The other day on Twitter-X, I saw a post that essentially read “I’m 50 years old and I’ll go to my grave using two spaces after a full-stop.” The replies varied from “preach brother” and “I’ll die on that hill with you”, through to “do what you want – editors will just remove the second space anyway.” Turns out the double space (which I always use) was from our antiquated typewriter days, whereas modern computer fonts automatically space text in a way that acknowledges a full-stop / period. In other words, the second space is redundant on computers (but will remain forever in my right thumb’s muscle memory).
In a similar way, I recently read that a lot of the terminology surrounding migraines has changed. According to the file dates, the changes happened a few years ago, so I’m super slow on the pickup up – oops!
Apparently, you’re not supposed to use the term ‘migraine sufferer’. Instead, you’re meant to say, ‘person with migraine’. I assume the good intentions are to reduce stigma and stop migraineurs from becoming trapped in negativity. But I suffer, and I know that others do too. Granted, the suffering shouldn’t necessarily be the focus of the situation, but it feels inconsiderate not to acknowledge that it remains an essential aspect of a migraineur’s life.
The term ‘migraineur’ (which I just used) has been replaced with ‘person living with migraine disease’. I’m not sure why this change disappoints me so much. Maybe on some level the French term felt fancier. A small, oh-la-la break in an otherwise pretty bleak prognosis. Maybe (just between you and me) it’s because I often pretend the heat-pack on my head is a jaunty little lopsided beret and I’m on a soirée in some alternate universe.
Also, you no longer have a ‘migraine’ but a ‘migraine attack’. This alteration makes sense to me in my current situation. I have had a migraine behind one eye, constantly, for nearly two years. I don’t, however, always have nausea, neck cramps, or the really bad stroke-like symptoms I used to suffer from. As annoying as the pain in my face is, because it’s not extreme, or an all-body trauma, it does feel a bit misleading to refer to it as a migraine. When the more full-on symptoms happen, however, I definitely think of it as an ‘attack’ on my body, mind and spirit.
‘Barometric migraines’ have now lost their special trigger warning and are included in ‘migraine attacks,’ which is a shame. I quite liked the specificity of it. If you know what triggers your migraine you should be able to say so. Like ‘hormonal migraine’ or ‘I forgot to eat lunch migraine’. I understand, however, that triggers are rarely that simplistic, and labelling your headache ‘barometric pressure migraine combined with too much coffee and not enough sleep migraine’ takes up too much time and space.
‘Rebound headaches’ now tend to now be referred to as ‘medication adaptation headaches.’ The new term is technically more explicit, I get that, but the old term was weirdly more relatable.
Perhaps the most disappointing change I noticed, relates to the concern that the term ‘cured of migraine’ is “misleading and provides people with false hope”. Instead of using the phrase ‘cured of migraine’ we’re supposed to refer to a ‘migraine remission.’ If that isn’t the ultimate fun-sucker of a label, I don’t know what is. In this instance, I fully intend to be modernity-challenged and keep living life as if an end to my migraines is possible and a cure is just around the corner.
In the end, old habits are hard to break. Apologies in advance for my double spaces and insufferable suffering. That said, if there’s one habit I’m doing my darndest to help all of us break, it’s the suffering-cycle. So maybe judge me on my best intentions not my adherence to the rules…?
Thanks!
Take care and be aware, Linda.
PS: if you want to read more about the terminology changes, here are the links:
Short version: Lang_Image_Guide_Handout_web.pdf (headachemigraine.org)
Long version: CHAMP_Language_Guide_2019_website.pdf (headachemigraine.org)
There’s also a more generic A to V list of terms here: https://migraine.com/glossary-of-migraine-terms
The Mindful Migraine 
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