Migraine Advocacy: Giving Voice to the Invisible

Migraine advocacy is the most powerful way to bring both hope and change. So many with this debilitating disease suffer in silence or feel they are alone. For the person living with migraine, having an understanding from all people in their lives could be a game changer. Through understanding comes empathy and compassion. So how do we advocate to make an impact? How can we empower people to be their own advocates?

Message: You Are Not Alone

Migraine has the ability to isolate and give the perception that no one can understand. However, The American Migraine Foundation  explains, “Migraine affects 1 in 4 households in the U.S. and more than 1 billion people globally.” This disease affects so many people. This means migraine is something that could bring a community of people together not only for encouragement but also for change. By creating an awareness we create hope. We must send the message that migraine is not something to suffer from in silence and that there are people who understand. We also need to find ways to include the people in our lives as a part of our migraine journey. 

Everyone Can Be An Advocate

Each person living with migraine has a story to tell and that story might be the one that inspires someone else to keep going or to share their story as well. Being an advocate doesn’t take a specific degree or complicated skill set. It takes courage and honesty. Adding migraine education to those traits would only make the advocate more convincing and influential! Learning more about migraine and being more confident to share with others is a part of advocacy too. 

The most powerful advocates are those people who know what it is like to live with migraine and are passionate about using their voices. Finding a sense of community and unity empowers others to speak their truth as well. If you have a story, share it. You could be the one who makes a difference in someone else’s life. 

Doctors, We Need You

In the migraine world and life, there are many factors that enable the person with migraine to live their best life. This includes treatment options, health care, and a support system. What this looks like for each person can be different. The hope is for all people with migraine to find a way to live the life they feel called to live and not be held back by the stigma that comes with migraine. 

In order to live that life, people with migraine need to be empowered and supported to be their own advocates. Healthcare providers can make a difference. The conversations with doctors about symptoms, triggers, and treatments are very important. In addition to that, discussing how the patient could advocate for themselves at home and work is just as valuable in the success of their treatment plan and life. Doctors have the ability to be a patient’s lifeline so to speak. A provider who shows empathy and looks beyond the chart to see the person is who we need in our advocacy journey.

So, how do we make this happen? A strong provider-patient relationship is a good start. Trust in our doctors means we can look to them not only for medications or treatments but for hope in how to live life with migraine as well. Caring for the whole patient is so important. Take the time to see how migraine is affecting their daily life, relationships, and career. Give people with migraine information to share with others and remind them that migraine is not something they caused to happen. Education can lead to increased understanding and give a voice to those who feel invisible. 

On A Personal Note

Migraine has impacted every area of my life. As a mom, wife, and teacher I have seen the reach this disease has. While I am very blessed, my journey is full of both frustrations and wins. These are in part due to the advancements in migraine medication and treatment over the years. I have access to new medications that I couldn’t take before. 

However, I live with the fear of what will happen if they stop working. Over the years I have had to work through difficult times in my career and I almost gave up hope of having a family. Migraine is not kind so we have to do the work of trying new things and persevering through the hard times.

My heart has been blessed by a sweet family in the midst of my migraine journey and I am so grateful. I know many have given up on that hope. My passion is to make a difference in the migraine world. There is so much work to be done. There is not enough research and we need additional treatment options. The large number of people suffering from migraine should ignite a passion in us to fight for change. 

Maybe it is you, your sister, or your mother that has migraine. Or maybe you are a provider who has the chance to help patients. My challenge to you is to think about how migraine changes life and then ponder a different thought. How could your voice change your life or the one of someone you care about? 

If you are interested in learning more about migraine advocacy, please visit our ACT Now program.

Sources

The American Migraine Foundation, June 15, 2023, https://americanmigrainefoundation.org/migraine-101/

Association of Migraine Disorders, June 16, 2023, https://www.migrainedisorders.org/education/patient-resources/

Lindsey de los Santos Bio

Lindsey has had migraine for 30 years and is a passionate migraine advocate. She started migraineroad.com to support people with migraine, is an Emerging Advocate for The American Migraine Foundation, and is a freelance writer for related topics.