Brittany’s Migraine Advocacy Story
Brittany’s migraine advocacy story is written and told by Brittany S. 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.
Brittany’s Migraine Advocacy Story
It took many years to get where I am today as a migraine advocate. For me, it’s been a journey of growth and learning. Some people in my life understand that invisible conditions, diseases, and disabilities are just as real. It affects people with them just as much as people with visible conditions, diseases, and disabilities. So, I started out on social media asking others to just ask me my story instead of looking at me and judging me based on what they do not see.
Migraine Advocacy Story
I was later introduced to and discovered a world of migraine advocacy groups, events, and so much more. This is thanks to other migraine advocates who have helped me in my journey. These groups and advocates taught me about how even small things can be moments of advocacy. So, I joined Shades for Migraine, CMA ARMS, and other advocacy groups, and attended Retreat Migraine. These aided in providing knowledge and resources to help me with advocacy and my personal growth as an advocate.
I started wearing migraine and invisible disability t-shirts and other paraphernalia when I went places. This sparked many comments and conversations with others about what migraine is. My experience with migraine, and someone else’s migraine experience relate. Some of these conversations even helped individuals in finding out that what they called “headaches” was more likely migraine attacks. This led them to talk with their doctors about migraine. My mother and one of my friends were two such people I had conversations with about migraine. Both just figured that what they were experiencing were sinus headaches or headaches in general. But what they described wasn’t just head pain. It was light and sound sensitivity, nausea, and other various symptoms associated with migraine.
Migraine Advocacy in the Hospital
Another advocacy moment happened when I was at the hospital where I was receiving care for my fibromyalgia. It was Migraine and Headache Awareness Month and I had on my Shades For Migraine t-shirt. The nurse who was helping me that day saw my shirt and asked about it. She then asked me if I have migraine. I responded that I’ve had it for many years. She continued to ask me more questions about my experience with migraine and how I was diagnosed.
Later on, she explained that the reason she was asking me all the questions was that she gets headaches, but wonders if they are actually migraine attacks. So I asked her if she knew what migraine was or if she knew about any of the symptoms. The only thing, she said, was that they cause head pain, and didn’t really know anything else about migraine. I listed some of the symptoms I experience and discussed with her some of the common symptoms.
She thought about it, and then began shaking her head and telling me that frequently when she comes into work she gets attacks. Lights bother her, and she mentioned a few other symptoms she gets, along with having head pain. I replied that it sounded a lot like migraine and encouraged her to speak with her doctor, as I’m not a doctor. I encouraged her to tell her doctor about her experiences and symptoms. It could be migraine, but you also want to rule out that something else isn’t going on just in case. She asked what doctor I saw that diagnosed me, as she didn’t know what type of doctor she should be referred to. I told her mine was originally diagnosed by a neurologist, but there are also migraine specialists that can help her in diagnosing the cause of her symptoms.
Before leaving my appointment, I gave the nurse a piece of paper with migraine resources written on it that I have found helpful in my migraine journey. The nurse told me she was glad for the information because she had not known where to start or where to go to find resources. I included websites and groups that provide information, research, tools, and advocacy for migraine including Miles for Migraine. She had not heard of any of them before and asked me about Miles for Migraine. I told her about the organization and she was happy to have been informed about all of the migraine resources and groups that help raise awareness, advocate, and make connections for individuals with migraine.
I wanted to leave her with more to start her journey than I had to start mine. Having connections to others with migraine and resources to learn more has helped me in so many ways. This has led me to help as well as advocate for other individuals. Meeting and sharing with other individuals with migraine has made me feel that I am truly not alone, and I hope to help others to know and feel that too. Through my migraine journey, I’ve learned a lot, helped a lot, and advocated a lot more for myself and others than I ever would have previously.
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.
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.
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