This is the first in a two part personal series chronicling how to become an advocate for your own self care when dealing with chronic migraines.
It was my birthday, my 28th birthday to be exact. I wore a bright red dress because once I commit to an unnecessary idea (going somewhere fancy for my birthday so I can dress up) I go all the way. If you looked at me, you wouldn’t have known that anything was wrong. I walked briskly, impatiently and slightly in agony through the CBD towards the French restaurant hidden in a laneway. I would be the first to arrive in a small, intimate booth and I would wait there with the face of Monica Bellucci in Malena as she whips out a cigarette and all the men rush to light it, but instead of a cigarette, I’m about to pop the painkillers and they’re passing me water.
As I wait for my six guests, I only have one thought: how can I get through the next three hours without vomiting and passing out?
Hi my name is Sheree and I’ve had migraines for a decade and chronic migraines for two years. I survived my own birthday by falling into a fugue state and living through an alternate reality where I was actually a French countess or something. I gritted my teeth, I employed the occasional head in hand manoeuvre, coupled with one eye closed during the main course, and periodically holding a cold martini to my head. I can do this, I can get through this beautiful dinner. I won’t let these friends down.
And before I knew it, it was over. Relief flooded through me. I’d be home soon. OR WOULD I? *dramatic music*
People who couldn’t make the dinner, desperately wanted to meet us for drinks. My heart fell to my gut which was now the epicentre for all things nausea related. I knew that I couldn’t go but also that I had to go and felt myself being pulled into two opposite directions like a piece of kneaded play-doh that quickly rips in two and the sentient piece continues in the direction towards the CBD bar full of corporate suits.
I followed everyone with great difficulty, eyes closed, feeling my way down grimy George Street. I immediately proceeded to hide in the corner, clutching my head. One of my friends, who hadn’t been at the dinner and didn’t know I had a migraine, walked past and offered to buy me a birthday drink. I openly flinched at the idea, regretting previous martinis back when I believed I had no choice but to drink so I could order another cold one for my head. I said no a little too loudly. He laughed unperturbed and jived off towards the bar. Everyone was having a good time, except for crouching tiger, hidden migraine standing in the corner like a loser.
My best friend Sophie, like a good best friend is wont to do, pulled me aside to ask if I was okay. I said I wasn’t and I just wasn’t sure what else to do. The migraines were increasingly beginning on Fridays and would last for an entire weekend, meaning I had already become an anti-social shut-in and just coming out at all was a small miracle (the “weekend migraine” is a thing). Most of all, I felt sad that I would look back on what should have been a delightful memory and instead cringe endlessly (it’s true I’m doing that right now).
And then Sophie said some words that changed how I looked at my condition.
“You have a chronic health problem, you’re allowed to take time out to figure out how to deal with it in a way that works best for you.”
It was the first time I’d heard someone call it a chronic health problem, even though it’s something that I’ve suffered with for a decade. When you hear the words “chronic health problem” you think of people who are forced to live with serious, life-threatening illnesses, bedridden or chained to their homes. You think of something constant and enduring. But actually chronic health pain can come in all forms, and many people can be highly functional in the face of great pain. It is a constant hum you stop hearing, but something that can so casually run an endurance marathon across your life.
It’s true that when my migraines went from being occasional to frequent, they changed who I was fundamentally. I became reclusive and struggled with basic attempts at socialising. I lost my confidence. I struggled with basic stressful situations at work and constantly dealt with the dilemma of taking a day off when I’m the sole person who runs The Vocal. My appearance changed drastically thanks to dangerous drugs that didn’t work and which when mentioned to experts, openly flinched at the idea of taking them for migraine prevention. Most of all I developed a debilitating and constant anxiety that an attack was always imminent.
— Sheree Joseph (@tinyfleu) March 26, 2016
But perhaps the worst part of the ordeal was discovering the stigma associated with migraine, particularly for women. I hadn’t noticed it as much before because I was less vocal about my condition. But speaking up led to hearing other similar stories and realising I was so far from being alone in this. It also led to the most frustrating thing you can experience with this condition – everyone migraine-splaining your condition back to you with a series of “solutions” because they had a headache “that one time in their life” and found relief with X strategy that they assume you don’t know about and are willingly avoiding for some reason.
Research into why particular people suffer particular strands of migraine is limited. Although they might know how it works, they don’t necessarily know why and how to deal with them long term. As a result, a lot of treatments are trial and error. You’re usually given ways to deal with the pain and the end result, rather than prevent them for the long term. Even less is known when it comes to migraine affecting women, even though women are more prone to suffering from migraine than men.
Generally, nobody wants to wade into murky, unanswerable areas, so they stick with tried and tested methods and what they do know, which is often limited depending on their profession and field of interest.
The problem and main barrier is that few people and few doctors take the condition seriously. And why would they? Unless you’ve suffered from migraines, it’s probably hard to imagine how bad they can get. “Just a headache” is something GPs commonly say before prescribing you some, erm, Panadol. They may as well just hand out candy because I love candy and that would at least brighten my mood.
Now, full disclaimer: a lot of this is based on my personal observations as someone who has experienced this ordeal for a long time and from what I’ve learnt along the way. But the more research I did myself, the more I discovered there was a whole wealth of knowledge on this issue I had never read before, because I didn’t know to look for it.
This is because I had never heard about headache specialists until this year.
If headache doctors – board-certified headache specialists – is a new concept to you, well there’s a good reason for it. Most migraine sufferers have only ever seen a GP or a neurologist or maybe a gynaecologist. The huge issue here is that many doctors have studied migraine so little and this is how they can further perpetuate the migraine stigma and trivialise the disease. And headache doctors actually experience the same migraine stigma that patients experience.
This is the stigma checklist for those playing at home:
- Have you ever felt misunderstood because of your migraines?
- Have you ever been told to “take an Advil” to get through the work day?
- Or made to feel guilty for cancelling plans because of illness?
The physicians who dedicate their careers to migraine and headache disorders spend years studying migraine disease and work exclusively with headache patients. As the article explains,
“Neurologists, doctors who specialise in the brain and nervous system, are often not well-versed in migraine, either. On average, doctors only receive four hours of instruction about all headache disorders in undergraduate education. That is not nearly enough.”
“It is no wonder so many patients leave doctors’ offices feeling confused or bogged down by misinformation. Managing migraine disease is tricky. It involves looking at multiple areas of a person’s life, including genetic history, lifestyle choices, diet and sleep habits, and exercise patterns. Without training and education, the patient-physician partnership cannot do what is needed to manage migraines.
This lack of education can also add to some of the migraine stigma that both patients and headache doctors feel at the hands of other professionals. Some doctors see migraine as something of a mystery, making them less-inclined (and less able) to tackle the problem. That’s just one reason being an advocate for your own migraine care is so essential.
Headache specialists understand that migraine disease is a genetic, neurological condition affecting all areas of a person’s life. Other doctors, however, may not. Dr. Dodick explains the situation this way:
“Healthcare providers have gone into the profession to help people, and they want to help people. But if you are not trained in the disorder that the patients come in to see you for, you feel unequipped to manage that person. Plus add to that the historical stigma attached to migraine and those who suffer, and it’s a double whammy.”
So with all this in mind, how do you go about finding a treatment that works for you? In the second part I explain how I turned things around and eventually got the migraines under control.