal of the Royal Society of Medicine 1990 April 83 Lumbo-Sacral adhesive arachnoiditis. A review.