This issue was brought to my attention. I am going to explain it and then explain a bit of an issue I have with it.
It is important for awareness we use the proper language when referring to migraine disease. Referring to it as a disease and not a headache is one example. Referring to it as an attack is one way to explain it instead of a headache because, as we all know, it is well beyond the headache stage of the attack (if it even has the headache stage in the attack).
What is wrong with MIGRAINES? Like ‘I have MIGRAINES’. The idea behind this is you wouldn’t say you have Fibromyalgias or epilepsies. You have migraine disease itself and then have individual migraine attacks. So it is ‘I have migraine disease.’ And ‘I am having a migraine’ or ‘I am having a migraine attack’. It is, frankly, a minute difference, but the difference is there. In the sense that we have a disease all the time and it reflects in attacks some of the time, but research demonstrates the migraine brain is different all the time with in-between migraine differences. My fibromyalgia syndrome is there all the time but flares up worse some of the time. In the same way, I say I have fibromyalgia syndrome. And I am having a fibromyalgia flare.
So I understand the point that the language does matter. And will continue to make sure I use it properly going forward.
I do have a bit of an issue with not using Migraineur. Which simply means a person with migraine. Some people suggest it isn’t a good term because it implies you define yourself by your illness when clearly you are so much more than your illness.
Okay, this is where I veer off. I know we shouldn’t define ourselves by our illness. Illnesses. The vast array of illness. We ARE vastly more than that. Or we want to be. Or we try to fit what capacity of a life we can in there with our illnesses.
But here is a fact of life, man, our illnesses profoundly impact our lives and therefore the people we have become. Our income stability, career, social lives, relationships and overall wellbeing and quality of life. Coping with that illness for the long term has in fact changed is in so many ways it is hard to even fathom who we would be otherwise.
To say that I am a migraineur or ‘a person with migraine’ is just to acknowledge the massive impact chronic migraine actually has on us. I don’t see that being a problem at all. I don’t identify with it as being my defining characteristic because, damn, I will have some semblance of a life with migraine disease come hell or high water. But it is, in fact, one of the Most Impactful things in my life that alters it and is something I consider before every single decision I make. I was just thinking about it because I have vertigo again tonight. And I was thinking about what if I have it tomorrow? What if it is severe and I can’t get to work? What if it is mild? Should I drive? What if it gets worse while at work? Impacts work? Makes it so I am unable to get home? I have to consider migraine every single day.
I do get the distinction though:
Person with migraine: I have migraine. It isn’t something that is part of my identity.
Migraineur: Something I own as part of my identity.
I get that the language matters there. I remember reading something about that when we say ‘my’. My fibromyalgia. My depression. And how we should say ‘I have’. It is something we have, not own as part of who we are.
Nevertheless, I have never been one to ignore the vast impact illness has had on me. On my life. On how I perceive reality. How I perceive pain. How I perceive others. How I cope. If these illnesses disappeared overnight I would still be the person moulded by them. They are life-altering. And nothing can change that. I can say ‘I am a person with migraine’ all I want but just remember, while we are not our illnesses we have been profoundly shaped by our illnesses.
It is like saying ‘I am not my scars’ but my scars hold within them the memories of what caused them and those memories have impacted who I am. Am I not my scars? Am I not, at least in part something that profoundly impacted every aspect of my life? A little. But I do not own them. They are not ‘who’ I am. They are an experience that changed me, yes, but not part of my identity. There is a pretty big distinction there.
Either way, I am on board with using these distinctions with language because I do believe it is important for the same message about illness to be used with spreading awareness. Therefore I will be careful to do so.