5 Ways I Advocate for Headache Disorders

“5 Ways I Advocate for Headache Disorders” is written by Anna and edited by Miles for Migraine team.  Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to individuals that personally experience a health condition.

5 Ways I Advocate for Headache Disorders

When I joined my first migraine support Facebook group, I had no idea the journey I would be embarking upon.  I’m thankful there are so many different ways to advocate for headache disorders.  Whether someone needs to find a new headache specialist, see more treatment options to discuss with their doctor, or need ideas on coping with the emotional toll of migraine, resources are key.  As a community member, I love finding resources and sharing them with others.  Knowing there are many resources can be lifesaving and give hope to someone who feels alone and out of options.

Each advocacy role is different and vital.  I have found a passion in advocacy and there are many ways you can find your passion, too.

Learn

I have joined training programs such as the Miles for Migraine Fellow and Advocacy Training program so that I can learn more about the ways I can make a difference and the issues involved.  I have also trained with Patients Rising and CHAMP’s ECHO program because each program has a different focus so I can learn more. These programs have given me resources and opportunities to practice advocacy in safe settings allowing me to build my confidence.  Learning alongside other advocates helps me build connections and friendships while advocating for the needs of the community.

Raise Awareness

Participating in the Miles for Migraine Run, Walk & Relax events virtually and the Cluster 5K not only allows me to raise awareness on social media, but they also give me a t-shirt I can wear.  I love wearing these shirts for special things like donating blood or doctor appointments, but also more simple things at school or community events.  T-shirts are a quick conversation starter which gives me an opportunity to connect them to more resources but also allows me to hear their story.  It makes it easy to have face-to-face conversations and allows others to know I understand.

Provide Support

Joining the administration team of the Facebook groups, Hope for Migraine and Migraine Meanderings, has given me many opportunities to hear stories and help connect members to resources.  We have developed programs to help raise awareness & and educate while giving members a platform to share their stories through our “Empowering Patient Voices” initiative. 

Policy Opportunities

2021 Headache on the Hill was my first really big chance to learn about how, as an advocate, I can get involved in telling my story for policy changes.  This event allowed me to speak to my representatives in Congress, along with their aides, so they can better understand the people that are affected by headache disorders.  I have also experienced two public commenting periods with CMS in regards to oxygen for cluster headache patients.

Tell My Story

I have been able to share my story in various ways.  While it is empowering for me, the reason I share is so that others know they are not alone and talking to them about topics that come up whether it’s how to talk to a doctor about new symptoms or about the emotional toll of having a chronic pain condition.  I began by telling my story in Facebook groups.  Writing is my favorite way, but I won’t turn down an opportunity to speak because I know how important it is for stories to be shared.  I write for Migraine.com and Migraine Meanderings.  My story was featured in the Invisible Project’s 5th edition of the Migraine & Headache Diseases by the US Pain Foundation.   I was also asked to share my journey with SUNCT at the Association of Migraine Disorders’s 2021 Symposium.  

I’m so thankful for each and every way I advocate; no one way is too small.  How will you advocate for headache disorders?

Tell your Advocacy Story

Do you have an advocacy story to tell? What is one of the most memorable advocacy experiences in your headache disease journey/daily life? Try to recall a time when you practiced advocacy. Perhaps you shared your story, posted on social media, or attended an advocacy event such as Headache on the Hill or a Miles for Migraine event.

Looking back on that experience, what did you notice? Did you experience a negative moment such as shame, stigma, or a positive moment such as joy, hope, or relief? If there was conflict, did you resolve it or was it a conflict that still affects you today? If the outcome was positive, how did that make you feel? Did the outcome cause you to advocate again for yourself? How has your most memorable story shaped you today? There is no right or wrong way to share your story.

Donate

Are you inspired by these advocacy stories and want to donate to  Miles for Migraine? All or part of your donation may be tax-deductible as a charitable contribution. Please consult with your tax advisor. Funds raised help with our operational costs so that we can continue to produce races and youth camp events. Money raised through donations and race registrations goes directly to medical organizations researching migraine.