I’ve lived with migraine for most of my life, and for most of my life I kept it to myself, only letting close friends and family know what I was going through. Then one day, after a week of non-stop migraine pain, the realization dawned on me that I had to tell my story — beyond just my inner circle.
I asked myself a lot of questions after that. What can I do? How do I do it? Who will listen? Where do I begin?
I wasn’t sure how I could help the migraine community when I was having trouble helping myself; I felt like I had so much to learn. My migraine disease didn’t seem to be getting better, but things were changing and I felt compelled to take some sort of action. My blog, My Migraine Life, started as a platform for sharing my story, but over time became something much more powerful — it became a way for me to connect with my migraine community and become an advocate for myself and others living with migraine.
An advocate is someone who publicly speaks, supports, and acts in a way that pushes towards change with a cause. There are a variety of ways to do this, both big and small. Below are a few of the ways I was able to get more involved in my community over the years. If you’re interested in getting involved, these may be good places to start.
Get informed and teach others
Find a reputable and experienced doctor who will be your partner. Your doctor should be willing to listen to you, and to treat you as an individual with a range of therapeutic options that may fit your needs. Everyone is different and each doctor should respect your journey and what works best for you.
Read blogs from others living the migraine journey. Blogs can offer insight into others’ struggles and make you feel less alone. My blog includes personal stories, product reviews, ways to get involved with foundations, and other information, but most importantly I try to approach everything with compassion for the readers. Just reading others’ stories can provide a sense of community that you may not have in your everyday life. Knowing what others are going through and taking pieces of their journey to fit yours can be really empowering. Every blog provides a different story describing how vast and unique migraine disease is.
Tell your story to others. Not all stories need to be told in a blog format. Telling your loved ones how you’re feeling can help them better understand how they can help you. Explaining your needs to your coworkers or boss may make it easier to request accommodations and explain in your own words what you are going through. With an invisible disease, your words make your struggle visible and more real to others. The more you tell your story, the more you may realize that you’re not alone. I have bonded more deeply with many people by being honest and listening to their story. We all have a story to tell, and the more we share, the more opportunities we find for connection, support, and stigma reduction.
Share on social media. If you are not comfortable sharing your personal story online or in person, sharing others’ stories and events is a great way to spread information and awareness. A “share” or “like” provides feedback, support, and motivation to the person who created the post and allows you to introduce these topics to your own followers on social.
Become part of an online group. Given the unpredictability of migraine, face-to-face meet-ups are not always possible. Online groups, either on social media or other platforms, offer a chance to connect from the comfort of your own home. In these groups, members can share their experiences and thoughts, provide encouragement and feedback, tell stories, and give support. You can chat with people all over the world and feel connected by your common interests and shared experiences. With the isolation of migraine, online friends can be a powerful resource and one that may be a lifeline outside of your walls.
Follow credible sources. While the Internet can provide a lot of great resources and opportunities for connection, it’s important to seek out credible sites that provide evidence-based information — and to have the information validated by your doctor or healthcare provider.
Follow foundations and groups that sponsor fundraising and advocacy events
I personally follow Miles for Migraine races and events. These events aim at “improving the lives of migraine patients and their families, raising public awareness about headache disorders, and helping find a cure for migraine.” These events allow you to raise money and get out with the community to walk, run, or even relax with fellow migraine warriors. Check if they are coming to your city or hold your own local or virtual event.
The American Headache and Migraine Association (AHMA), the patient arm of the American Headache Society (AHS), holds an in-person patient conference once a year.
The American Migraine Foundation started the “Move Against Migraine” campaign and has weekly Facebook Live events to mobilize the migraine community and raise awareness and support for migraine research.
Headache on the Hill is an annual event in Washington D.C. organized by the Alliance for Headache Disorders Advocacy (AHDA). During this event, migraine patients, advocates, and health professionals lobby members of Congress around a variety of topics in migraine research and care.
Get involved with Migraine Awareness Month
June is Migraine Awareness Month — the month to be active on social media and in your local migraine community! There will be many opportunities for you to get involved from the comfort of your own home. After you’ve followed the blogs and foundations, share, comment, and like their information. The more that #migraine or #MHAM (migraine headache awareness month) can be trending, the more awareness is spread.
Wear purple or migraine apparel to start a conversation. Just wearing migraine awareness clothes or hats can provide someone with the opportunity to approach you and have a conversation about migraine. It opens discussion and gives a face to the disease.
Shades for Migraine is “a campaign to promote migraine awareness and create a viral buzz for a disease that affects over 1 billion people worldwide.” They promote migraine solidarity day on June 21 and encourage you to wear a pair of sunglasses and post it to your social media accounts to show support.
The takeaway: Advocacy is everywhere
If you are having an open, honest conversation with your doctor, then you are advocating for yourself. If you are not able to attend an event, then share it. If you are not able to tell your story, then comment on and connect with someone who is. If you are not able to explain it to your friends, then perhaps an online support group is a good option. There are so many ways to be a migraine advocate, both large and small, and each way counts towards steps to better understanding, research, treatment, community, and quality of life.
For more information on how to manage migraine, reach out to your doctor or healthcare team.
MIG-US-NP-00135 MAY 2019