Migraine can be a rough disease to live with and learn to manage. One that can easily leave any of us feeling emotionally and socially isolated. It can also leave us feeling void of information other than what our doctors may provide, in the often limited timeframe we have to consult with them. That is why building a sense of community is so important, even though for some us initially it may feel like a daunting task. I can finally say that the migraine community has become an important part of my life, but it has been quite a journey. For many of you the pressing question may be: How do I even begin to get connected?
Migraine Events Opened My Eyes
After having chronic migraine for many years, I started to want my migraine pain to have meaning. I was yearning to become part of a migraine community. I wanted to be with people who literally shared my pain and understood it. I wanted to make a difference beyond my own walls. The very first thing I ever did was put a lightbulb in my lamp post in June as part of the Shine-A-Light campaign during Migraine & Headache Awareness Month. When two different people asked me about the significance of that purple lightbulb I was so excited to share information with them! I then started looking for one day events. Whether that was a patient symposium, education event or walk-a-thon, it opened my eyes. It started to make me realize there were others in the local community I had never met who had my diagnosis and who lived with the same disease I had.
A Partnership With My Doctor?
Like many of us, I too have struggled to find a doctor who will partner with me. For some, that may even be a novel idea – a partnership! Honestly, working with a healthcare professional who you feel “gets it” can be an important part of your migraine community as well as helping build it. I wanted someone to work with to help me be the best version of myself possible with the current therapies. My current headache specialist is knowledgeable in therapies both old and new. This gives me a sense of calm when medications are suggested, even though I ultimately must decide whether or not to take them. While he brings his expertise to the table, my thoughts about my headache logs or how a particular therapy is working is heard and plays a role in the next step for my treatment. It is also thanks to my doctor that as I looked for new ways to expand my migraine community, a casual conversation with him made me come to the realization that the migraine community was very much alive on social media as well.
As I began to explore social media, my migraine community started to grow beyond one-time events. For the first time, through migraine advocates’ blogs I was starting to meet people whose words reached into my innermost core. The emotions and experiences of which they were speaking had a lot of commonalities to things in my everyday migraine life. It was not just me who felt overwhelmed by raising my children while I had migraine. I was not the only one frustrated by the inability to make others understand this was more than just a headache. There were others struggling with the disappointment at losing friends because of the need to cancel plans again and again. Blogs started writing about upcoming therapies I had been following as I eagerly waited for them to come to market. This gave me other perspectives besides my own and my doctor’s as I waited to try these new medicines.
Discovering a Community on Facebook
With the realization that people were out there talking about migraine, I turned to Facebook as well. This allowed my migraine community to flourish. I discovered a place where I could talk about my experiences and emotions about migraine with others. Finally, I could share with others who suffered from the same disease without fear of judgment. It became a place to go to with people who lent an ear. There were suggestions about situations being experienced on my migraine journey. It also became a place to go to and become a support for someone else. An opportunity to share the wisdom gained through my journey with others that hopefully could make their path a little easier.
What I discovered was that we are here to build each other up. To help provide hope to others on a day that may seem too dark to go it alone. I discovered invaluable information both on current medications as well as new therapies that were coming to market. And not only information, but a place to come and discuss these treatments in real-time use and gain support and feedback. I discovered a space where we learn from each other and a forum where we can express hope or worry about a treatment that is new to us. I was more easily able to stay current in new therapies that are still emerging, and that allows me to help others as well as myself as I head back to my own doctor’s office.
If you feel alone, know that you are not. If you feel misunderstood, know there are many of us that get you. Together we are all here for each other. Together we are the migraine community. Together we will continue to stand and face tomorrow.