I Am Not Alone: What I’ve Learned About Others Living with This Disease

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 didn’t think I knew anyone else who had migraine 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 disease. My older cousin has migraine caused by his high blood pressure. I didn’t know there were 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 my migraine-related questions. I felt less alone in 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 every day or see them. I soon learned that I don’t need to talk to or see my migraine community in order to not feel alone.

For about two years after my first migraine, my only migraine community was my family. Somehow people from the migraine community began finding me on Facebook. I was invited to join several Facebook pages where we all talk about what is going on with us and our migraine disease. I was blown away. Then I heard about Retreat Migraine 2019, I couldn’t believe there was a conference for people with migraine. That blew my mind, and I was lucky enough to go. I kind of knew a handful of people that I met through Instagram, but I was going to the retreat without ever meeting anyone in attendance.

I’m an introvert, always have been, probably always will be so I was very scared going into the first day of the retreat. Walking into the conference room was exciting but also very scary. The minute CHAMP’s Director of Special Events, Eileen Brewer, and CHAMP’s Executive Director, Kevin Lenaburg, 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 have never felt so at home, in a place that wasn’t my actual home or safe space, until then. I was left speechless by the depth and wisdom of each speaker. They were all amazing. At dinner the first night, I sat with some ladies I briefly met earlier. They are also from Illinois expect one woman, who is from Virginia. I was extremely nervous to go up to them and ask if I could sit with them. Flashbacks of high school lunch came rushing back. They were super welcoming and, again, I felt right at home. One lady, Abby, and I hit it off right away. After the first day of the conference was done, we hung out most of the night 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 like that, 3 years is enough.” I was a little taken aback. 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 every day to know I am not alone. They are always there for me, no matter what.

After the retreat, I stayed close to 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 usually go to Abby now with all my different migraine questions. She has had chronic migraine longer than me, so she has a couple of tips and tricks to help me. We, also, both live with bad anxiety. One night I was out with my friends from home, and I had a panic attack. I immediately called Abby. She helped calm me down, reminded me how to breathe properly during an attack. I know I can call her anytime, day or night, and that she can always call me. She knows exactly what I am going through. Her migraine was constant for years and no treatment 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. Their desire 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 self-explanatory but it goes with the logo to remind me I always have my migraine family.

I am Alexis Ziegler, 22 years old and have chronic migraine.



by Alexis Ziegler

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