The following piece discusses personal experience of chronic migraine syndrome. If you or anyone you know is experiencing migraines, we recommend contacting your doctor.
This week is Headache Australia’s Migraine Awareness Week.
Studies have shown that over 4.9 million Australians are affected by migraines.
Migraine is a common neurological disorder. It is typically a one-sided throbbing headache that is accompanied by nausea and vomiting, sensitivity to light, sound and smell. In women, the symptoms tend to be more severe, longer lasting and affected by hormones.
To mark Migraine Awareness Week, we invited Melbourne-based editor & writer Kate Glenister to write a piece about her personal experience living with chronic migraines.
Probably the most common question people ask me when they find out I have chronic migraine syndrome is, “what does it feel like?” I’ve discovered that it’s impossible to explain the feeling to someone who doesn’t get them. That’s one of the many ways that migraine is an extraordinarily isolating condition. When you have one, there’s simply no way to be amongst people. The intense pain, mixed in with the nausea, and the light and noise sensitivity means that even a caring whisper of “can I do anything to help?” can reverberate through your head like a freight train.
So, when my neurologist told me there’s a strong correlation between depression and migraines, I wasn’t surprised. I’ve been depressed on and off since I was a teenager and a migraine sufferer since I was 12. It’s easy to feel depressed when you spend a lot of your time lying in the dark, consumed by pain, with no stimulation but your inner monologue. Then when the pain goes away, you spend a day or two skulking around, getting over it (I like to call this the hangover stage). I’m not trying to make it sound all doom and gloom – I think the reality is that migraines are just a bit gloomy.
Of course, I do have a highlight reel of migraine stories. The ones that are so unfortunate and poorly-timed that the story of them might be funny if someone else was telling it to me: like the time I tripped down an escalator, broke my ankle and then woke up with a migraine the next day. Or the way my daily preventatives make my fingers tingle and my hand go numb when I’m holding hands with someone, which a boyfriend once jokingly described “like holding a dead fish.” Or the time I got my hair done ahead of my undergrad graduation so that I could walk the stage looking my best, and the hair appointment triggered such a bad migraine I was in bed for three days and missed the ceremony.
I guess on reflection, they’re not funny stories, are they? If I were telling you them in person, I’d be chipper and the smile would be slipping off of your face. That’s generally how it goes: I’m upbeat and matter-of-fact when I talk about my migraines, because I don’t want people to feel sorry for me. These are the kind of stories I regale my co-workers with when I walk back into the office after a day or two away in bed with a migraine. I’m lucky at work. Every time I call in sick, or have to work from home, it’s met with a “feel better soon” or “sorry to hear it.” But the anxious part of my brain always clocks it as passive aggressive, like they’re disappointed in me. They’re not, but it makes me feel small nevertheless. Anxiety is another big player for me. When I’m not having a migraine, I’m constantly worried about when the next one might strike, or if I have enough medication on hand, or if I have enough sick leave to take a day off work when one inevitably hits.
I’ve had jobs in the past where people have treated a day off for a migraine as synonymous with me chucking a sickie. According to the 2019 Nurofen #MYgraine Report, over 25% of people think that migraines are the perfect excuse to not turn up to work. I find that to be astounding. It’s not a convenient excuse to lounge around at home and watch Netflix. Waking up with a migraine is a sentence to stay in bed all day with the curtains drawn and a sign on your door that says ‘Got migraine: please don’t make any noise.’
It’s not just days off work, either. I’ve missed parties, friends who are only in town for one day, sold out concerts that I’ve bought tickets to months in advance. I’ve missed exams and flights and appointments. I’ve had migraines on my birthday, on Christmas, in cities on the other side of the world that I might never get the chance to visit again. Your migraine doesn’t care if you have plans, or if you do everything you humanly can to avoid it: if it wants to happen, it happens.
I’d be lying if I said I didn’t sometimes feel defined by them, and defeated by them. But I also have a wonderful family, including a mother who has spent countless nights in the emergency room with me (including one night just last week – thanks mum!). I have a brilliant army of supportive friends who have picked up prescriptions for me when I couldn’t do it myself. I have a bourgeoning career in publishing with a prestigious global company, and a team who really care when I’m unwell. But I also have chronic migraine syndrome – the migraines that I hate, that I take with me everywhere I go. Every single time I leave the house, I take with me a small arsenal of pills (known colloquially to my friends as my travelling pharmacy) in case a migraine strikes. Every place I go, I have an escape plan. Every night I go to sleep with my head on the pillow and wonder: will I have a migraine tomorrow?
There’s a question I ask myself often: how much time have I lost to my migraines? How many days of my life have been spent in a dark room, isolated, medicated, in pain. If you totalled it all up, does it add up to months? Is it years? I don’t really want to know the answer. It would break my heart in a very unique way. On many occasions, I have felt robbed by them. I have looked at my friends and wondered, ‘why me?’ But it has made me a more compassionate person: it helps me understand that everyone has something they’re dealing with, whether it’s visible or not.
If I had to give advice to a fellow sufferer, I would tell them to accept it. There’s no known cure – you will probably always be a migraine sufferer. It took until I was well into my twenties to accept that fact: I have a chronic disease, an invisible illness, whatever you want to call it. I have something inside of me that restricts my ability to operate some days, and that will probably never change, so it’s up to me to manage it the best I can, and make the most of the good days.
My advice to non-sufferers would be a bit different. There’s an enormous gulf between the people who suffer migraines and the people who do not. I’d tell people who don’t suffer from migraine to imagine a feeling of being trapped inside of your own body, not knowing when it might turn against you and strike you down for a day, or two, or twelve. Now think of a time you’ve felt misunderstood; out of place, like you were too big for your own skin and you felt as if people wished you could be different. We know from the 2019 Nurofen #MYgraine report that 61.9% of Australians who identify as having migraine feel misunderstood, carrying these feelings with them everywhere they go.
This gap can only be bridged with empathy, and more willingness to listen to sufferers like myself. If I had to give advice to someone who has never had a migraine, I’d tell them to exercise their empathy muscle when it comes to dealing with those of us who do; for all of us to show empathy to each other, in any circumstance. Because good comes from being kind to each other, and who doesn’t want to do good?
To find out more about migraines, you can visit the Headache Australia website.
You can also join in the conversation on your own socials by using the hashtag #MYgraine.
The information in this blog is not a substitute for a medical opinion. If you or anyone you know are experiencing or have suspicions they have migraines, we recommend contacting your doctor.