What I Realized When I Was Asked About My ‘Migraine Story’

Between the Migraine World Summit winding down, and my 18-week lifestyle program kicking off in less than a month (at the time of writing), I found myself in the middle of a serious reflection period.

Yesterday, I fired my doctor (well, my mom fired her on my behalf) and shockingly, I see my new doctor’s physicians assistant today. Never, have I ever, in healthcare experienced such a fast turnaround. Ever.

But, with a new doctor comes an intake visit. I shook my head and realized, “wow — might as well throw out everything else I had planned for today and use the relief my medication is providing me with to prep for my doctors visit. So, I printed out medical records, I printed out migraine buddy charts, I made my “migraine history” and “medical history” timeline…

Twenty minutes. It only took me 20 minutes.

Prepping for an appointment used to take sometimes half a day. So, that’s progress. 

And so, prior to jumping in on this 18-week lifestyle program, there’s some journal prompts to really get me thinking and recognizing things within my journey. So, I took the unexpected extra time to start. The first prompt: What is my migraine story?

And I have got to say, that’s a really good question — it isn’t the 20 minutes of prep work I laid out for my doctor’s appointment.

My migraine story is a bit like a speed bump, but it’s really just a preface to what is to come. My story isn’t the outline of my symptoms or how my need for a vision test in fifth grade escalated to a slow progression of a neurological disorder, and then the final chapter being “giving in” and giving up my dreams. 

My story is one of fortitude. It’s strength. It’s courage. It’s about understanding my path and taking things I’ve learned along the way to reinvent myself and truly be the best version of me possible. It’s about change. It’s about friends I’ve met along the way. It’s about using my experience to change people’s perspectives, to be a person people want to come to for advice, for being a voice for those who aren’t ready or haven’t had the opportunity to share their story. 

My story is everyone else’s story and it is much more vast than simply struggling with migraine and managing my symptoms.

And that’s what I wrote in response to the question in the space I set aside in my journal.

But it makes me wonder; a year ago, that wasn’t anything close to my story. A year ago, if you’d asked me to share my story, you’d get the same timeline I present to medical professionals. That is a really bleak outlook.

And, I think this program will have a lot to do with shifting my perspective. I know there’s a question later on that has to do with “what I want my story to be” and at the moment, I don’t think my answer is any different.

You see, my “migraine story” isn’t a story about migraines at all… I mean yes, of course it is, but it’s so much bigger.

It’s about the new opportunities. The new what ifs. It’s that moment in time after I moved home, when I was hopeful medication would give me my life back. I spent hours on end researching what I’d need to be a rocket scientist, which led to an interest in astrophysics or maybe volcanology — two subjects that have intrigued me for most of my life. Two new, totally different paths that could be feasible if I was back at the health level I was striving for.

I can tell you I most certainly have no interest in the years and years of schooling either path requires. But, I was led down the idea of mortuary science because hey, “dead people can’t talk back” and because it would be a career that would provide stability no matter where I went and would have some level of flexibility.

But, when it comes down to it, right now the thing I am good at and most passionate about is my writing. Maybe that means I should finish an online degree in English. Maybe it means I should pursue some of the offers I’ve received for various writing opportunities.

The point is, that’s a far cry from the architect or interior designer I was striving to be. But, the high school freshman version of myself who planned out her whole “high school planning seminar” to fit into going to college for journalism is grinning ear-to-ear. 

My English-loving, book-hoarding mom is also grinning ear to ear.

If we really want to talk about my migraine story, it is quite literally a story. It is “My Life My Migraine.” 

But, it isn’t just my story.

It’s all of yours. Every person who’s ever read a single line. Every person who has shared their story either to contribute to a more complex piece or because they were looking for someone who would listen without casting judgment. 

The community I have built around myself is ever-changing, but I am so thankful for it. I never feel truly alone. Every week, I encounter someone new — or someone old — sharing how much these diary entries have touched them, or how it resonated even though they struggle with a different condition. Or maybe they don’t at all, but their lived experience has mirrored a part of mine. When y’all share your stories with me and entrust me with things no one else knows, it makes every second of my life matter more and more.

The most powerful thing I’ve encountered is when people are having the first opportunity to really share their story. That brings me to tears every single time because we should be asking about people’s stories. We should want to know their journeys. Their hardships. Why they are who they are. Everyone deserves a place to have their voice heard. 

My story extends so much deeper. 

It’s a bridge I built word by word to make things easier to understand. It’s the raw emotion of recognizing the freight train of emotions and thoughts that run through my mind when I’m stuck, unable to do much of anything.

It’s the explanations of how all of our perspectives can change. How we view the advice we give and take. How we understand the sensory implications of migraine. It’s taking my personal experience and putting it out in the open for the whole world to see because you could never grasp the full picture from a picture.

 And, I guess that’s where my “story” doesn’t really differ from what it would have been a year ago. Because that story was about the black and white perceptions about migraines and using my words to fill in the grey space that isn’t talked about. It was about finding new ways to describe exactly what I’m feeling that isn’t medical terminology and isn’t “spoonie” talk. It’s metaphors to things we’ve all experienced in some capacity. And that part certainly hasn’t changed.

My story isn’t a speed bump like I wrote down and like many other’s perceive.

It’s a bridge.