Put up or shut up

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The past few weeks have been challenging. I’ve had something on my mind, but every time I started to write it came out as an angry rant. That’s not the message I wanted to deliver, so I waited. Now I am finally in a good place to share from my heart, not my moody impulses.

When the ALS “ice bucket” challenge first appeared, it triggered a lot of mixed emotions – amusement, envy, resentment. It was funny to watch videos of my friends getting doused with ice cold water, even if I couldn’t join in. It’s a really creative way to raise awareness, so kudos to whomever started it. I couldn’t help feeling sad and envious though. I thought, “Nobody ever does anything like that for migraines.  After all, it’s ‘just a headache’, right?”

Then one afternoon, somebody finally did something about it. Dr. Dave Watson enlisted the help of colleagues (including an ALS doctor) to issue a challenge to raise awareness for migraine and other headache disorders, Hot Wings for Headache. I could barely contain my excitement and couldn’t resist the urge to help spread the word. So I did what any self-respecting blogger would do. I wrote a feature and submitted it. The post was published a few days later and I eagerly anticipated the rapid spread of challenges.

The article did get a lot of page views, likes, and shares. It also triggered a lot of negative comments. I was stunned. How in the world could the migraine community be so fickle as to nit-pick the one organized attempt to raise awareness? I resisted the urge to jump into the controversy. It upset me so much that I avoided looking at the comments. Later that night, I told my husband what happened and got his opinion. I wanted to make sure that I wasn’t being overly-sensitive or misinterpreting the feedback. He agreed that readers seemed to be complaining a lot about something that was meant to help them.

Seriously people? How many ALS patients do you think actually participated in their own challenge? Do you really think that someone with advanced ALS could possibly tolerate a bucket of ice poured over them?  C’mon migraineurs, use your brains! The point of the challenge is for healthy people to raise awareness for those of us too sick to do it ourselves. Do you know how many variations of the ALS challenge I watched? There were big buckets, little buckets, lots of ice, no ice at all, and even a truck bed full of ice water. People used their imagination.

Are migraineurs so void of creativity that we can’t think outside the box instead of complaining about how it won’t work? I refuse to believe that. There’s only one conclusion I can come to that makes any sense at all: the negative comments came from a minority of readers and do not represent the large majority of migraineurs. After all, the article generated a lot of traffic.

Now it’s time to put up or shut up.

The point of the challenge isn’t the hot wings. The point of the challenge is to raise awareness for migraines and all the other 200+ headache disorders that disable millions. We want people to realize that headache disorders are not the same thing as having an occasional headache that responds to Tylenol. Millions are disabled by headache disorders. They steal hours, days, weeks, months, even years from the lives of hard-working good people who did nothing to deserve them. Migraine alone costs the U.S. economy billions in lost productivity every year. Patients are not lazy, faking it, or unable to handle stress.

So to all of you who really want to make a difference, I issue this challenge:

I challenge you to find a way to complete the Hot Wings for Headache Challenge. Make a video and pass the challenge on to at least one other person. Buy some tofu wings, make your own, eat milder ones, make a protest video, explain why your health keeps you from doing the challenge, I don’t care. There are no rules. Just get it done. The point of the challenge is not how you meet the challenge. It’s about raising awareness. Just make sure your video shares the truth about migraine and headache disorders.

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