You Need Community

Written by Alexis Ziegler

Originally seen on

Happy National Migraine and Headache Awareness Month. The phrase “I am not alone” is used quite a bit in the migraine and headache communities. When I was first diagnosed with migraine disease, I did think I was somewhat alone. I really know anyone who had migraine too until I needed a family history. I found out that my grandma, aunt, and two cousins on my dad’s side of the family have migraine. My grandma had them when she was younger but not anymore. My aunt and younger cousin have chronic migraine. My older cousin has migraine caused by his high blood pressure. I didn’t know there were many different kinds of migraine disease. It took a while for my neurologist to properly diagnose me but in the meantime, I went to my family for all migraine related questions. I felt less alone in all this with them. I did still feel alone though. My family lives a few states away and I don’t always get to talk to them everyday or see them. I will soon learn that I don’t need to talk or see my migraine community in order to not feel alone.

For maybe two years after my first migraine, my only sense of a migraine community was my family. Somehow people from the migraine community found me on Facebook. I was invited to join all these Facebook pages where we all can talk about what is going on with us and our migraine. I was blown away. Then I heard about Retreat Migraine 2019 and I couldn’t believe there was a conference for people with migraine, that just blew my mind away. I was lucky enough to go. I didn’t really know anyone that was going to be there. I kind of knew a handful of people that I met through Instagram, but I was going to the retreat alone without knowing anyone. I’m an introvert, always have been, probably always will be. I was very scared going into the first day of the retreat. Walking into that conference room was exciting but also very scary. The minute Eileen and Kevin started speaking, I felt at home. All my worries went away. As my mom says I was “with my people!” Everyone in that room either has migraine or is a caregiver for someone who has migraine disease. I never felt so at home before, that wasn’t my actual home and safe space. I was at a loss for words during the rest of the conference at the speakers. They were all amazing. At dinner the first night, I sat with some ladies I briefly met earlier. They are also from Illinois minus one lady’s roommate who is from Virginia. I was extremely nervous to go up to them and ask if I could sit with them. Flash backs of high school lunch came rushing back. They were super welcoming and, again, I felt right at home. This one lady and I hit it off right away, Abby. After the conference day was done, we hung out because we both have insomnia. I learned so much from Abby and the other Illinois and Virginia ladies. One thing I will always remember was that we were getting to know each other, and I said, “I have had chronic migraine for JUST 3 years.” Alicia said, “Don’t say just, 3 years is enough.” I was a little taken aback by that. I didn’t mean to downplay how long I have had migraine but most of the people I met have had migraine most of their lives.

When the retreat was over, I was very sad to leave because I had finally met my migraine family and I knew I’d never be alone again. Our bonds got stronger after the retreat. I am Facebook and Instagram friends with all the wonderful people I met at the retreat and even with some people I haven’t met in person yet. I have learned that I don’t need to see or talk to my migraine friends everyday to know I am not alone. They are always there for me, no matter what. After the retreat, I stayed close with Abby. She only lives a few hours from me, and we have visited each other a lot since we have met only a year or so ago. I mostly go to Abby now with all my random migraine questions. She has had chronic migraine longer than me, so she has a couple tips and tricks to help me. We both also deal with bad anxiety. One night I was out with my friends from around where I live, and I had a panic attack. I immediately called Abby. She helped calm me down, reminded me how to breath properly during an attack. I know I can call her anytime, day or night and her the same to me. She knows exactly what I am going through. Her migraine was constant for years and no medicine really worked for her, just like me, until Aimovig came out. Abby has now been migraine free for almost two years. The whole migraine community and I are extremely happy for her. With my emotional support Abby and the rest of the migraine community by my side, I know I will never be alone. All their love of not wanting anyone to feel alone in their fight with migraine disease, inspired me to start my Smiley Migraine Instagram page to share my story, relatable quotes, what’s going on in the migraine community, and what’s going on with me and my migraine so no one ever feels alone.

I got the Retreat Migraine logo tattooed because it is a daily reminder of the wonderful community I am a part of. The phrase “I am not alone” is kind of self-explanatory but it goes with the logo so I remember that I am not alone because I have my migraine family.
I am Alexis Ziegler, 22 years old and have chronic migraine.

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