39 Million Opportunities
There are more than 39 million residents of the state of California. Thirty-nine million people in the United States own a voice-recognition device. There are roughly 39 million citizens of Poland. Thirty-nine million seconds is more than 450 days.
And 39 million people in the United States live with migraine.
More Than a Number
As a society we are mesmerized by numbers. Just look at how private health insurance functions in our country. Insurance companies don’t look at people as people. We are numbers on a spreadsheet and our health is gambled on based on profitability. We are social security numbers, bank account numbers, and license numbers.
Health care advocacy inverts this construct. Health care advocacy puts people first and teaches us that we are more than a statistic.
39 million dreams.
39 million acts of strength.
39 million unique people living with a misunderstood disease.
And we have 39 million opportunities to make change.
Share Your Truth
When we share the truth about our disease people can start to understand the daily and invisible impact migraine has on the 39 million people who live with it. Some may need the numbers to be persuaded of the significant impact of migraine disease. But others are moved through their heart. They need to hear our stories. If you had 60 seconds with a decision maker what would you tell them to move their heart? What tone would you use? Would you bring a photo of what an attack looks like for you? Would you show a clip of the popular migraine documentary Out of My Head?
With limited energy and time, we need to be smart when we tell our stories. Take some time to think about your story. You never know when you will have the opportunity to make change.
Work With Your Health Care Team
Your doctor, nurse, office manager, and others are there to help. Ask them if they are involved in advocacy. They are as likely as you to be frustrated with the prior authorization forms you may have fill out to get access to your treatment. Find ways to advocate with your medical team. Send them to Alliance for Headache Disorders and The Headache and Migraine Policy Forum for more information.
Build Your Community
People living with migraine are resilient. And we can learn from each other even though migraine causes us to be solitary. We are often confined to dark rooms. Smells can trigger us. Light can wreak havoc. But we can still find support and build community. There are online bloggers, communities, and organizations looking to help. There are opportunities for walks. There are fun awareness events like Shades for Migraine.
You don’t need to be alone. Building community is crucial because we are stronger together. The CHAMP (Coalition for Headache and Migraine Patients) hosts a great resource.
Redefine Your Worth
Recently I participated in a call hosted by our (Global Healthy Living Foundation’s) 50-State Network.This is a network of people throughout all 50 states (and Puerto Rico) who live with chronic disease and want to use their voice to make systematic change. A highlight of this call was how as advocates, we need to redefine what productivity looks like. Living in a number-driven society, our worth is often defined by our job and its salary. The moderator of the call encouraged the patient advocates to take a step back and redefine this.
Sharing our stories is being productive.
Signing a petition is being productive.
Living in spite of a deliberating and painful disease like migraine is not only productive — it is brave.
We are 39 million opportunities to create change.
Joseph Coe is the director of digital content and patient advocacy for the Global Healthy Living Foundation. He is also a migraine patient.