What Does It Mean To Be An Advocate?
Recently an online friend sent me a message asking for my advice about how to become an advocate for migraine disease. My answer to her: Sweetheart, you already are one.
I went on to explain. Her posts are very honest and forthcoming about her pain and migraine issues; problems with doctors; difficulties with family and friends who don't understand. She's involved in support groups, sharing kind words with those who need to hear them.
Raising awareness on social media
In many ways, that is all that is needed to be an advocate. Our disease is stigmatized, so just being honest on social media or even with friends in person can make a real difference. “No, I'm not fine, actually. I just started experiencing aura which means a migraine attack is coming.” Even that sentence (granted, saying it after years of "oh, I'm just tired" is a challenge) teaches the listener something, and it is up to them how to respond. One would hope the person would extend support or understanding, but if not, you've told the truth. Your truth.
Blog about migraine and use reputable sources
Of course, there are different levels of advocating. The next step, I told her, is to maybe begin a blog about her experiences. Not that it would have to be all about migraine, but at least partly, and share those posts on social media. Maybe start a Facebook page for your blog or online advocate persona. Mine is LadyMigraine365, combining my blog title with the book John and I created, Migraine 365. You can also use Twitter and Instagram, Tumblr or Pinterest. When posting items on a site like Pinterest however, make sure what you're sharing is accurate. Fight fire with fire by trying to share one accurate infographic from a reputable site like migraine.com for every "New Turmeric Supplement Cures Migraines!!" meme you see.
Advocacy events and conferences
For most, this is more than enough, especially since the whole point is that we're dealing with chronic illness. However, there are ways to go even further with your advocacy. There are annual events, such as Headache On The Hill, sponsored by the Alliance for Headache Disorders Advocacy, where doctors, advocates, and other concerned professionals travel to Washington DC and speak to lawmakers about devoting more time and funds to migraine research. As for me, that event scares the pants off of me. I intend to go... someday (maybe when I'm not quite as chronic - but I have nothing but admiration for those who do go)! The National Headache Foundation allows you to enroll as an advocate directly on their website. The American Migraine Foundation lists many ways to be involved, and also holds conferences and events across the country for patients, advocates, and doctors.
Another avenue is the U.S. Pain Foundation, which also allows you to sign up on their website to become an official advocate. If you choose chronic pain as your focus, there is much to do right now with the current opioid crisis and helping fight to make sure those who need pain medicine can still get it. Or, after you get used to blogging, you could try submitting a piece to The Mighty,a mental health and chronic illness site full of patient stories. There are also Miles for Migraine races around the country, and if running can trigger an attack for you as it does for me, you can sponsor someone, raise awareness, or walk.
Different levels of advocacy
Before I ever dreamed of writing for migraine.com or even blogging, I engaged in my own form of stealth advocacy. Having just been released from the hospital where I had to be detoxed from Excedrin, I printed small, shelf-sized labels saying "Warning: taking this medication more than 2-3 days per week will cause a dangerous 'rebound headache' cycle." I drove to every drug and grocery store in my hometown and affixed the labels to the metal shelves under the boxes of Excedrin Migraine, feeling enraged that an over the counter medication being marketed to us was actually hurting us. This was in 2003, and most of the labels were gone by the next day, but it was still a satisfying gesture, and I was very happy to read recently that the FDA is now requiring OTC analgesics to have printed warnings on their labels very similar to my homemade ones.
The point is, there are many ways to be an advocate. The most important thing is to be comfortable with what you're doing, and to not over extend yourself. Start slowly, and remember, all you have to do to start is to say, “Actually I'm having a migraine attack right now,” instead of “I'm fine.”
How much has your migraine disease changed or evolved over time?