My name is Alex.
I was diagnosed with migraine probably some time when I was in Middle school. I’ve had symptoms since Elementary School. That’s me, up there, every year on my birthday since my senior year of high school (migraine not pictured despite being in every photo.)
The hardest parts of my journey exists as I was preparing to walk across the stage for my high school graduation and unfold as I entered college, and subsequently became disabled by the disease and left both my education and the start of my career.
Various doctors have explained numerous times that migraine often pops up during puberty and adolescence, discussions ensue about causes and often land on changing hormones.
I was offered birth control as one of my very first means of managing migraine.
I loved my birth control because I would go on to totally forget what having a period was like. But it never had an impact on migraine.
Fast forward to the summer of 2017. This is technically when my disease burden reached disability level, though I would not recognize it for almost another year.
I worked in the Dean’s of Architecture, Art’s and Humanities office, I had been hired on full time for the summer previously having been a work study student. My main job was to deliver interoffice mail across campus, which during the hot months of summer where it would often be well over 100 I tried to consolidate deliveries to the early mornings where much of my walk would be shaded.
This left me with many hours to fill and find a way to keep myself busy.
Summer is often a slow time on a college campus, which provided me with a rather gentle job to do as my migraines seemingly got worse and worse.
I would spend many afternoons browsing the internet. I would read as much as I could about migraine. Eventually I would become incredibly familiar with different medications that had been used, the difference between preventative treatment and abortive treatment. I became familiar with the theories as to what caused migraine – was it a blood vessel disease or was it more related to epilepsy.
I did not have any community, nor did I know how to find one.
There were dozens of forums, but no amount of research and trying to figure out the search terms led me to actual people.
It wasn’t until a year later when I would start writing for myself that the world of bloggers and websites specifically made for community building for those with chronic illness began to open up to me.
And the thing is, I recognized that the world opened up to me when I started opening up to the world about my experience. I quickly saw how people around me were sometimes experiencing the exact same thing, that whether it was migraine or narcolepsy or PCOS or crohn’s disease everyone was hiding in plain sight and a lot of people weren’t connecting and finding community either.
I am now 23 years old. I have moved in and out of communities that have positively served me and met me where I was and I have a wonderful community around me now.
But as we enter into another Migraine and Headache Awareness Month, the community of folks with migraine that I know, know that yet again this month isn’t for us.
Today, and going forward I really want to highlight the youth and young adult perspective and experience with migraine because we simply are not being represented.
Stories about our experience are few and far between and we are all but excluded from advocacy conversations.
We enter into these spaces and most of the people around us could be our parents. They have 20, 30, heck 50 years on us and they have no problem letting us know. Since the moment I entered spaces on twitter that revolve around chronic illness and disability, and more specifically migraine, I am constantly met with the reminder that everyone I am talking to have been dealing with migraine for decades.
I have also been dealing with migraine for decades.
But this fact does not matter and our age is routinely used as a way to make us quiet down. We did not experience a time when the only medication available was triptans. We did not experience decades worth of no new treatments. Or a time when the internet wasn’t around so we couldn’t connect and find other people or other stories to feel represented.
We are not the most qualified voice in the room to talk about migraine disease and the only reason that is cited is our age.
We are naïve and young and we should leave the work up to the adults.
But this is a fallacy.
Because what does it mean when we “leave the work up to the adults” when I am 23, on disability, have tried all the therapies and medications available to me, have changed my entire lifestyle, and so on?
It means that we have a lot of conversations about parenting.
We have a lot of conversations about spousal relationships. There’s lots of resources about how to communicate with family (your husband and kids) about experiencing a migraine attack and the support you might need during this time.
We have a lot of information about the resources you have access to as a middle class, married women in terms of insurance and how to navigate it.
We have a lot of invitations to attend events full of middle aged, middle class women who can fund runs and conferences and continue to talk about parenting and supportive husbands and how to manage your kids during that attack. How to still take that family vacation and plan for your migraine attack.
Migraine advocacy operates under the assumption that we’re parents who are old enough to have held various jobs that afford us experience levels to talk about work from home alternatives, because we’ve already graduated from college a long time ago, and we’ve already been through the whole “dating in your twenties” and you’ve probably settled into your long term relationship.
Those are a lot of assumptions.
And they exclude most people.
Anyone Black. Anyone Indigenous. Anyone with other disabilities. Anyone who lives in poverty. Anyone who dropped out of high school or college because of their health. Anyone in college. Men. People who aren’t looking to start a family. Partnered people who don’t plan on having kids. Kids. Anyone in rural areas with limited health care.
The list goes on and on.
So this Migraine and Headache Awareness Month, I am kicking off a new blog series that will be focusing in on high school and college and into the young adult experience.
I want to tell my story in more detail than I’ve told it before. I want to feature other people’s stories.
Because right now, what we have isn’t representing us and isn’t answering the pressing questions so many of us have.
We are young, we are sick, our disease burdens differ greatly, but no one is giving us practical and accessible advice or guidance for how to move forward with starting our lives with migraine disease potentially threatening to stop us in our tracks.
One of the things we need the most is other people’s stories.
I look at my friends and I write this for them. I write this for the next person who has to convince their parents they need to go back to sleep and miss first period so their new meds can actually kick in. I write this for the person who is beating themselves up because they haven’t figured out a way to accommodate their brain fog and almost double dosed on their medication, because I did double dose and then overdosed in my physics lecture hall. I write this for the person who feels absolutely helpless in their dorm room and can’t seem to make any friends because migraine is making them behave in a way that preserves their health over other people’s idea of a good time.
And most importantly, I am writing this for the still very much in high school or middle school folks who are having migraines and headaches begin to sneak up on them. Who are canceling plans occasionally. Who are having a hard time focusing in class.
I write this for the people reaching out to organizations trying to participate in events geared at youth only to discover that the “experts” are very far removed from youth.
I write this for the leaders too. Because we deserve better, and when you direct your questions about “where is our advocacy not reaching enough people like other diseases do” and I tell you directly that you need to listen to younger people with the disease who are full of ideas and are ready to join the fight and you ignore me and anyone else who dares to highlight who is being excluded, I write this for you, so that you can see that this awareness will be coming regardless of if you attach yourself to it or not.
This conversation has been brewing, and I invite you to see some of the beginning over on my Patreon where I discuss a Miles for Migraine Youth Event in April:
It’s time we do better by our youth. It’s time we let folks under 30 participate and hold meaningful space within the migraine community without constantly facing dismissal because of presumed lack of awareness.
And this will not be limited to June.
I’ve been looking for a way to meaningfully use my platform and this space I’ve created and as I see this large gap, I have decided it’s time to tell these stories. To create the space for them to exist and reach other young adults. To connect with people who can relate or need to know how to navigate spaces once they get their.
You cannot silence my generation by ignoring us, we aren’t going anywhere.
So in the coming month – and months beyond – I’m going to be covering a lot, and hopefully including more voices than mine, to talk about things like dorm life, school accommodations, recognizing ableism from teachers and how it can change the trajectory of your high school and college career, how you can manage migraine while you’re in high school but also have to work, overdosing with no support from adults and how I made it through that day with the help from other students, changing your lifestyle with practical means like actually learning every process of grocery shopping to meal prepping, entering the workforce for the first time, and making friends and finding community when your life is just so much different than other people’s in the same age group because you can’t simply ignore your health and those needs.
And I hope to feature stories that touch on ableism in higher academia, returning to school after withdrawing, navigating the dating world, and any other topics that you may go beyond my own scope but need to be showcased.
Of course, drop a comment below if a subject stands out to you that I haven’t mentioned!
If this next chapter and specific sub-topic interest you, I invite you to help support me on this new endeavor and journey – if you are financially able.
You can also support me by checking out my amazon wishlist which is full of “luxury” items that would make my disabled life a little more comfortable.