Although medical topics are more openly discussed nowadays, some diagnoses seem more socially acceptable than others. People are quite happy to talk loudly in cafes about their heart attacks and hip replacements, but not about conditions likely to evoke fear, disgust, disapproval – or disbelief, in cases of “invisible” illnesses that are not clearly defined or understood.

When I have been injured in falls caused by my own recklessness while playing with exuberant dogs or running on slippery rocks, other people have always been helpful and sympathetic. Such a contrast to the negative reactions I have sometimes received in relation to migraine, and I know that my experience is not unique. People who have never had an attack themselves may assume migraine to be “just a headache”, or “all in the mind”, a trivial indisposition being exaggerated to gain sympathy or avoid unwanted obligations, and brought on through the sufferer’s own fault. 

Research over recent years has identified some of the genes which predispose to migraine, and some of the physiological changes that take place during attacks, and migraine is now classed as a neurological disease. But its validity is not always recognised because it is a complex condition that can present in a wide variety of ways and follow a variable course, and there is no diagnostic test. Other conditions which have a consistent symptom pattern accompanied by specific abnormalities of biochemistry, pathology or Xray, are more likely to be taken seriously. 

Someone in the throes of a severe attack, prostrated by pain and vomiting, is clearly very unwell. But in between attacks they may look and feel quite healthy, so that observers cannot believe there is anything wrong with them, and do not understand why they may be trying to control their condition by lifestyle measures. For example, while it would be accepted that someone with diabetes needs to follow certain rules about diet, a migraineur wanting to avoid “trigger foods” when out for a meal risks being considered rude and fussy. 

Some of the stigma around migraine may be blamed on lingering sexist attitudes within the medical profession. Historically, certain doctors labelled their female migraine patients as neurotic, hypochondriacal and frigid, while describing their male ones as responsible, ambitious high achievers. Psychoanalysts have claimed, usually without any evidence, that the attacks represent sexual conflicts or the outburst of suppressed emotions such as anger or disgust. Such theories are less fashionable now that the biological basis of migraine is established, but have not entirely disappeared. 

Lastly, though I am reluctant to admit it, I believe that migraineurs themselves can play a part in perpetuating stigma. My husband has told me that my personality appears to change during attacks, and not in a good way. If this is true for me and others, maybe we unknowingly give off “vibes” that confuse and alienate people. A projection of the guilt or shame we ourselves may be feeling at these times? If we were better able to retain our self-respect, and not try to hide the attacks nor apologise for them, we might get fewer hurtful responses. 

Migraine and Me: A Doctor’s Experience of Understanding and Coping with Migraine by Jennifer Barraclough is available in e-book or print versions from Amazon and other online retailers.