The headache disease community needs your help! To gather information to help improve patient access to treatments, advance research, and decrease stigma of headache diseases, the Coalition for Headache and Migraine Patients (CHAMP) is conducting a survey. I’m a CHAMP member and can tell you that the coalition is doing great work for people with headache diseases. We can be even more effective if we hear from more patients about their experiences.
In order to do this important work, we need to hear from more voices. This is where we’re asking for your help. You can:
Take the anonymous survey! If you live with headache, migraine or cluster disease, we want to hear your experience. The deadline is Sunday, Feb. 29.
Share this with anyone you know who lives with a headache disease
The survey is hugely important and takes about 15 minutes to complete thoughtfully. I promise your time will be well spent. At the end of the survey, you have the option to enter to win a $25 Amazon gift card.
On Tuesday, I attended my first Headache on the Hill advocacy event in Washington, DC. It was an inspiring, educational experience where I learned a bit more about how our country works. I was one of 174 advocates who sought to get co-sponsors for a bill that would increase the number of residencies for people who treat addiction and pain disorder. We also asked for an amendment to the existing bill to increase fellowship funding so more people can train as headache specialists. We represented 45 different states and visited 255 offices of Congress members.
What is Headache on the Hill?
Headache on the Hill is an annual event where people who are affected by headache disorders visit the offices of their state senators and representatives with a specific “ask” to improve the lives of people with headache disorders. The ask is different each year and it’s tailored to specific activities in Congress or needs in the headache community.
The first Headache on the Hill, in 2007, was entirely healthcare providers. This year, about 70% of the participants were people who live with headache disorders or our loved ones who wanted to advocate for us. All six of us on TeamArizona have migraine and two are also healthcare providers, which was a great mix.
What We Asked For
The Opioid Workforce Act is a bill currently in both the House in the Senate that seeks to increase funding for more training programs in addiction medicine, addiction psychiatry, and pain medicine. We asked for co-sponsors for the bill and also asked for an amendment to the bill to include fellowships. The bill is currently written only for residencies, but pain medicine (and headache medicine) are fellowships, not residencies. We also asked that they specifically include headache medicine residencies in the bill, since they have different training programs than pain specialists do.
How You Can Help
Even if you didn’t attend Headache on the Hill, you can help by reaching out to your senators and representatives about the Opioid Workforce Act (which is H.R.3414 in the House and S.2892 in the Senate). First, check to see if they have already co-sponsored the bill (check here for representatives co-sponsoring H.R.3414 and here for senators co-sponsoring S.2892). If they have co-sponsored, please thank them for doing so and tell them how important it is to you. If not, please ask them to co-sponsor the bill. You can also ask them to amend the error in the language to include pain medicine and headache medicine fellowships (rather than residencies), but you can skip that part if it feels too hard to explain (I got training on it and it was still hard to explain!).
You can find your representatives and senators here. Calling is probably the easiest approach, but research shows that a personalized postal letter or personalized email are more effective than a phone call. Given that “personalized” is a key component of the effectiveness of the letter or email, I don’t have prewritten wording for you. My recommendation is to start with the “ask” and then tell them why it’s important to you. Be sure to include your address in the letter so they know you’re a constituent.
If you call, know that you’ll likely reach voicemail, so if you have anxiety about talking to a stranger on the phone, know that you probably won’t! Be sure to leave your zip code so they know you’re a constituent. I always add my full address at the very end of the voicemail, just in case.
Join Me Next Year!
Join me in 2021 to advocate for headache disorders in your state! Follow the Alliance for Headache Disorders advocacy on Facebook or Twitter to learn when the applications for next year open, which is usually in November. There is an application form to fill out and not everyone is accepted—it’s based on which states and areas within each state need representation—but please don’t be intimidated by the application form. You don’t need to have a social media presence or a history of advocacy to be able to participate, but it’s good information for them to have, so they ask for it.
A caveat: Headache on the Hill is the largest patient advocacy group without a corporate sponsor that does lobbying events like this. That means both that there’s no corporate intervention in the message (which is great!) and that it’s done on a shoestring (which can be a challenge for some patients who want to participate). Participants’ hotel rooms are covered for at least one night and usually a couple meals are covered, too. You’ll need to cover transportation to and from Washington, D.C., some of your meals (I brought a lot of nonperishable food and found a grocery store nearby), and for extra nights at the hotel. It’s a commitment, but it’s an incredible experience if you can do it. I honestly can’t count how many people have told me that attend Headache on the Hill was life-changing for them.
This photo is not a glamorous temporary facelift intended to show off my manicure, despite what Elle magazine might claim. Nope, it’s me trying to get at least a little work done during a migraine attack.
According to Elle, #migrainepose is a trending Instagram pose that’s “damn flattering.” I wish I’d know how beautiful I looked all these years that the pain-induced furrow between my eyebrows has been deepening into a rut.
We at ELLE.com love a weird Instagram pose, and the latest one populating on our feeds is giving everyone a headache. Well, it’s making everyone deliberately look like they have a headache. And it’s damn flattering.
Migraine Pose, coined by makeup artist Nam Vo, involves posing with one or two hands pulling your face up by your temples as if you had a, well, migraine. There’s a reason it’s trending: The pose tightens the face, makes your cheekbones look more prominent, and lifts the brows. It’s a temporary facelift for the ‘gram.
“I love it because the beauty of your hands frame the face and give it more structure. I always make my models pose this way,” Vo told me, “It’s also a great time to show off your manicure.” #Priorities.
My #priorities are reducing the stigma of this disabling disease that can rob people of any semblance of a normal life, teaching those without migraine how that migraine is so much more than “just a headache,” and trying to live as well as possible with a life that’s dictated by a terrible illness. Granted, showing off my beautiful hands and giving my face more structure are probably loftier goals. Perhaps I could have pursued those important priorities if I hadn’t spent most of my adult life disabled by migraine.
Ways to fight back against this blood-boiling migraine stigma:
Post a photo of yourself during a migraine attack to social media with the hashtags #truemigrainepose and #migrainepose
Tell Elle what you think of their perpetuation of migraine stigma. Twitter: @ellemagazine, Instagram: @elleusa, Facebook: @ellemagazine. You can also email them at email@example.com or firstname.lastname@example.org. **Do not use “migraine” in the subject line! These messages are being returned as undeliverable, while those with blank subject lines go through!**
Tell Nam Vo, the makeup artist who coined the term, what you think, too. Instagram: @namvo.
Through Headache on the Hill, patients and healthcare providers lobby members of Congress each year to increase NIH funding for research into headache disorders. The first year, participants were told that they would have to raise “big noise” in their own communities to see a change. This is something people who advocate for more research funding hear often: lawmakers must believe that the people they represent care about migraine and other headache disorders. That is, we won’t get research funding until we raise awareness about the impact these illnesses on people’s lives.
Miles for Migraine Raises Awareness, Research Funding
In 2008, Eileen Jones decided to make big noise by founding Miles for Migraine. After attending the first Headache on the Hill in 2007, Eileen, a nurse who has migraine, founded Miles for Migraine to raise both funds for and awareness about migraine. Since the first race in San Francisco, Miles for Migraine has raised $79,000 for migraine research and advocacy. Their goal is to fund 30+ fellowships to train new doctors to become headache specialists. Prior funding recipients include:
That $79,000 is just the start. Last year, the race expanded to Philadelphia; this year, a race has been added in Chicago. Depending on the city, races range from one-mile walks to a full marathon. If you’re unable to participate in or attend a race, you can still get involved through Miles for Migraine’s virtual race.
When Miles for Migraine comes up, people inevitably say that exercise is a migraine trigger, they’re too sick to exercise, or migraine makes their lives so unpredictable that they’re unlikely to be able to attend an organized event. I get this—all have been true for me at different times in my migraine life—and the people at Miles for Migraine get it, too. That’s where the virtual race comes in. You can recruit others to run for you, collect donations for a run/walk you do on your own (a short trip on the treadmill counts!), or you can fundraise without running at all. All those options raise both awareness of migraine’s impact on people’s lives and money for research and advocacy. Donations of at least $100 will get you a T-shirt and race goody bag. See Miles for Migraine’s virtual race on Crowdrise for more information.
2016 Miles for Migraine Races
San Francisco on Sunday, July 31: San Francisco Marathon (Mission Street & The Embarcadero); 5K Walk/Run, Half Marathon, Full Marathon
Chicago on Monday, September 5 (Labor Day): Naperville Last Fling (440 W. Aurora Avenue, Naperville, IL 60540); 1 Mile Run, 5K Run
Philadelphia on Saturday, October 8: Valley Green/Fairmount Park (120 W. North Western Avenue, Philadelphia, PA 19118); 2 Mile Walk, 5K Run, 10k Run
“Everyone relishes a migraine. They have a literal aura! Migraines foster the sort of pure narcissism that only intense, essentially benign pain can. We sufferers (that’s how it’s described, “migraine sufferer”) feel it is meet and right that the migraine should be dramatized in films like Pi or White Heat; this strengthens the perception that migraines are the hallmark of geniuses, or at least psychopaths.
“[Joan Didion wrote,] ‘My husband also has migraine, which is unfortunate for him but fortunate for me: perhaps nothing so tends to prolong an attack as the accusing eye of someone who has never had a headache.’ I disagree. What migraine sufferer wants to share the limelight? After all, we all know in our hearts that no one in the history of the world has ever experienced basically unserious pain like we have.”
This excerpt from an article called Head Case appeared on the Paris Review’s blog. The first reading left me furious, but I thought I must have misunderstood the post. I read it repeatedly, trying to identify the satirical angle. I sent it to Hart to see if I’d missed something. Because the Paris Review wouldn’t publish something so trivializing of a disease that can be disabling. Right? Wrong!
My first reflections on Head Case overflowed with expletives and name-calling. That’s not my style, so I set the topic aside to revisit. Here’s what I came up with.
Writers write what they know. The writer includes herself among the “sufferers,” so I can only assume she’s writing about herself—that she relishes the attention she gets from migraine, that she thinks her pain is the worst in the world. Instead of owning her feelings, she projects them onto everyone who has migraine. Of she does. It’s far easier to claim everyone with migraine has such nasty thoughts than to admit that you alone are being a jerk.
Some people probably do relish the attention they receive when talking about migraine. Some do engage in one-upmanship (though I’ve only witnessed this on the internet, never in person). But these represent a tiny slice of people who have migraine. Most of us are nothing like this. Most don’t share our stories to get attention or prove our “genius.” We share our stories to show how incredibly difficult this disease can be to live with. We share our stories because so few people understand how disabling migraine can be.
Migraine stigma is so strong that some people, like the writer of the Paris Review post, internalize it. Instead of believing the severity of migraine attacks, they think they are exaggerating or lazy, that they’re making a big deal out of nothing. My personal experience has shown me this all too clearly. In July 2013, I wrote in a Migraine.com article called Internalizing the Stigma of Migraine:
“No matter how much I write about the needs of migraineurs and work to reduce its stigma, that very stigma has insinuated itself into my self-perception. It will continue to haunt me whenever I have a migraine attack until I accept in both my mind and heart that I am not deficient or lazy, but have an illness that is in no way a reflection of my personality, desires, or attitude.”
I wrote those words almost exactly 10 years after migraine rendered me unable to work and eight years after I started this blog. I didn’t apply migraine stigma to anyone else, only to myself—and did so for years after I knew intellectually it wasn’t true. I have finally shed that internalized stigma, but cannot forget how how fervently I once believed it.
After my initial draft of nastiness, I began to pity a person who would publish such hateful things about herself. I’m still angry and find her pitiful, but it is tinged with compassion and sadness. I feel for someone who turns on herself because she has internalized this stigma. I’m sad that so many of us have done just this. But my empathy only goes so far. I cannot forgive someone for furthering that stigma by publishing such vitriol on the website of a revered literary journal.