It is more blessed to give
Sometimes I take my migraine knowledge for granted. Not too many years ago, I was the one searching for answers. In a random twist of fate, I stumbled into the path of a patient advocate who gave me just what I needed. Those early nudges in the right direction set me on a course toward effective migraine management and a passion for sharing what I learned with others.
In the past month, three strangers have reached out for help just like I did over eight years ago. Each woman had lots of practical experience dealing with migraine yet lacked critical information important to her situation. Their search for help led them to someone who could provide the missing pieces and offer additional tips to guide them on their migraine journey.
A red box with a white number 1 appeared next to the Messages link on my Facebook page. I clicked it and began to read the story of a mother desperate to help her teenage son with chronic migraine. She needed help understanding her son’s educational rights before the next 504 Plan meeting. We exchanged a few brief comments and then agreed to a phone call. We spent over an hour one evening going over the intricacies of educational and disability law as well as some basics on migraine management. She still keeps me updated on her son’s health and educational progress.
A few days later, I receive both a text and a Facebook message from one of my best friends. Her mother-in-law had suddenly started getting frequent migraines after years in remission. She asked me to reach out and offer my support. We compared the differences between current migraine treatment and the treatment she recalled from many years ago. Fortunately I was able to send her the names of several board-certified headache specialists within driving distance of her home. Much of our conversation involved a discussion of lifestyle factors that could be triggering her migraine relapse.
About a week later, another woman left me a private message, asking to chat because she felt “stuck” in her progress. We discussed the need for (and the differences among) acute, rescue, and preventive migraine treatments. We also explored trigger identification and that ever-elusive search for the perfect headache specialist. Every migraineur deserves to know this basic information. The real tragedy is that very few ever find out. Unless you receive care at a specialty headache clinic staffed by headache specialists, migraine patient education is relatively poor. We must rely on our own research and the kindness of volunteer advocates to obtain the information we need.
I’m not sure who benefitted more.
Sure, each woman received helpful information to address her concerns about migraine. Yet I can’t help thinking that I got the better end of that deal. I now have three new friends. This disease brought together strangers from different places who might otherwise never have met. It’s not the first time either. My life is so much richer for the many friends who understand migraine’s challenges. We pick each other’s brains for ideas, make room for pity parties and angry rants, celebrate every little success, and share in each other’s lives. While migraine may have brought us together, it doesn’t dominate our friendships. Although most of us have never met, we’ve shared so much – weddings, new babies, hobbies, new houses, wrecked cars, bitter breakups, job losses, the making of new careers, the death of loved ones, graduations, dance recitals, birthday parties…everything about our lives is shared.
It took a personal tragedy for me to find the thing I was meant to do. Now, every day I get to talk to people like you about migraine and empower them to change their lives for the better. In exchange, I receive the gift of friendship that goes far beyond whatever migraine tries to take away. Thank you all so much!
Have you taken our Migraine In America Survey yet?