Open letter to those who don't have migraine
Migraine. I have come to loathe the word. Almost as much as I loathe what it does to me and as much as I loathe what having the condition has wrought on my life.
If you have migraine, you know what I mean. If you have not experienced migraine, you likely do not have a clear understanding of all it entails.
Here is the first thing to understand: Migraine does not equal headache.
Although crushing pain is the hallmark of my particular brand of migraine, it isn’t the only thing. Let me paint a window into my migrainous world:
A day or two before I get a full-on attack, the warning signals begin to appear:
• my vision gets blurry
• my ability to focus starts to falter
• any smell seems 10x stronger than it actually is
• waves of nausea hit randomly at any time of the day or night
Then the day before or just before the pain begins, the next batch of fun starts:
• any sound seems like it’s being blasted through an amplifier at AC/DC concert
• light feels like shards of glass penetrating my eyeballs
• my frontal lobe feels like it’s been replaced by thick mud
• my neck is so stiff it feels like it could break with the slightest touch
And then the full-on attack descends. By this time, I’ve already taken medication that is supposed to “abort” the migraine. But that rarely happens. I am, however, still fortunate enough that it lessens the impacts. What happens is still debilitating. Here is my attempt to describe the pain:
First, light the surface of your brain on fire. Then, surround your brain with barbed wire. Now, put your head into a large vise and have someone tighten it until it feels as though your head will crack. And then, just for good measure, have a friend drive a large curved spike through the top right side of your skull, and have them keep hammering until the spike emerges from your right eyeball.
Oh, yeah, it’s a rare kind of fun.
As I mentioned, I’m one of the more fortunate people whom the “abortive” medications help. So, eventually, the pain levels get turned down to more of a flicker of flame, less pointy barbed wire, less pressure and only insistent throbbing to remind me where that spike is located.
But that is just the pain component. I still have to try to manage the other aspects of migraine: my vision is blurry, my eyes are sensitive to light, my ears to sound, my nose to smells. My brain is such mush that it’s exhausting to focus on anything – conversations, reading, grocery-shopping, anything.
Knowing that I am the no-fun girl when I’m in the throes of migraine, I’ve bowed out of meeting up with friends and family. I’ve tried to explain why, but oftentimes, I get the sense that friends and family think I’m just making excuses. It couldn’t be that bad, could it? (Fellow migraine sufferers, you’d recognize the unspoken it’s-just-a-headache-take-some-ibuprofen-and-get-on-with-it approach.)
Over time, as the migraines have become more frequent and more debilitating, I hear less and less from my friends and family. My boyfriend also seems to have given up.
I ask myself why? I think that the people I know are fairly enlightened compassionate individuals. They took the Ice Bucket Challenge; they take part in the Ride to Conquer Cancer; they grow facial hair for Movember, they support causes such as Alzheimer’s research, diabetes awareness and Crohn’s disease. So, why do they seemingly check out when it comes to supporting a loved one who is flattened regularly by migraine?
My hope is that it is a lack of understanding.
I will do what I can to improve their lack of understanding. But I also know that there is much stigma when it comes to migraine. (Good article on this at HuffPo http://huff.to/lfvcST)
At the moment – day two of a migraine attack – it all seems rather daunting to deal with. But, one thing I have learned from migraine is the ability to soldier on, manage what I can and try to move forward, if only by inches.
Have you taken our Migraine In America Survey yet?