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Perspectives

The art of medicine


First, do no harm
I have a vivid recollection of the rst patient with a convulsive
seizure that I ever saw. She was a young woman, unconscious,
her arms and legs apping wildly. The episode sticks in my
mind for the pandemonium it caused and for how out of
my depth this patient made me feel. I was the most junior
member of a team of doctors and nurses on a general
medical ward ghting to bring the situation under control.
The possibility that this seizure was not epileptic, that it had
a psychological rather than an organic cause, was strongly
considered, thought likely by some of my colleagues. We knew
that the variable intensity of the shaking and lack of limb
rigidity was unusual for epilepsy. However, the medical team
ignored that clinical suspicion, thinking it the lesser of two
evils. Instead, we gave her drugs for epilepsy. Then, when they
didnt work, we gave them again. Nothing we did helped and
half an hour later there was a collective sigh of relief when the
intensive care team came to take the patient away. I never got
to know that woman properly, but I never forgot her either.
It took many years of training for me to know with
certainty that the seizure I saw that day was undoubtedly
a pseudoseizure, as we referred to them then. A
hysterical seizure, an illness of the imagination born out
of psychological distress. It took longer still for me to
appreciate the danger that patient had faced. Not danger
imposed by her seizure, but by the doctors and nurses in our
ill-judged, but well meaning, attempt to help her.
More than 20 years on, I am now trained as a neurologist
and neurophysiologist and I specialise in the diagnosis of
seizures. Running a diagnostic video telemetry unit I am faced
with pseudoseizures every week, although now we refer to
them as dissociative seizures or psychogenic non-epileptic
attacks. In my rst year as a consultant about 70% of patients
referred for investigation of poorly controlled epilepsy
proved not to have epilepsy after alltheir seizures were
dissociative. That gure hasnt changed much over the years
and I nd myself constantly struck by how little has improved
for people with this condition. We can still only speculate
as to the mechanism. Health professionals continue to
underestimate how serious a problem it is. Our attempts to
help people with dissociative seizures are often fruitless and
treatment facilities hard to track down. The stigma attached
to the diagnosis remains resolute. In fact, on consideration, it
is only the name that has changed.
Dissociative seizures are one of the manifestations of
psychosomatic disorders, in which a person suers from
signicant physical symptomscausing real distress and
disabilityout of proportion to anything that can be
explained by medical tests or physical examination. In
the world of neurology such disorders can manifest in a
variety of waysmuscle spasm, blindness, loss of memory.
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Or symptoms may be something less dramatic, a headache


that will not go away, or bouts of dizziness. At least 20%
of patients in a typical neurology clinic have medically
unexplained symptoms that are suspected to have a
psychological or behavioural cause. And yet when I reect on
my training both as a medical student and as a junior doctor
I dont remember receiving any comprehensive advice as to
how I should care for patients with psychosomatic disorders.
Medical and surgical specialists are taught to rule out
disease. But ruling out disease is not the same as ruling out
illness and disability. Telling patients that they do not have
an underlying organic cause for their symptoms does not
always give them the relief that doctors expect. Psychiatrists
and psychologists are those best placed to help people with
psychosomatic disorders, but where the manifestation of
psychological distress is purely physical many suerers are
simply not making it to the people who can help them.
Bedbound with headache or struck down with convulsions
whose rst thought would be to go and see a psychiatrist?
Of course this is not just a neurological problem. Every
sort of clinic sees these patients represented. About 30%
of people in an average rheumatology clinic have pain
for which no specic cause can be found. Some 20% of
people in the UK have irritable bowel syndrome. This is
one of the most common reasons for people to present
to a gastroenterology clinic. It is also a condition that is
aected by psychological distress and where no organic
bowel disease is evident. And yet, to convince patients that
psychosomatic disorders are an everyday problem that could
aect any sort of person is very dicult. To tell somebody
that their medical complaint might have an emotional
cause is often met with anger. It is hard to believe that we
can lose control of our bodies so completely and without our
knowledge. And if our subconscious has chosen to mask our
psychological distress and express it in a way more palatable
to us then it follows that to remove the mask will be painful.
A psychosomatic diagnosis can be regarded by the patient
as a dismissal. Sometimes doctors are complicit in this.
Sometimes doctors are the problem. I met Fiona in the
video telemetry unit that I run. She had been diagnosed with
epilepsy 10 years earlier. She had taken seven dierent epilepsy
medications; although some of them alleviated her seizures
for a while, the improvement was never sustained. During a
period of observation in the video telemetry unit, Fiona had
20 seizures all of which looked slightly dierent. Despite loss
of consciousness each seizure was accompanied by a normal
waking EEG/brain wave pattern, indicating that they were
unequivocally non-epileptic. The question arosedid Fiona
have epilepsy 10 years previously which had improved with
treatment and was later replaced by dissociative seizures? Or
www.thelancet.com Vol 385 June 6, 2015

were the seizures dissociative from the very beginning? I went


back in time to nd the answer, got hold of every letter and
record available since Fionas rst presentation to the casualty
department after a collapse. A neurologist had witnessed
several of her initial seizures. In a note pertaining to them
he had written, having seen this ladys convulsions I think
it is almost certain that they are pseudoseizures. However,
I recommend starting her on antiepilepsy drugs pending
further investigation, just in case I am wrong in this. The
inaccurate subsequent transcribing of letters, the failure to
read the records thoroughly, meant that initial account of the
seizures was lost. By the time Fiona was investigated further
the presumed diagnosis of epilepsy, as evidenced by her taking
of epilepsy medication, had become etched in stone.
I have encountered this just-in-case attitude often and it
seems to arise from doctors assumption that psychosomatic
disorders are less serious than organic disease. Fionas
doctor felt that to miss a diagnosis of epilepsy was an error
he did not want to make, whereas to ignore a suspicion of
psychological distress was acceptable. How would he feel
if he saw Fiona now? She has taken multiple toxic drugs
that she didnt need. Her condition has deteriorated. Of
course it hasby treating her for epilepsy he deprived her of
appropriate treatment. Dissociative seizures rarely get better
if they have been established for as long as 10 years.
Somehow it has come about that we live in a world where
both the general public and health professionals consider
disability that occurs for psychological reasons as less
deserving of our attention than other forms of disability. A
person paralysed due to spinal injury is regarded as more
in need of our attention than someone with psychogenic
paralysis. Is that fair? Certainly a patient with psychogenic
paralysis is more fortunate because he or she, with the
correct help, can get better. But until they receive that help
both patients are paralysed and both are equally in need of
our expertise, research, and resources.
What is fundamental in feeling the same compassion for
each of these paralysis suerers is that physicians believe
that the disability seen in psychosomatic disorders is real
and beyond the patients control. I saw Matthew for the
investigation of paralysis of his legs. He was unable to walk
but all his tests were normal. He presented to doctor after
doctor for further opinions and tests. He did so because he
could not believe that there was no underlying organic cause
for his problem. He was on a search for something that he
believed to be there. That is not the behaviour of somebody
with insight into their own condition. It speaks to the depth
of the subconscious nature of these conditions and the
suerers desperation for help. Patients present for repeated
medical attention because their physical suering is real.
In the British Medical Journal in 1965 Eliot Slater, a
prominent psychiatrist, reported that 25% of patients given
a psychosomatic diagnosis ultimately proved to have an
organic disorder on 10-year follow up. He went on to say,
www.thelancet.com Vol 385 June 6, 2015

Private Collection/De Agostini Picture Library/Bridgeman Images

Perspectives

Une Leon Clinique la Salptrire (1887) by Pierre Andr Brouillet

the diagnosis of hysteria is a disguise for ignorance and a


fertile source of clinical error. It is in fact not only a delusion
but a snare. Even without having read this paper many
doctors still feel this way. They fear the future will prove them
wrong and when it does the nger of blame will be pointed
at them. This fear encourages doctors to avoid the diagnosis.
In the 50 years since Slaters paper there have been many
similar studies. None have agreed with his ndings. Equally
eminent doctors have shown that in a modern era when we
have access to advanced medical technology and where the
diagnosis of a psychosomatic disorder has been made in a
sound manner, the likelihood of an organic diagnosis coming
to light at a later date is only about 4%.
Both doctors and patients shy away from the suggestion
of a psychological cause for physical symptoms. Physicians
fear angering their patients, worry about being wrong,
avoid the diagnosis even when they suspect it. Patients
are understandably troubled by the stigma attached to a
psychosomatic disorder. Both groups struggle to understand
how the body can produce such dramatic displays with
nothing but emotional upset to trigger them. In answer I
say, when I am upset tears are released from my eyes. When
I laugh my diaphragm contracts, my face contorts, air rushes
from my lungs. Each of these things can happen in a moment
with only the slightest of provocations. And if tears and
laughter can leave my control so easily how can I doubt the
uncontrollable nature of what my patients describe to me?

Suzanne OSullivan
National Hospital for Neurology and Neurosurgery, London
WC1N 3BG, UK
drsosullivan@aol.com
Suzanne OSullivan is the author of Its All in Your HeadTrue Stories of Imaginary
Illness (Chatto & Windus, 2015).

Further reading
OSullivan S. Its all in your
headtrue stories of imaginary
illness. London: Chatto &
Windus, 2015

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