By Katherine Foxhall
All the fascinating discussions of emotion on REMEDIA – particularly Danielle Ofri’s recent reflection ‘On the Raw Fear of Being a Patient’ – made me think about the role of fear in the history of illness. It occurred to me that I’ve come across fear in a number of contexts while researching the history of migraine – fear as a cause, as a symptom and as a consequence of this condition.
In 1870, Hubert Airy wrote about seeing a person afflicted by attacks of ‘hemiopsy’ – zigzag patterns affecting eyesight, now commonly known as migraine aura – ‘turn away in horror from a drawing of the ugly sight, quite content to bear serious illness “if only the ‘half-blindness’ would keep away”.’[i]
In 1873, the Cambridge physician, Edward Liveing, published On Megrim, Sick Headache and Some Allied Disorders.[ii] Liveing’s book has become a foundational text in the history of migraine. From the realms of quack advertising and home remedies, migraine became, for the first time in the English-speaking language at least, a disease to be taken seriously by physicians. On Megrim is best known for its theory of ‘nerve-storms’, but it is also full of emotions. Liveing quotes the influential Swiss physician Samuel-Auguste Tissot, who identified emotional states as a cause of migraine seizures: ‘it does not seem in fact to matter much what the character of the emotion is, provided it be strongly felt’, he wrote.[iii] Like Tissot, Liveing noted that feelings of fright, anxiety, mental distress, anger and vexation often preceded many of his patients’ migraine attacks. Perhaps more surprisingly, he observed that strong emotions including anxiety, dread, depression, ill-humour or ‘reckless despondency’ could also be premonitory symptoms of megrim, warning that an attack was on its way. A patient, anonymized as A.M., described a ‘vague and unaccountable sense of fear’, while Mr B. talked of ‘an indescribable feeling of dread attending the headache as if something were about to happen’.
According to Liveing, emotional strain was an important cause of megrim. He identified men of intellect and business as particularly prone to the disorder, strained as they were by ambition, the pressure and responsibilities of business, and the competition and excitement of commercial speculations. Liveing also explained that megrim often arose from emotional strain in the sphere of domestic life, from ‘the anxious forecasting and much serving, which slowly undermine the nervous energies of many wives and mothers’.[iv] Yet, these ‘domestic’ migraines soon slipped from view. In the remaining decades of the nineteenth century, physicians on both sides of the Atlantic seem to have been more interested in discussing their own experiences of migraine (particularly those accompanied by ‘aura’) in medical journals, rather than those of their patients.
In the twentieth century, psychoanalytical ideas about the brain and illness mark a turn to medical holism and competing theories about allergy and hormones, which radically reconfigured understandings of migraine. Emotions continued to play a key role, but migraine then became a disorder explicitly associated with women. In 1947, for example, Walter Alvarez claimed that he could ‘diagnose migraine with a fair degree of certainty just because the patient is a typically migrainous person who gets her queer spells in a typically migrainous way after becoming tired or tense or upset’. Personality became a predictor. Although psychoanalysis itself now has fallen out of favour in mainstream Western medicine, the assumptions which fuelled the image of the ‘migrainous woman’ continue in earnest today. Medical texts about migraine still emphasise female hormones and the cycles of menstruation as critical factors, and pharmaceutical campaigns overwhelmingly target women, as sociologist Joanna Kempner has shown.[v]
Migraine is an extremely common disorder. Epidemiologists currently estimate that around 15-18% of women, and 6% of men experience migraine in any one year. Migraine is included by the WHO in its Top 20 causes of years lived with disability. In the introduction to her memoir of ‘an unrelenting headache’, Paula Kamen describes how ‘experiencing chronic pain… can be a complicated, isolating, self-blaming, guilt-ridden process’.[vi] Kamen emphasises the burden of chronic pain as a ‘women’s issue’, but it is also true that migraine is under-diagnosed and under-treated among men because it is seen as a women’s disorder. In a recent online post, migraine sufferer Ian Sager described ‘fighting on two fronts’ against the agony itself, as well as those who cannot fathom a man not pushing through the pain of an illness that predominantly afflicts women.’
Guilt. Isolation. Disbelief. Let us come back to fear, now in the twenty-first century. Recently, I’ve been researching the history of visual representations of migraine, and I have been especially struck by Youtube videos such as Jandr1ch’s ‘Visual Migraine Animation’. [Please note: those who might be susceptible to the video’s visual effects, particularly black and white flashing elements, should be wary of watching it]. The video, uploaded in 2011, reproduces the effect of a visual migraine, or migraine aura: against a fixed background image of a road as seen through a car windscreen, a point of light develops into a digital representation of an aura with pulses, flashes of light, and an expanding brightly coloured zigzag. The effect is distinctly uncomfortable to watch, even for someone who has never experienced a migraine with aura.
Viewers’ comments added to jandr1ch’s video are as interesting as the animation itself. These responses often express a range of emotions, as they are written by people who suffer from migraine: firstly, gratitude, as the animation finally provides a way for them to try to explain to friends and family what it is they see during an attack; astonishment, at finding something like their own experience represented online; and the fear accompanied by panic in recollection of an experience that was provoked by their first migraine aura attack. One woman describes how she pulled her car over at night on a long dark country road, ‘scared to death and crying’. The commenters also share sympathy and concern for each others’ pain, and respond to dismissive or derogatory posts with anger: ‘ it’s NOT dumb shit. It’s real, it happens, and it’s scary as fuck if you don’t know what it is’.
What I found most striking about these comments is how many of them are written by men. While ambiguous usernames make an accurate statistical analysis of gender almost impossible (and men are more likely, due to stigma, to disguise their gender perhaps), of the 179 comments below jandr1ch’s video for which the gender of their authors were identifiable, 105 were made by men. This is a marked contrast to other online migraine forums: migraine blogs and contributions to the Migraine Trust’s Travelling Diary, for example, are overwhelmingly written by women, and have provided an important arena in which to speak openly about experiences of dealing with chronic illness, often in the face of disbelief, apathy, and misunderstanding from employers, loved ones and the medical profession.
Youtube seems to be providing a new forum for men (as well as women) to open up about their feelings of fear, pain and isolation in relation to migraine. And yet, we must remain aware that the internet itself is not an entirely democratic space. Important questions remain, particularly about gender, that are as relevant to the internet as they are to the historical sources that form the basis of my wider project: who is empowered to speak about illness in any given context? Whose knowledge gets taken seriously? Are other experiences (and fears) silenced, when one group finds their voice?
Katherine Foxhall is a History Lecturer at the University of Leicester. She has published widely on the history of health and medicine. Her most recent article, ‘Making Modern Migraine Medieval: Men of Science, Hildegard of Bingen and the Life of a Retrospective Diagnosis’, is in Medical History (July 2014). She is currently working on a book-length history of migraine, funded by the Wellcome Trust, which examines how people have understood, talked about and managed this disorder from the fifteenth century.
 Liveing, p. 114.
[i] Hubert Airy, ‘On a Distinct Form of Transient Hemiopsia’, Philosophical Transactions of the Royal Society of London 160 (1870), pp.247-264, p. 247.
[ii] Edward Liveing, On Megrim, Sick-Headache and Some Allied Disorders (J. & A. Churchill: London, 1873).
[iii] Liveing, On Megrim, p.49.
[iv] Liveing, On Megrim, p.431.
[v] Joanna Kempner, ‘Gendering the Migraine Market: do representations of illness matter?’, Social Science & Medicine 63 (2006), pp. 1986-1997.
[vi] Paula Kamen, All in My Head (Da Capo Press: Cambridge MA, 2005), p. xiii.