If you are like me, you sometimes feel like there are so many problems that need solving that it becomes paralyzing. I often find myself thinking, "Where do I start?" Which turns into "I don't know what to do," and from there, "I'll let someone else do it." But there ARE a lot of problems out there that need SOMEONE to address them. So what's the solution? I don't know exactly, but I know that doing nothing usually accomplishes nothing. So my answer - DO SOMETHING.
At this point, you may be thinking that this post got misplaced into this headache and migraine blog. So I'll back up. Many of you know already that I am a neurologist who specializes in headache medicine. I enjoy seeing patients, learning their stories, hearing their concerns, and working with them to find the best possible approach to dealing with their disease. But there are over 37 million American patients with migraine as well as the millions with cluster headache, trigeminal neuralgia, and one of the other over 200 headache disorders. There are only a few hundred of us who specialize in headaches and migraine. Even if that number tripled, we'd only be able to scratch the surface of the burden of headache disorders. A few years ago, I found myself frustrated by the limited impact of my career in my home state. In West Virginia, it is estimated that over 200,000 people suffer with migraine and 40,000-80,000 have chronic daily headache. That's when I received an email that changed the way I look at what my career actually is.
The American Academy of Neurology (AAN) has a program called the Palatucci Advocacy Leadership Forum (PALF) designed to train neurologists how to become advocates for their patients and for the profession. In 2010, I received an email from the president of the AAN telling me about PALF, that nobody from West Virginia had ever participated, and asking me to consider applying. Sounded interesting, but what really caught my eye was the all-expenses-paid three days in San Diego during the winter. I applied, got accepted, and while there I gained skills related to advocacy, such as media and government relations and how to "action plan" a project from idea to completion. More importantly, I was introduced to people who were completely dedicated to the idea of being advocates for others.
Here's what I learned:
There will be no better person to advocate for something than the person who actually cares about the issue.
Advocacy is the ability to magnify my impact beyond my ability to interact with patients one-on-one.
- If I don't DO SOMETHING, I can't expect anyone else to either.
For me, this has led to my involvement with Headache on the Hill, Neurology on the Hill, working with the American Headache and Migraine Association (AHMA), the wildly-fun-but-ill-fated Hot Wings for Headaches Challenge, and others. In particular, as a migraine sufferer and headache physician, I know that we need better understanding of these disorders in order to get better treatments. I also know that my expertise is not in research, and that the funding for headache and migraine research is dismal. That knowledge, combined with my new advocacy interests, lead to my biggest advocacy venture to date, the AHMA Runnin for Research run/walk event. I had no skill or experience in race organization nor any skill in running. But I recognized an opportunity to DO SOMETHING, and went for it. I won't bore you with all the details, but you can learn more about it on the 2014 Facebook page. I made mistakes, it wasn't always pretty, but in the end we raised $5,800 to donate to the American Migraine Foundation for research. And this year we are expanding to two locations and doing it again. In 2016, I hope to be able to facilitate others who want to DO SOMETHING in their towns by providing a race planning guidebook, logos, etc., in order to expand the event further.
My take home message is not that everyone needs to put on a 5K run or run in my event (although that would be awesome!). It's that we can use our own experiences, our own suffering, and our own frustrations as the fuel to find a way to DO SOMETHING to make a difference for everyone who lives with headache and migraine disease. Your ability to DO SOMETHING may depend on your current state of health, but even the sickest among us can take part in some ways. Here are some suggestions, but please don't limit yourself to these:
When Headache on the Hill is occurring on April 23rd, 2015, write an email to your US Congressman/woman and Senators. Tell them that headache and migraine advocates are coming with an important message. Tell them your story (succinctly - they really do work hard up there despite how it seems sometimes). Tell them that it matters to you and your family that they take the burden of headache and migraine seriously.
Join AHMA via the AHMA web site. This is the patient branch of the American Headache Society, and it offers education, support, awareness and advocacy efforts, and much more.
Ask your doctor if there is a support group in your area. If there is, go. If not, start one.
If you are able, come to the 2016 Headache on the Hill. It's a ton of fun with great people and has had a significant impact over the years.
Take the Hot Wings for Headache Challenge ;)
And really, we'd love to have you participate in person or virtually in the 2015 AHMA Runnin for Research events in Morgantown, West Virginia, or Louisville, Kentucky.
© David Watson, 2015