When I first was first diagnosed with chronic migraine after an accident, my family longed to understand what I was experiencing. Many did not know much about migraine disease prior to me being diagnosed, only hearing the words “migraine” or “headache” in passing, let alone all the complexities of the disease. My disease began to impact everyone in the family. My parents began to worry about me constantly, and attention faded away from my brother. My family was not alone. Research has shown that migraine impacts the entire family.
They felt lost, confused, unable to fully understand the pain and other migraine symptoms I experienced on a daily basis. One way they began to feel more connected to me was to get more involved to help me navigate the complexities of a chronic condition.
While many think donations are the main way to support a cause, my family and I have taken many other steps on this journey to help spread the word:
- Becoming my Advocate. Whether it’s driving me to or attending a doctor’s appointment with me, calling my insurance my behalf, or sticking up for me among their family and friends, I know my family has my back. Sometimes my mom or dad will attend an important doctor’s appointment, helping to take notes, and joining in on the conservation. Further, it’s a great opportunity for my biggest advocates to get educated with me. Sometimes the situation feels too overwhelming and it is great to have the support and assistance of my loved ones.
- Share how my story has impacted them with family, friends and co-workers. Migraine disease does not just impact me, it impacts my loved ones too. My family has seen me wither in pain, lie in dark, quiet rooms with the covers pulled over my face and miss out on or leave events early. My mom frequently hears, “I hope she gets better soon” or “I hope they’ll figure out a treatment at the next appointment,” and my mom always clarifies migraine is a “chronic, life-long condition, currently, there is no cure.” Through sharing how migraine disease impacts them directly, they are spreading awareness further and expanding the migraine community.
- Participate in national and local migraine events to raise awareness. There are multiple organizations from Coalition for Headache and Migraine Patients (CHAMP), a coalition of patient advocacy organizations in the area of migraine, cluster, and headache disease, that put on annual walks, virtual events, educational days, and present speakers year-round. I’ve participated in quite a few; it’s been incredible to be in a room full of so many amazing migraineurs and their support systems. Last year, my mom and dad joined me at one of the many Miles for Migraine walks, and the comradery of being around my migraineurs and their support systems was so special. We walked with another family and exchanged stories. My parents were able to make connections with parents of another young adult living with migraine. It acknowledged they are not the only ones struggling with the unknowns of migraine disease.
- Be heard on a community level. Write a letter to the editor in a local newspaper. Write a blog post. Share your story on Facebook or Instagram. There are so many creative outlets that can be used to share stories that create community. My family and friends continue to share how migraine disease impacts them through social media.
- Wear Migraine Apparel. Representing migraine motto t-shirts, pins, and purple flare can help spread education and spark conservation. When my family and I wear our migraine t-shirts and pins in the community, we are often stopped by others who tell us “I (or my brother, sister, friend) have migraine too.” We stop and share stories, forming connections. Sometimes, people are just curious about migraine disease. My family and I stop and share how migraine is “more than just a headache” and how it has impacted my life and theirs.
- Reach out to your local and state lawmakers. Before attending Headache on the Hill, this task was a bit daunting to me. However, our representatives want to hear from us and want to hear what is important to us. Elected officials want to best serve their constituents. The simplest way is to write or email a letter to your elected representative. A great place to start is the Alliance for Headache Disorders Advocacy (AHDA) and support their current initiatives. You can find your senators here and your representatives here. You can also make phone calls and visit your representatives in-person to discuss how migraine has impacted your loved ones. As a family, we’ve written letters to our senators and representatives telling my story and requesting support of AHDA initiatives or other bills that impact patients with migraine.
- Educate. Educate. Educate. Continuing to educate oneself is the best way to stay informed on the latest research and policy developments in migraine and headache disease. The past few years have been full of new pharmaceutical developments such as calcitonin gene-related peptide (CGRPs), gepants, ditans and new devices. By staying up-to-date on the latest research, one can make better-informed decisions. My family and I stay informed on the latest research. My family always shares the latest research and interesting articles with me. I also find the more education my family and friends have, the less unwarranted advice I receive. While I know many loved ones mean well by sharing tips and tricks that they find online, I find that research-backed methods are the most helpful to me. Through education, there are fewer of these awkward situations where I have to explain why unwarranted advice/certain treatments will not be helpful for me. Further, my loved ones can continue to spread the information they learn within their circles.
I’m grateful to have the support of my loved ones – my family, friends, and even my dog. Their support has been vital in my healing. They have been there with me, despite the confusion, messy, and unpleasant parts of migraine. And now, they continue to be surrogates in my advocacy for migraine awareness and prevention.
by Nicole Sf
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