The theme of today’s Migraine and Headache Awareness Month Social Media Challenge is “Sandbox Diplomacy.” The challenge says:
Migraine and Headache Awareness Month is for everyone, with any headache disorder. Raising awareness about ALL headache disorders is the job of EVERYONE with ANY headache disorder. None of us are in this alone, yet competitiveness and in-fighting are common. Instead of arguing about the visibility of Migraine awareness, we need to work TOGETHER to raise awareness for EVERYONE.
Think of Migraine and Headache advocacy as one big playground. We all come with our own combination of headache disorders. Just because the “Migraine kids” outnumber everyone else, doesn’t mean we all don’t matter. Let’s try a little “sandbox diplomacy” for once. Bring your toys, share with everyone, be kind to everyone. Most of all, remember that this isn’t a competition. We’re all playing in the same sandbox, so we may as well play nicely.
EVERY headache disorder matters.
What is one way that you can support awareness for a headache disorder you do not have?
This is a topic that has been on my heart for some time.
As many of you know, I have been diagnosed with multiple headache disorders, including three types of Migraine. As such, I split my time between Migraine-specific advocacy and efforts to raise awareness about other headache disorders. In particular, I devote a great deal of time to Cluster Headache patient education, support, and advocacy.
You would think that everyone could support awareness for all headache disorders without feeling slighted or personally insulted when their own diagnosis isn’t always front and center. Unfortunately, this is not the case. All too often we behave like children fighting on a playground.
Here are just a few examples:
- Migraine folks don’t understand why I insist that they replace references to Migraine with “headache disorder” in order to better represent patients experiencing all headache disorders. They scream bloody murder that “Migraine isn’t just a headache” without realizing that they just marginalized every patient living with another debilitating headache disorder.
- Cluster headache folks are downright hostile whenever I dare to mention the word “Migraine” or share any information with the Cluster Headache community that comes from a “Migraine” source, even when that source is trying to create awareness for Cluster Headache.
- I have fellow advocate friends who don’t like each other or have problems with each other’s behavior. It hurts me to be caught between people I love. I don’t have to condone someone’s behavior or endorse their position in order to find ways to work with them for the good of patients. Instead of finding common ground, I find myself caught in the middle of personal conflicts not of my own making. Why can I just love you all?
Honest questions for everyone
- Why can’t we be transparent about our motives, intentions, and plans? Why do we say we’re hosting “awareness” events when it’s really a fundraiser or promotional event just for our own group? There’s nothing wrong with self-promotion or fundraising. Let’s just be honest. No one group has a monopoly on creating awareness or supporting patients, and none of us speak for everyone.
- Why must we all be so territorial and competitive? Is it so terrible that different groups exist to meet the needs of different people? Why do we care what one group does or doesn’t do, especially if we’re not active in that group? Why can we just be happy that people are trying to help? All of us help some people. None of us help everyone.
- Why do we insist on tearing each other down? How does it help patients if we waste our precious time and energy picking apart the motives and behaviors of other advocates?
- We’re all different, but not so different that we can’t find common ground. Why is it so hard to find?
It doesn’t have to be this way!
I once told a friend that I was “Switzerland” when it came to advocacy groups. I saw the merit in every group, even the ones that weren’t ideal for me and refused to take sides or tolerate criticism of any group or individual.
It took time, but I eventually realized that in order to make an impact, I had to take a stand. It was necessary to state my positions, my opinions, and even my clinical judgment.
That’s what leaders do.
So here I am, once again, stating my position clearly for all to read.
We don’t have to agree.
We don’t even have to like each other.
If we’re to make any progress, we do have to work together.
I have an offer for everyone, but not all of you will accept this offer. That saddens me because you are all important. Even knowing this, I’m still extending an invitation to put aside our differences, our old grudges, our egos, and join hands for the good of headache patients everywhere.
If that means I get struck by lightning, at least I’ll be standing tall. Some of us were born to be lightning rods.