How Retreat Migraine Changed My Life

Traveling Alone to Migraine Retreat

I was scrolling on twitter late one night when I came across a tweet: Lottery now open for Retreat Migraine, a 3-Day Experimental and Celebratory Event for those living with migraine disease.

This retreat sounded unreal. At that point, I had been off work for seven months due to my chronic intractable migraine disease.

If you live with migraine disease, then you know how lonely this road can be. Even though I’d be traveling to the event by myself, I knew that I would be surrounded by fellow migraine warriors when I got there – which was exactly what I needed.

The Powerful moments I experienced

RetreatMigraine began with a session hosted by the Migraine Diva and Dr. Melissa Geraghty, Psy.D, called “Migraine and Mental Health: The Good, The Bad & the Ugly.”

I was in a room filled with over 200 people who, like me, were hoping to gain new skills. While listening to Jaime Sanders, the Migraine Diva, talk about a failed attempt at suicide, I felt my heart rate increase, and tears begin to swell.

I made my way to the women’s bathroom, where, in a corner on the floor, I had a panic attack. I had forgotten all about Care on Call, a team of trained volunteers who were available 24/7 during the event to assist you with needs.

When I composed myself and rejoined the group, I shared my breakdown with three fellow attendees. They embraced me with a sisterhood that I haven’t felt in a very long time. There was no judgment or inappropriate context, just positivity and encouragement.

What I Learned About Myself

On the second day of Migraine Retreat, I attended a support session led by Dr. Dawn Buse, PhD., Professor of Neurology at Albert Einstein College of Medicine. I knew I had been bottling up my struggles with migraine and frequently felt like no one understood me.

With support from Dr. Buse and the other amazing individuals in the group, I began to see how similar our stories were. It was clear I was not alone on this journey.

I learned that it is okay to lean on others. You’d be surprised how many of your friends and family would love to be there for you.

Finding Inspiration To Advocate

On the last day of Migraine Retreat, we were introduced to the advocacy panel.

I watched and listened to stories of men and women who left their careers due to migraine disease. They found a way to merge a passion for migraine advocacy into a new purpose and were making a difference in the migraine community.

U.S Pain Foundation held a storytelling workshop where I and others like me were able to visualize and document how migraine has affected our lives – both the good and bad. Our stories were then published in the first-ever Invisible Project Special Edition.

I learned that if we ever hope to change the narrative around migraine and educate others about our disease, advocacy is the road to get there.

Starting Your Advocacy Journey

You are an important part of advocacy, but how do you begin?

Self-advocacy is the first step, and it requires you to educate yourself about migraine disease. Speak up for yourself during appointments with your healthcare providers.

Don’t stop looking for a migraine doctor until you find one who respects and listens to you. In many cases, a board-certified Headache Specialist may be appropriate. You can find one in your area in the American Migraine Foundation database.

Compile Your Talents and Interest

There is no right or wrong way to advocate. While getting started, I wrote down a list of my interests. I took stock of my experience, passions and talents. Then, I used this guideline to find organizations that lined up with my goals.

6 Ways You Can Advocate

1. Join a Support Group
   One of the first things I dove into was online support groups such as Move Against Migraine and Chronic Migraine Awareness. Support groups like these have an enormous amount of experience and advice just waiting to be shared.
2. Consider Fundraising
   Some of you reading this may enjoy fundraising and donating. Miles for Migraine, a nonprofit organization that hosts run/walk events to raise money for migraine research, is an excellent way to meet other warriors.
3. Attend Events – Virtually and in Person
   Attend events such as Retreat Migraine and Migraine World Summit. These events aim to educate you and the world. Expert physicians, specialists, and patients all come together to share their knowledge of migraine disease.
4. Lobby Your Legislators
   Maybe you’re interested in policy change. Legislative advocacy with Alliance for Headache Disorders Advocacy will be a starting point. Patients and healthcare workers unite to speak to Congress members about the effects of living with migraine disease.
5. Share Your Story
   If you enjoy writing, team up with Migraine Again as a contributing writer to serve others in the community.
6. Sport Shades in Solidarity
   Then there is Shades for Migraine Solidarity Day. Each year on June 21st, millions of people from all over the world wear sunglasses to show support for those of us living with migraine disease.

Finding Your Community

As you can see, there are several ways to advocate – there is no right or wrong way.

The warriors I met at Retreat Migraine inspired me and proved that you are more than your migraine. I have formed lasting friendships, and I am counting down the days until I can see my Tribe again.

Migraine is a tough road to navigate, but no one has to go it alone. Through community and advocacy, you can find purpose in pain and start creating change.

by Laquinda McCoy
contributor
Migraine Again