The Language of Migraine

Referring to a Person with Migraine

Over the past 25 years or so, I have never really been comfortable referring to a person with migraine as a ‘migraine sufferer’. I felt that this term had negative undertones, i.e. emphasising suffering.

A Person with Migraine

In recent times, I have used the term ‘migraineur’. As pointed out recently ‘A migraineur is a person for whom migraine is their entire being and is wrong, the same way “epileptic,” “schizophrenic,” or “retard” is wrong. A person with migraine is not necessarily defined by their disease.’¹ Agreed. In a recent publication¹, it was suggested that the term ‘person/s with migraine’, be used, although some consider this a little cumbersome.²

The author¹ also suggests avoiding the term ‘migraines’. This is a term I have refrained from using because it suggests a person experiences a relatively small number, whereas ‘migraine’ implies a condition or disease. Agreed, but here is where I disagree; migraine… a ‘disease’ or ‘condition’?

Identifying a term that simply describes this situation is not easy.^1,2

A Disease or Condition

In a previous Delphi Survey, 12 panelists were divided almost equally as to the preferred term to use when describing migraine; ‘disease’ or ‘condition’.²

In 2016, the American Headache Society’s decided to refer to migraine as a ‘disease’. This has promulgated increasing use in the professional literature and media.

My view is that the term ‘disease’ suffers the same fate as ‘migraine sufferer’ as it has negative undertones. What do you think of when you hear ‘disease’? I cringe every time I hear it. The most common diseases include….

• ischemic heart disease
• CVA/stroke
• chronic obstructive pulmonary disease
• respiratory cancers (trachea, larynx, bronchus, and lungs)
• Alzheimer’s disease or dementia and
• Cirrhosis.³

Exacerbating the Situation

The term ‘disease’ exacerbates the situation.

Some consider the difference between a ‘disease’ and ‘condition’ on the degree of impact on the quality of life,¹ when it has a real impact on someone’s life. When it progressively worsens it is considered a ‘disease’. If the impact is small, or when it is a risk factor for another thing, it is considered a ‘condition’.¹

OK, but impact on one’s life is relative.

Let’s consider the definition of ‘disease’…

… illness, sickness, ill health, infection, ailment, malady, disorder, complaint, affliction, condition, indisposition, infirmity, disability, defect, abnormality, pestilence, plague(!), cancer, canker, etc…

Now, the medical definition of ‘condition’…

… disorder, disease, illness, complaint, ailment, malady, disorder, complaint, affliction, indisposition, infirmity, disability, defect, abnormality etc…

Migraine is not a ‘disease’ – it is constellation of symptoms arising from a disorder, a sensitised brainstem, which is reversible (can we get away from the perception that migraine is a life sentence?).

Let’s consider the non-medial description of ‘condition’…

… circumstances, surroundings, environment, situation, state of affairs, context, background, climate, atmosphere, way of life, etc…

Describes Migraine in Relation to Recent Research

Which definition best describes migraine in relation to recent research?

Whilst this may seem a pedantic, how we talk about a migraine affects how the public speaks about migraine. It is time to consider the most beneficial way to communicate migraine and headache.

Wanting to adopt language that does not inflame the (migraine) situation, intuitively, and because I am not the one to judge the impact on another person’s life (and frankly questionnaires do not do justice this; do they reflect what you hear from your patients?), despite the American Headache Society’s decision I will describe migraine as a ‘condition’ rather than a ‘disease’.

References:

1. Young WB. De-Stigmatizing Migraine – With Words. Headache. Nov 15 2017.
2. Young WB, Kempner J, Loder EW, et al. Naming migraine and those who have it. Headache. Feb 2012;52(2):283-291.
3. https://www.healthline.com/health/top-10-deadliest-diseases# Overview 1