Earlier this week, a new entry was posted on the blog of the Alliance for Headache Disorders Advocacay, Why the Disparity in Attention and Support for Migraine and Headache Disorders? Written by Bray Patrick-Lake, an AHDA board member and President and CEO of the PFO Research Foundation, this blog entry echoed some of what I've frequently thought.
Bray said, "As patients, we have not done a good job of imploring those around us to take up our cause, nor have we effectively taken up our own cause." Sadly, she's right. Bray and I are both Migraineurs ourselves. We've both had times in our lives when it was all we could do to get out of our beds because of frequent and severe Migraines. So, we fully understand that there are many Migraineurs who are physically unable to do many of the things she and are are now able to do to advocate for our cause.
I don't want to put words into Bray's mouth, but let me explain a bit why I get so frustrated with some of my fellow Migraineurs. The AHDA has been working hard for about five years now toward increased research funding and more awareness of Migraine as a disease and headache disorders in general. There are other organizations wroking on awareness issues too. There are times when the AHDA issues action alerts. An action alert is basically a call to action, times when we need people to write to their Senators and members of the House, asking them to support requests that AHDA advocates have made of them in person or other issues that have come up. We work hard to make it quick and easy for people to respond to these alerts. In 10 minutes or less, literally, you can follow the link we provide to send an email to your members of Congress. Parts of the email are prewritten so you don't have to worry about missing the vital information that needs to be sent, and there's a section where you can enter your own personal emssage as well. You don't need to know who represents you in the Senate or House or their email addresses. Wehn you enter your name and address on the form with the email message, the automated system finds the correct people and their email addresses for you.
When there's an action alert from the AHDA, between my personal address book and the email newsletters I send, I personally send links for the alert to more than 25,000 people. Would you care to guess what percentage of that 25,000 people take action, follow the link, and send an email? On a good day, it's three percent! I know who takes action because I get a copy of every email that's sent.
I wish I knew why people don't respond and take the 10 minutes to participate and advocate for themselves and others whose lives are so severely impacted by Migraine and other headache disorders. Do they think that one email won't make a difference? Do they think that there will be plenty of email sent without their participation? This is something I just don't understand. I have to admit that when I've sent an action alert and someone who didn't take action then emails me or posts to my forum asking for help, part of me wants to say, "But you need to help yourself too." The frustrated part of me SO wants to say that, but I can't. I can't do that to someone who needs help.
I think I can speak for Bray in this - We both hope that our speaking so honestly about this will make people think. We both hope that the next time people see opportunities to do something to make things better, they'll be proactive. Whether it's responding to an action alert or taking a couple of minutes to educate someone who thinks that a Migraine is "just a headache," we can all play a role. In fact, if support is going to increase... if the stigma is going to decrease... if our lives are going to get significatnly better, it's going to take all of us participating and advocating for ourselves and others.
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© Teri Robert, 2011
Last updated June 17, 2011