There is More Than One Path to Living Well With Migraine
After presenting my winning entry to the “Migraine Moment” short film contest at the American Headache Society and American Migraine Foundation’s 58th Annual Scientific Meeting, I had the fantastic opportunity to stand around and chat with some leading migraine specialists and advocates. One of them noted that I was “high functioning” despite being disabled frequently due to migraine. He wondered aloud what the formula might be that ensures this ability to thrive with migraine. What underlying factors allow a person to live with frequent/severe/chronic migraine and be high functioning?
This question stirred many thoughts for me.
First, I was proud of myself. Of course it hadn’t been easy for me to hold down a part time teaching job, freelancing on the side while spending a couple of nights a week in debilitating pain followed by fatigue-ridden recovery periods. I know a great deal of my “high functioning” has to do with strength and perseverance, and probably a touch of stubbornness.
Next, I was grateful. I had just spoken about how my ability to find strength and persevere has everything to do with my privilege: having the support of friends and family; my socioeconomic standing; access to integrative healthcare; being a beneficiary of the migraine advocacy work that has come before me.
Then, I tried to make up calculations in my head…
Financial privilege + access to care + emotional openness/connectedness = thriving with migraine?
Community of support + willingness/ability to change habits + union job + pharmaceuticals = thriving with migraine?
Access to care + mindfulness + family support + history of mental stability + cuddling with cats = thriving with migraine?
But even during that fleeting conversation, I was skeptical that there could be any kind of magic formula or combination of underlying factors to determine who might be “high functioning” while living migraine, because my own path to becoming "high functioning" was so windy and unpredictable. And it has been so different from the paths of others around me with migraine or chronic pain who are also managing to successfully juggle jobs, families, social lives, and their own mental health. From treatment plan options to daily habits to coping mechanisms, we are all just so different.
I also know that, beyond my privilege and all the supports it affords me, my progress is largely a fluke. If my neurochemical soup had a different make-up; if my mental health was less reliable; if my bike accident had been compounded with another traumatic event; if I had a previous history of chronic pain; if, if, if… then I might not be where I am today. I might still be severely disabled, because that’s how life goes sometimes despite our best efforts.
I think Lindy West says it best in her excellent new book “Shrill: Notes From a Loud Woman”…
“Every human being is a wet, gassy katamari of triumphs, traumas, scars, coping mechanisms, parental baggage […] Everyone is different, and advice is a game of chance. What would what changed me change you? How do I know how I changed anyway?”
While I find it endlessly useful to connect with others who have similar challenges, I pledge to refrain from ever assuming that my choices, treatment plan, or strategies will be best for another person, or that what has worked for them will also work for me. We all come to this disease with a unique set of challenges, and so many of our needs will almost certainly be divergent as well.
There are probably as many paths to living well (or as well as possible) with migraine as there are people living with migraine, and I’m so glad that this community exists so we can gently help each other to find the next stepping stones.
Have you taken our Migraine In America Survey yet?