Living with migraine

Chloe’s journey from childhood pain to advocacy

On Sunday evenings, as her father was closing church and saying goodbye to the congregation, she would often find herself curled up in the back seat of the family car, nauseous and in pain. “You’re always sick on a Sunday,” her father would say. Only years later did she realise those episodes were not childhood queasiness, but early signs of chronic migraine, triggered by the lights and audiovisuals.

What began in her early teens would shape the next two decades of her life — through confusion, dismissal, trial-and-error treatments, and eventually, the fight to advocate not just for herself but for millions of Australians living with migraine.

A misunderstood condition

By the time she reached her final years of high school, the headaches had become unbearable. She was studious, driven, and academically bright, but her health was slipping out of her control. “My mum would say, you’re taking a lot of Advil every day and it’s clearly not working. We need to see a doctor.”

At 18, she finally received a formal diagnosis of migraine, though answers remained elusive. Her GP network wasn’t sure what to do. Neurologists assessed for epilepsy and trialled various preventatives, but nothing stuck. During this time, she lost her first full time role as a result of the leave taken for the ongoing tests and prognosis. Over the next 10 years, she cycled through a cocktail of medications, with one constant: opioids.

“I’m surprised I was even able to function with the amount that was prescribed,” she recalls. “At one point I was taking over-the-counter codeine, plus preventatives that didn’t quite work. But there wasn’t much else offered.”

Misconceptions from others compounded the struggle. Colleagues and even doctors questioned whether she was “really” experiencing migraine. One workplace comment still stings: “Do you really have a migraine? Because my mum gets them once every six months, and she can’t leave the house and must be in a dark room.”

But her reality was different. She powered through pain daily, masking the severity of her condition just to keep her career and life moving forward.

A turning point

At 28, she reached a breaking point. Her neurologist in Sydney had begun trialling Botox as a treatment for migraine, and was among the first in Australia to offer it. But there was a condition: she would have to come off opioids and preventatives first.

The withdrawal was brutal. “My husband’s a police officer, and he described it as seeing someone come off heroin, I was so sick. I had to be sedated for about a month during the final detox, overall it took 3-months.”

Yet that agonising process became the gateway to a new life. The treatments gave her, for the first time in years, true pain-free days. She could finally tell the difference between a lingering headache and a genuine migraine attack.

Today, her treatment plan includes Botox every three months, a targeted medication she pays out-of-pocket for, and anti-inflammatories when needed. It’s not a cure but compared to the years lost to constant pain and opioids, it’s transformative.

“If you’d met me 10 years ago, I was a completely different person. Now I actually have days where I function really well, days I’d never thought possible.”

Living with migraine in daily life

Her health remains an ongoing negotiation. “It’s not over; hormones change, stress at work plays a role. My neurologist jokes that I should just quit my job, and I’d feel a thousand times better. But I love what I do.”

Instead, she’s learned to reshape her mindset. Migraine is no longer just an obstacle, but something she manages with boundaries and intentionality. After each Botox session, she takes two full days off. “I look forward to that time now, it’s my digital detox, my forced rest. I even joked to my boss, ‘You should get a chronic illness too!’”

That ability to carve out space has shifted her outlook. “There’s too much life to be lived to spend it worrying about the next attack. On my good days, I make them the best days.”

Still, she recognises her privilege. Accessing Botox, seeing bulk-billing neurologists, and affording specialised medication puts her in a position many Australians cannot reach. “That’s a big part of why I joined the board of Migraine Australia. It shouldn’t be this hard-to-get effective treatment. Too many people are still stuck, opioids are cheaper and easier to access, some can’t afford to see specialists, others aren’t aware of the new options available to them, although many may be unaffordable.”

The power of community

Before stepping into an advocacy role, she found comfort in the Migraine Australia community groups. “Sometimes you can feel gaslighted by society or even the health system, like maybe you’re imagining it. Reading those stories gave me perspective — I wasn’t alone. And it gave me gratitude too, for how far I’d come.”

The community provided practical advice and hope. “You see people trying new treatments, or celebrating small wins, and you can’t help but cheer with them. Migraine can be isolating, but that sense of belonging makes all the difference.”

Advice for the newly diagnosed

If there’s one message she wants to share with those beginning their migraine journey, it’s this: don’t settle for inadequate care.

“Get to a neurologist quickly. Find a GP who’s educated and willing to work with specialists. Track your migraines so you have evidence of what’s working and what isn’t. And don’t accept opioids as a long-term solution, they mask pain, but they don’t treat migraine.”

Self-advocacy, she says, is everything. “I wish I’d known what I know now in my early twenties. I lost too many weekends on the couch, doped up, instead of living life. No one else will fight for you like you can, but the more you know, the better you can fight.”

Looking ahead

Despite progress, she sees a long way to go. Research still focuses heavily on symptom management rather than underlying causes. Funding lags behind other chronic conditions like diabetes, despite migraine affecting over five million Australians.

“We need to get beyond Band-Aid fixes. Why does migraine present as neck pain? Why does it strike some people and not others? Until we understand the core drivers, we’re not really addressing the condition.”

That determination fuels her work with Migraine Australia. Even as she juggles her career and treatment, she sees advocacy as both responsibility and privilege.

“If my story helps even one person access better care, then it’s worth it. Because no one should have to wait until 28 to finally have pain-free days.”

For support or more info about Migraine Australia visit:

Website:  Migraine Australia

LinkedIn: Migraine Australia LI

Disclaimer: This story is published with the consent of Chloe Cifelli and Migraine Australia. All details and perspectives contained herein are provided by Chloe Cifelli and represent her personal experience. They do not necessarily reflect the views, policies, or positions of Molecule2Market.