Written By Jamie Valendy
Presented by Chronic Migraine Awareness, Inc.
My journey has a clear before and after line: October 2008. I was in a car accident, which involved a concussion and resulted in post-traumatic headache and migraine disease immediately becoming chronic-daily and debilitating.
At the time, my support system was made up of my fiancé, parents, and sister. Others, including friends, were supportive, for a time. But, as many with chronic conditions can attest to, the initial outpouring of support wanes and relationships change.
I’m not really sure exactly how I found the online headache community. I imagine that it was while researching headache disorders in the years after my accident. Reading others’ experiences and engaging with others in the community offered me support and encouragement in a way that I had never before experienced.
A couple years after my accident, I started my own blog, Chronic Migraine Warrior. It began as a place for me to process what I was learning and what I was facing living with a chronic, debilitating disease. Through writing, I found myself surrounded by a community of people that understand what it’s like to live with chronic pain / illness. A community filled with compassion, understanding, and support.
I’ve found that in sharing what I’m going through – my thoughts, feelings, experiences – people commonly echo back that my words resonate with them. That understanding, that “I get it,” is quite striking. It’s helped me in so many ways on my journey. There’s power in knowing that we’re not alone.
The online landscape has changed, since the early years of my chronic migraine journey. Social media outlets are now the primary place of online communities. A simple search in Facebook for ‘migraine’ yields a plethora of groups and pages, each with a different focus, energy, and community. This can be overwhelming, but it provides an opportunity to find what part of the larger headache disorders community is right for you. It’s important to recognize, too, that what group is right for you may change over time, and that’s ok.
One group that I’ve found a lot of information and connection from is Chronic Migraine Awareness (CMA). CMA is a community of members that understand the mental, physical, emotional, social, financial tolls of living with chronic migraine. We encourage one another to stay informed about our disease, connect with others, and support one another along our journeys.
The CMA has a group called Advocates Removing Migraine Stigma (ARMS). This is a group of hard-working advocates that contribute in many different ways, but all with the same goal. During Headache on the Hill 2020, some of the ARMS members gathered together at a meet and greet. There was a beautiful mix of relief and joy. The relief of knowing that we don’t have to hide ourselves. The joy of being seen, and of being in the presence of fellow advocate warriors.
Ultimately, community and the relationships we cultivate can provide connection, direction, and space to be our best selves. The individuals in the headache disorders community are vibrant and supportive. We laugh together, cry together, and cheer one another on. We’re a community of encouragers, holding on to hope and working together to build a better tomorrow for all those living with headache disorders.