Fighting for Migraine With Words
By Dr. William B. Young
The words and phrases we use subtly influence how we and others think about the world. This matters a lot for migraine. It is hard to change people’s preconceived, ignorant notions and arguments just don’t have much of an impact. I’ve been arguing for a long time, and I don’t think it has changed the general perception of this disease. But people copy what others say; if for no other reason than we are wired to do so. So why don’t we who understand this disease, either because we have it, or because we treat it, or because we study it, choose to talk about it in the most beneficial way we can?
Years ago I would have resented someone supporting politically correct speech. However, over time I have come to see how certain words and phrases undermine people with migraine, minimizing the impact of disease, and perpetuating the stigma of migraine.
What do people say that undermines migraine and those who have it, and what can we say that accurately portrays this condition in a non-stigmatizing way? What sets the stage for recognition of the impact of migraine, the value of effective treatment, the need for more research and better policies, and for maybe, just once in a while, a little compassion?
Years ago, Joanna Kempner and I, in collaboration with many others, wrote a paper entitled, Naming Migraine and Those Who Have It. Joanna wrote the award-winning book Not Tonight: Migraine and the Politics of Gender and Health crystalizing, for me, the need to take on a new approach. I slowly came to a number of conclusions regarding the language that describes migraine. Recently I have noticed, or have been pointed out, a few other things doctors say about migraine that are now really getting under my skin!
So let’s get to it!
- Migraine is a disease when it has a real impact on someone’s life, or when it progressively worsens. It is a condition only if the impact is small, or when it is a risk factor for another thing. Merriam-Webster defines disease in this way: a condition of the living animal or plant body or of one of its parts that impairs normal functioning and is typically manifested by distinguishing signs and symptoms. Clearly, migraine is a disease; so use that word!
- Migraine, not “migraines”. Saying “I have migraines,” implies you have a few of them. If you have migraine, you have a disease or condition that can strike at will, and whose potential is always there. Sorry— that’s the truth of the matter.
- Migraine, not “migraine headache”. Migraine is a heck of a lot more than a headache. If you want to emphasize the headache part of it, say “the headache of migraine”.
- Person with migraine, not “migraineur”. A migraineur is a person for whom migraine is their entire being and wrong the same way “epileptic,” “schizophrenic,” or “retard” is wrong. A person with migraine is not necessarily defined by their disease. Similarly, don’t say “migraine personality” or “migraine-type person;” that’s just wrong!
- Never call anyone else a migraine sufferer. If you want to emphasize the suffering of migraine in yourself, then do so. I don’t think I have the right to do that for anyone else.
- Rebound headache, or medication adaptation headache, not “medication overuse headache (MOH)”. Medication overuse headache is subtly blaming the person who has it, even when it is the doctor’s fault for prescribing daily abortives or not educating the patient. Now, there are several concerns, but to my mind they don’t override this argument. Firstly, MOH is the official name and the classification group has not been receptive to changing the name. Secondly, “rebound headache” is wrong about the mechanism and suggests that it is just an attack bouncing back, disregarding the most important thing: the brain has been damaged over time by medicine that helps in the short run. Most of the time people understand what you are talking about when you say rebound, so for now, I prefer it to MOH. There are things only doctors say that irritate me. Here are two such things:
- Unmet needs. Why don’t you just say “treatment stinks,” or “there aren’t enough headache doctors,” or whatever?! Not to mention, who gets to decide what people need? It implies whatever the speaker wants it to mean without having to examine the assumptions behind it.
- Barriers to care. To me this sounds like trying to make a problem sound less severe. How about, “reasons people with migraine can’t get good headache care”? I made a convenient table to summarize:
I believe that if we consistently use the right words and phrases then over time we can normalize the concept that migraine is serious, yet not self-defining. This will bring what we all want: more research, more treatments, less hostility, and less stigmatization.]]>
Erica Rigby’s advocacy story is written and told by Erica Rigby and edited by Miles for Migraine team. Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to…
How did you get involved with Miles for Migraine? My journey of becoming an advocate for Miles for Migraine started a little over a year ago, I wanted to be with people that understood my disease. I also wanted to be able to tell my story about the information that I have learned to help…