CMA Founder’s Personal Connection to Remembrance Day

Did it ever occur to you that you might get migraines from the level of energy it takes to maintain your dishonesty and delusion?

This is an actual comment someone posted on Facebook in response to a disagreement about women being second-class citizens. By trying to insult me, he also insulted our mutual friend who lives with migraine disease. Does he think every woman with a headache is dishonest and delusional? Talk about stigma!

What is Migraine?

We use the word migraine, without the s — similar to the word asthma or epilepsy. Migraine is a neurological disease falling on a spectrum from mild to severely debilitating with attacks that can last hours, to days or even weeks. Experiencing migraine pain is just one of the more than 43 symptoms that can accompany an attack. The pain can be so agonizing that using a drill or cutting off your head seem like viable options. Migraine doesn’t occur from “maintaining dishonesty and delusion” or any thought process.

Many of us live with migraine stigma, which places more burden on us. My first experience with migraine treatment occurred when the first doctor I saw told me my ponytail was too tight and causing my headache. I felt dismissed. This prompted me to look for a second and third opinion. There were a string of doctors, tests and diagnosis after that visit. In 2003 I finally received an accurate diagnosis. By that time, I had progressed into intractable chronic migraine. I thought that getting a diagnosis was the end of my journey, but this began the era of trial and error of many medications. Each time I started a new medication, I thought “this will be the one that works.” Each time, the medication failed me. When things didn’t get better, I became desperate.

My Personal Connection to Remembrance Day

Desperation led me to Facebook where I found others looking for answers. They became the support I needed but couldn’t get from the medical community. Chronic Migraine Awareness, Inc. (CMA) was created out of that need for support, compassion and understanding from people who were living with chronic migraine. We shared our stories, ignorant comments, how others thought we weren’t trying or doing enough to combat our disease and feeling like a burden to those we love. And, most importantly, we connected about what it’s like to survive every day living with this debilitating disease.

Despair is common when you live with unrelenting, daily pain. Once you combine daily life and all that entails, it all becomes overwhelming. When treatments fail, hope fails. In March of 2013, I decided that if I didn’t find real help by June, I would end this agony by suicide. I wasn’t living. I was sitting in my cave, the laundry room, all day. It was the darkest, quietest room in the house. I was tired of being a burden. Thankfully in April of that year, I found a doctor at a patient pain conference who offered to help and he did.

The CMA Support Squad

That experience left a permanent mark on me. I created The CMA Support Squad. The Squad is a program made of people living with chronic migraine who know  the importance of hope. They reach out to people who feel hopeless, sending cards and encouragement to let them know that they are not alone. We lift each other up, despite being beaten down ourselves. One of the members was a young woman who was about 21 years old, Melissa Dwyer. I had seen her posts and pictures where she vocalized how desperate she was for help and couldn’t get it. Despite her struggles with chronic migraine, she was still supporting those around her and was an active member of The Squad. Meilssa’s hopes and dreams were to live a life without the agony of chronic migraine.

Remembrance Day

June 7, 2013 is a day I’ll never forget. Melissa had taken her life. Today, we know this as Remembrance Day. When people say migraine is just a headache and dismiss what we go through, it minimizes the disease and discards our experiences. More than 42 million people live with migraine disease, each with the potential to transform into chronic debilitating migraine. We commemorate June 7 during Migraine and Headache Awareness Month as Remembrance Day. We honor those whose lives were cut short by this devastating disease. Never let anyone tell you it’s just a headache — educate yourself, educate others. Maybe you will save a life.