What Not to Say to Someone with Chronic Migraine: A Note on "Prevention"
I recently attended a coaching workshop for health and wellness coaches. The women I had the privilege to meet while there overflow with optimism and sincerity. They are helpers, encouragers, and supporters. As both a group and as individuals, they want nothing more than to nurture and champion the people they meet to lead healthy and full lives. I thoroughly appreciate this, and them, as I too want everyone I know and meet to live as joyfully and completely as possible.
Discouraged by misunderstanding
I found myself discouraged, then, in the support these women may be offering people — at least people with chronic diseases — when one of the leaders said something that’s on my list of number one things you don't say to someone with chronic migraine: "Migraines can be prevented, you know."
The word "prevent"
She went on talking when no one responded, undeterred in her support of clean eating and lifestyle change. And, while I fully understand the value of those changes — I wrote a book featuring many of them, after all — I took, and take, issue with the word “prevent.”
Adding to the stigma of migraine
Migraine stigma is a real thing. (Many of us here at Migraine.com have written about it at one time or another. For more, take a look at these great pieces by Kerrie, Katie, and Anna.) The term “prevention” used in the context this woman used it not only displays an ignorance of the genetic factors of the disease but also implies culpability on the part of the person living with migraine:
Not doing enough?
If we would just eat the “right way,” we wouldn’t get migraines. If we would just exercise “enough,” or avoid certain food or situations, or meditate more, or drink more water, we wouldn’t get migraines. If we just did something, we’d feel better.
Basically, she implied, whether she meant to or not, that if we had just cared enough about our health in the first place, we wouldn’t be suffering now. And, if we haven’t “fixed” our problem yet, then we must not care enough about it now either.
In this context, the disease is our fault. That’s what “prevention” means in the way this (well-meaning) woman used it. But that isn’t how migraine disease works.
Remembering the science
You don’t prevent migraine disease from existing any more than you prevent bipolar or Huntington's disease. At some point, there may be an intervention developed that could prevent the disease from presenting, but we certainly don’t have that now. What we can do, what we all try to do, is prevent the attacks. Even that, however, is not easily done.
Prevention for those of us with chronic migraine disease means doing everything we can to experience fewer, shorter, and less intense attacks. Prevention isn’t a complete cessation of symptoms. There is no cure.
Migraine can't be "prevented"
We didn’t create migraine disease by not eating the right foods or stressing too much, and we can’t fix the disease by eating better or stressing less. It isn’t a disease that can be “prevented.” If it were, the millions of us who live with it on a regular basis would have signed up for that treatment a long time ago. I expect someone working in the health field, especially in client and patient support, to know this. I'm hoping, as migraine education and awareness becomes more widespread, that soon they all will.
Have you taken our Migraine In America Survey yet?