Being crushed by migraine discrimination

At the moment everywhere I look there is real, tangible, inexplicable and inexcusable stories of migraine discrimination. It makes me furious.

I know that I am over-reacting right now after Gold Coast University Hospital kicked me out because, and I quote ‘we need the bed’, without being seen by a doctor, three hours after being brought in by ambulance. But the rampant and systemic dismissal of migraine, as though it’s something minor, as though we don’t matter, is just *everywhere* right now.

At this point in time we’re trying to get answers from the Brisbane Metro North HHS as to why they will provide Botox treatment for literally anything but migraine. It’s not from a lack of available staff: they have at least two headache specialising neurologists on staff who administer botox for migraine in their private practices, and another who specialises in – wait for it – botox.

At the same time, we have hospitals cancelling Botox treatments in Sydney because COVID. And I do understand Liverpool is under an enormous amount of pressure, but it isn’t just Liverpool, the people we have been in contact with weren’t offered an alternative arrangement to ensure their treatment happened – they just got cancelled. This is despite it being well known that Botox treatment *must* happen on schedule, missed treatments has really bad consequences, and even articles like the below desperately pleading that safe Botox treatments should absolutely continue in lockdown. AND despite us making this point to every health minister in the country last year.

Then there’s the one I’ve been banging on about for a while – the deliberate exclusion of migraine from the Census. Yes, they knew. Yes, they knew ages ago – I’ve been trying to get migraine in that question for two years. I was assured there would be a text box in the question, but there isn’t, so now migraine (and hundreds of other diseases, especially those that affect women) are left out and will be discriminated against for the next 6 years. As someone with a PhD in Research Methods, why the ABS has such poor survey design always bamboozles me, but why they’d even bother putting a question in the Census when the data from it will be absolutely useless really is unfathomable.

The one that makes me really crazy angry, inconsolable in my rage, is the deliberate and intentional exclusion of migraine from the definition of chronic neurological conditions in the COVID-19 vaccination advice from ATAGI. To be fair to ATAGI, they’re only copying the bad precedent from PBAC, but given there is evidence that people with migraine are more susceptible to symptomatic COVID-19, and more likely to fare badly with Long COVID, and the common symptoms of migraine are likely to mask the TTS complication of the AZ vaccine (we don’t exactly batter an eyelid at a severe headache that is unresponsive to pain meds people…), why they continue to exclude migraine as a qualification for early vaccination with Pfizer is beyond me. That they would exclude migraine in teenagers as a chronic neurological condition is really dumbfounding as it is rarely diagnosed except in those with severe presentations. Most of us have to suffer with being undiagnosed and feeling alone and stupid until our twenties or thirties.

Insert all the expletives. I’m furious at the whole world right now. I need to focus on a battle we can win, but all of them seem to be the most important, and all seem unwinnable when trying to compete with a global pandemic.