Lending an ear and respecting the narrative
MEDICAL MATTERS:Unexplained symptoms can cause much misery, writes MUIRIS HOUSTON
BERNADETTE IS a 36-year-old shop assistant with a 12-month history of recurrent abdominal pain and nausea for which she has sought help from a variety of doctors. During the 12 months of her illness she has consulted her GP on 24 occasions, has seen a gastroenterologist twice and a gynaecologist once, none of whom, despite repeated investigations, can find an explanation for her symptoms.
Bernadette’s story is typical of someone suffering from medically unexplained symptoms. It’s a hard place to be, especially if you are a person whose healthcare experience up to this point has consisted of going to the doctor with physical symptoms that have a ready diagnostic label.
Medically unexplained symptoms (MUS) are physical symptoms that have no currently known physical pathological cause. MUS are common, accounting for as many as one in five new consultations in primary care.
The unexplained symptoms can cause significant distress to the patient and, sometimes, impair functioning.
Research has shown that 20-30 per cent of consultations in primary care are with people experiencing MUS who have no clear diagnosis. A literature review from 2010 found that of the 10 most common problems which adults attend GPs for (chest pain, fatigue, dizziness, headache, swelling, back pain, shortness of breath, insomnia, abdominal pain, numbness), doctors can identify a recognised biological cause in just 26 per cent of them.
One of the most important issues for patients with MUS is that a doctor listens to their story. They must feel their symptoms are real and being taken seriously.
When a patient gives an emotional cue or directly expresses an emotion, it helps if the doctor works towards NURSing the emotion: Naming, Understanding, Respecting and Supporting it.
Also, doctors should provide clear explanations that link psychological and physical processes. Rather than identifying symptoms as either physical or psychological, it may be better to recognise symptoms as both physical and psychological.
Being told “there is nothing wrong with you – all the tests are normal” is unhelpful; a reassurance with unclear explanation has been shown to be ineffective and may exacerbate symptoms.
With MUS, often all the person is left with is their own illness narrative. This form of storytelling connects physical symptoms with their cultural, psychological or social context. With Ireland’s transformation to a multicultural society, doctors have had to learn that different cultures tend toward different illness narratives.
Many Caribbean immigrants attribute their MUS to chronic overwork and the irregularity of daily living, citing symptoms such as gas, dizziness, fatigue, joint pain and muscle tension.
Patients from Korea may explain their MUS as hwa byung, a syndrome of both somatic and depressive symptoms, often attributed to suppressed anger or rage.
Western cultures’ tendency to relate MUS symptoms to anxiety and mood disorders may be unhelpful. More emphasis on validating the narrative and less on psychological labels is more productive. One qualitative study of general practitioners’ explanations found patients were most satisfied if their doctors gave an explanation for symptoms that made sense, removed any blame from them (the patient), and generated ideas about how they could manage their symptoms.
What treatments can we offer these patients? Cognitive behavioural therapy (CBT) is by far the best treatment option. Randomised controlled trials involving five-20 CBT individual or group sessions provided by trained clinicians have shown at least a modest improvement in patients’ symptom severity.
One of the most helpful CBT interventions involves keeping daily diaries where patients list symptoms, with accompanying feelings and thoughts. In reviewing these thoughts with the patient (for example, “I am having a heart attack”), the doctor can offer alternative explanations (“I tense up and get chest wall muscle pain as result”) while continuing to respect the person’s narrative.
Listening and then listening again is the key to opening the door to MUS.