Chronic migraine, and why equity must be more than rhetoric
Go away, not today.
I feel my balance is off; my head feels like it’s being pushed to the side, and something is hitting it. A dull but painful feeling. I see my fingers pressing down on the keys on the keyboard, it’s as if I am watching someone else’s hands move.
Go away, not today.
My migraines look and feel different every day. Pain like a jackhammer at the side of my head pounding at my temple, my head feels like it will burst.
I miss the flow state of running regularly, half marathons, and even a full marathon. Now taking the dog for a walk can be a challenge.
I recall taking our dog for a walk one day, I could see the plants gently moving in the sea breeze and the path, but my left hand and dog had disappeared completely from my vision.
There are times that I had to stop eating as the sound of my teeth breaking through a piece a crunchy toast hurt my head.
I have missed playing backyard cricket with my family, missing out on the laughter and trying to hit a six over the fence; as the noise and movement is too much.
Sometimes it’s like my brain has short circuited and unable to find the words, I can see them but can’t grasp and articulate them; it’s like watching leaves fall from a tree, blowing around in the wind; and you have no control.
I recall one occasion when I was in the shower and water ran over me and down my face, I looked up and moved my arms and it was like I was wading my hands through ocean water and clearing all the migraine debris, the clouds had shifted, and for a millisecond everything seemed clear and calm. It was the most beautiful experience, and I want this feeling back. Free of pain, free of dizziness, free from foggy brain, and free from being off balance.
There are times when I need to use my “resources” such as breathing techniques, visualisation, quiet space, dark space, a shower, dip in the ocean, be surrounded by nature, cup of tea, medication, cold compress, divert attention. I desperately try anything…everything. Having a sleep doesn’t help.
Mostly, I push through the pain and distortions. Why, because I want to feel like myself again.
My work is part of me, the person I am, and I have made deliberate choices to work in spaces that align with my values of social justice. Equity, safety and freedom to live and love in life is something that everyone is entitled to, yet this is not the experience of all. This is what drives me to be part of the movement and influence in creating change.
It’s only the last couple of years that I have acknowledged that I have a chronic health condition. It’s been seven years.
Women are more than twice as likely as men to experience migraines, it is the leading cause of disability worldwide for women aged 18-49. Would there be more research and trials if this was not the case?
Women experience “gender bias in the health system, which can prevent or delay their health conditions being properly diagnosed and treated.[1]
Chronic migraines is one of many health issues that affect women, The Victorian Inquiry into Women’s Pain in 2025 tells us that many women have unmet healthcare needs, are neglected in research and subject to sexism and misogyny with women’s pain being inappropriately managed.
The medications I have tried over the years are vast, the appointments many, I shudder to think of the thousands of dollars I have spent on this. Thousands of dollars and hours in life, to get an answer, to be rid of this; and I’m still not there.
“A challenging case”, “unique”, “not sure what else we can do”, “I’m out of ideas”, “sorry we have failed you”, is not what I want to hear from specialists I have seen.
I try to be positive. I have access to specialists and medical care. Even when it feels difficult, I can navigate complex health systems, advocate for myself; and respectful communication and transparency with my neurologists.
There are many nuanced challenges that people experience; for example, people who are on temporary visas are ineligible for Medicare; and for those with fear that a visa application will fail on health grounds accessing these healthcare services is not a realistic option.
Having your every movement controlled and monitored by a perpetrator of family violence limits access to healthcare services and medication.
Financial implications are vast, creating a systemic barrier for essential care.
Being misgendered, previous negative experiences and discrimination, and where pain and concerns are dismissed does not provide accessibility to a culturally safe health service.
First Nations people experiencing racism and oppression with deep mistrust based on previous and family interactions with the healthcare system, again experience systemic abuse and the ongoing impacts of colonisation.
Sufficient lighting to read medication instructions, a refrigerator to store medication and a private and safe space to self-administer medical injections is not conducive to homelessness.
Experiencing several forms of oppression and discrimination creates an amplification of barriers to healthcare, medication, and an environment that supports you to live your full life.
What’s the solution and how is this being addressed?
This is not equitable healthcare, and this is not supporting all people to have resources to be the best version of themselves. The amplification of barriers and discrimination in seeking healthcare is not the fault of individuals, nor is it because they represent a particular community or cohort; this is a systemic and structural issue.
There are opportunities to create change; to promote and realise equity for everyone.
Our role as leaders in dismantling systems, structures and approaches that we work in that benefit few, and hold back many, must be realised, challenged, addressed, acted on, and reinterrogated. Importantly, shaking the shackles of the systems and structures that have been cultivated and created over years to especially benefit those with power.
This is one of the key things that keeps me going, influencing change.
We can all influence change.
I have shared my experience in the hope that it is one piece you hear or read from the richness of lived experience that is different to yours. This is part of my story and by no means everyone’s experience with chronic migraines is the same. I hope this is one of the things that informs your reflective practice, prompts you to ask yourself and others key questions in decision making and further learning and unlearning.
We can interrogate, rewrite, redesign and reinterrogate systems and structures and ways of working that create and sustain equality and have better outcomes for all people.
Written by heidi.
[1] Commonwealth of Australia, Department of the Prime Minister and Cabinet. 2024. Working for Women: A Strategy for Gender Equality. Page 8