Advocacy in the Migraine Community
As many in the migraine community might have wondered at one point or another: How can a disease as debilitating as migraine continue to lack the recognition and understanding that many other comparable diseases receive? Why is there a lack of doctors who specialize in migraine treatment? Why does funding for migraine fall well behind other debilitating conditions?
For those who struggle with this disease each day, it is evident the toll migraine takes on our lives and the lives of our loved ones.
Seeing specialist after migraine specialist
We recognize the challenges that result from having to visit doctor after doctor trying to find someone who understands migraine.
Medications "for" migraine
We recognize the unfortunate reality that most migraine patients are forced to use medications that were not originally intended to treat this disease, but instead are used to mitigate auxiliary symptoms. We know that despite these unique symptoms, there have only been a handful of novel drugs created to prevent or reduce the severity of migraine attacks in the last 50 years.
Migraine: An invisible illness
With this information well-known by the millions of people impacted by migraine, it is almost unfathomable to imagine that this disease could be so misunderstood. This misunderstanding can be partially attributed to migraine’s status as an invisible illness.
Becoming a migraine advocate
As I’ve written about previously in Honoring My Sister’s Migraine Journey, my sister Melissa struggled with chronic migraine disease which ultimately led to her dying by suicide. In the wake of her death, I wanted to use her story to advocate for an increased understanding and recognition for the millions who live with migraine.
This has taken different shapes over the years, but ultimately, it has evolved into my understanding that one of the most effective ways this community can change the narrative surrounding migraine is by advocating for changes to public policy.
Headache on the Hill 2018
When I began to connect my passion for sharing my sister’s story and advocating for a shift in policy, I was in graduate school studying social work. During this time, I was fortunate enough to attend Headache on the Hill (HOH) in 2018. For those not familiar, HOH is an annual event where advocates from throughout the country convene in Washington, DC to lobby our lawmakers to support legislation that will benefit the migraine community.
My experience at HOH was transformative. To be surrounded by a diverse group of migraine patients, caregivers, and doctors advocating for change was a powerful moment. Meeting with elected officials and their staff to share my story — and our collective stories — proved to be an instrumental step to prepare me for my next chapter.
Working in a congressional office
Unfortunately, I have been unable to return to HOH since my first visit, but not without reason. As I was gearing up to attend HOH 2019, I accepted a job in a congressional office. Less than a year removed from my first experience actively engaging with the political process, I was now on the other side of those conversations.
While I thought advocacy was important before I worked in a congressional office, it does not compare to the role I know it plays in helping elected officials understand what’s important to their constituents now. Due to the innumerable issues that federal legislators must consider daily, it’s imperative that they, and their staff, hear from those they represent.
Migraine stories spread awareness
When I attended HOH, they taught advocates it’s the stories of the real-life challenges faced by migraine patients and caregivers are what stick with the congressional offices and increase our likelihood of being effective advocates. While congressional offices are evaluating specific policy proposals each day and hear from stakeholders in every industry, there is nothing that quite compares to a true story about how a constituent’s life has been affected by the issue they’re advocating for. It’s very helpful to those on the other side of the table to put a face and story to these pieces of legislation.
Spreading political awareness of migraine
Though I recognize everyone — specifically those who live with migraine — can not always pack up and head to the capitol, I think it is of paramount importance to share your story with your representatives in whatever capacity you are able. It can be as simple as writing an email or placing a call. However, when using one of those methods, remember to bring your story to life. Again, connecting the personal story with the legislation is much more likely to yield positive results. As I mentioned earlier, migraine is generally misunderstood, so we must work to educate our representatives. If you want to take it one step further, I encourage you to attempt to schedule a meeting with your representative or their staff.
Taking these small steps can help you begin to build a relationship with your representatives, and hopefully, add an ally to the migraine community. If we all take action and share our stories, I’m hopeful we can change the narrative surrounding migraine and bring this disease into the light.
How much has your migraine disease changed or evolved over time?