you don’t realize how many people are fighting chronic conditions until you deal with one yourself.
You just woke up for class. You’re showered, getting ready, and feeling up for the day, then suddenly—there’s a blind spot in your vision, you’re dizzy, your head is pounding, you need to lie down. Immediately. Thirty seconds ago, you were ready to tackle the day, see your friends, get some work done, maybe go for a walk. Now, you’re doomed to your bed for the next four hours. At least. If you wear sunglasses, you might be able to read a book for about fifteen minutes. Maybe.
Welcome to chronic migraine-hood! I’ve been dealing with chronic migraine symptoms for about five years. I’ve been coming to terms with this fact for the last year or so, as I thought I was just lazy and tired. There’s been a tug-of-war in my head in terms of its legitimacy—I thought everyone dealt with this. I was wrong.
According to the American Migraine Foundation, less than 3-5% of the population deal with this issue, an estimation of about 148 million people. In the Global Burden of Disease Study in 2019, migraine “remains second among the world’s causes of disability, and first among young women.” As a young woman, imagine my surprise at the last half of that statistic. Reading it felt like it was my destiny to just…deal with it. Like it’s a prophecy to be fulfilled.
This diagnosis is a new presence in my life still, so I thought I’d share some of my experiences and wise, wise advice with you all.
Coping
At some point, you have to look at yourself in the mirror and acknowledge the pain that you’re in. I spent too long walking around with an ice pack taped to my head to feel any shame. Accepting this condition opens the door for us to explore options for help.
Finding accounts for chronic pain havers and fellow migraine sufferers is hugely beneficial in this process. I have found solace and felt seen by organizations like the Association of Migraine Disorders and their Shades for Migraine campaign. Social media accounts like @chronicpaininyour20s and @chronicloveclub on Instagram detail normal women like myself dealing with this debilitating issue effectively.
My mission is to let other people who may also be lying in a dark room alone know they aren’t alone. I believe there is so much power in sharing knowledge, especially on something as invisible as migraine.”
Liv, @chronicpaininyour20s
“I created this account after coming across other people living with migraine online. They made a profound impact on my acceptance,” Liv, admin of @chronicpaininyour20s, said to me, “and I wanted to pass that on to someone else. My mission is to let other people who may also be lying in a dark room alone know they aren’t alone. I believe there is so much power in sharing knowledge, especially on something as invisible as migraine.”
Social Situations
This was, perhaps, the hardest element to figure out (even including the debilitating physical pain). I didn’t know what to tell my friends and felt like I would isolate myself from them regardless of what I said. I worried that no one would want to hang out with me because of my limited capacity. I can’t go out at night, listen to loud music, or move a bunch, as I am still figuring out and managing my triggers.
I’ve become honest and open about my migraines with my friends because I decided that I cared more about my relationships with them than the neurological being inside my head deciding my every move. I didn’t want them to think I was avoiding them on purpose, or that laziness was getting the better of me; I needed them to have the full picture of what was going on. I was scared of being judged, and when you have this pain, you can’t be managed by fear. When fear gets the best of you, you never leave your bed.
Treatment
I could go on a thousand-word rampage about the state of our medical system, but I won’t for the sake of readers everywhere. Getting treatment for chronic migraine is one of the hardest things I’ve ever done, and it’s still the beginning of the process.
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I’m on some medications that help manage the symptoms but they don’t go away. Getting past the phone tag and finding a doctor is one thing, but getting the doctor to believe you and create a real, actionable plan with you is another thing entirely. I haven’t fully passed either of these steps yet. I have, if you will, concepts of a plan, but I’ve called about eight neurologists and almost none of them can get me in within a year.
Self-Care
When all of these things are happening to you, you have no choice but to fend for yourself to an extent. Thus, I’ve created my Migraine Kit: a cat-patterned bag. Within the bag, there is a Snoopy-themed pill case, including naproxen sodium and my prescription medications. I make sure to have sunglasses, Loop earplugs, a roll-on of arnica, and lavender oil (for those desperate times when aromatherapy is the last resort) on me. Check out my migraine kit Amazon list for my top recs.
Regardless of what products you have, self-care is extremely important because migraine is a neurological condition. No one’s totally sure how it works, but it’s critical to take care of yourself; drink enough water, eat proper meals, and get a good night’s sleep. An absence of any of those may become a trigger.
Migraine is an insane chronic condition to have, and it’s a constant rollercoaster. No one knows how to cure it, which is one of the scariest parts. We hope we outgrow it, we try to nurture it, but it doesn’t go away. Here’s to all of the folks out there who deal with this—being functional people in this society, with this condition, is a crazy sign of strength.