What I thought would be a typical trip to New Jersey with my sister in September 2017 turned out to be an experience that would significantly impact my life. As we drove to the Philadelphia International Airport to drop off a friend, my sister flipped through the radio stations to find something good to listen to. She took a brief pause on a station that happened to be airing a podcast about migraine and headache diseases. She kept flipping through the stations, and I immediately blurted out, “Wait, wait! Will you go back to that station please?”
Aside from what my neurosurgeon explained to me about migraine and the few pages I had read on the hospital website, I did not have much information on my own condition. Nearly two years after being diagnosed, I was still searching for answers and an explanation. My sister went back to the station, and I listened intently to the podcast. Shirley Kessel, Executive Director of Miles for Migraine, was the guest. It was the first time I heard anyone else verbally express exactly what I was feeling. “There is so much misunderstanding around migraine,” she said. “It is often misdiagnosed and misunderstood by those in the general community. They do not always understand how debilitating it is.” I whispered to myself, “Exactly.”
As Shirley continued to describe what she and her family experienced with migraine, my sister turned to me and asked, “Is that what you go through?” “Yes, that’s exactly it,” I responded with tears in my eyes. Here, on this radio station, was someone who seemed to have an up-close and personal view of my every-day life, dictating the words I’d been searching for over the past two years.
The podcast continued, and I was shocked to hear that the treatments I was recently prescribed were the same treatments that have been used for migraine patients for decades. I thought about all of the advancements in treatments for other conditions, but nothing for migraine. “We have to do something about this,” I said to myself. But I didn’t know what or how. Then Shirley mentioned the Miles for Migraine walk/run and how it focuses on increasing public awareness about migraine and headache disease and the need to fund migraine and headache research. The next words shared on the podcast stuck out to me and have stayed with me to this day: “If those of us that experience migraine and are debilitated by migraine don’t stand up to show the public that this is a problem, new treatments will never be developed.” Before the podcast ended, I went on the Miles for Migraine website and registered for the upcoming walk in my state, which was only three weeks away.
I realized that migraine is such a stigmatized disease. There are so many people who have episodic migraine or who are not debilitated and able to treat their condition. However, having chronic migraine means constantly having symptomology that affects my everyday life, and I was silent about it. It’s not visible to the human eye, making it harder to understand by those who do not experience it, so I said nothing.
I had to become my own advocate; not just for better treatment options, but so my loved ones could begin to truly understand what I experience. As I began fundraising for the upcoming walk, I had to speak out about migraine and how it affected me. The support I received from my family and friends was overwhelming.
My first Miles for Migraine walk was October 2018. Aside from doing some door-to-door fundraising in college, I had never participated in walks/runs/marches for any causes. I did not know what to expect. Would we be walking door-to-door asking for donations? Would we be walking/running through the streets with banners and talking to passers-by? As I pulled up to the event early in the morning, after what seemed like the longest drive from Maryland to Northern Virginia, I started to get a little nervous. I went to the tent, registered and collected my goodie bag, and waited for my friend, who was supporting me, to come. So many people began to introduce themselves, and we began sharing our migraine stories. We walked (no, I did not do the run) and got to know each other better. This was the first time I was around anyone experiencing migraine disease, and the first time around people who “got it.” I don’t have enough fingers to count the number of times I said, “same thing with me” when someone shared their story. So many people in one place with my condition and I didn’t have to hide anything. I found a community.
Since that first walk, I’ve attended the event every year. The Miles for Migraine walk is nothing like I initially expected. It is so much more. It has been a great opportunity for those in the migraine community to meet and connect with each other. I never saw myself becoming an advocate, but I realized that those of us who experience this debilitating condition have to be our own advocates. We have to speak out in order for the lives of migraine patients to improve and to raise awareness to help treat migraine disease. We’re able to have the kinds of conversations that don’t happen with the ordinary person.
Aside from my friend that walked with me in support, I showed up that day for my first Miles for Migraine walk not knowing anyone. I left with a brand new family. We are not meant to be alone. It’s a basic truth that people need each other. We are stronger and better together. You need community, I need community. Miles for Migraine paved the way for me to find my beautiful, loving migraine community.
by Anikah H. Salim, DrPH, MPH, CPH
Miles for Migaine