“You can do everything right and still end up worse.”
The line, shared by one of the speakers at this year’s Migraine World Summit, continues to play on my mind. Paradoxically, it is a perversely comforting statement.
This was my first time attending the annual online summit. Readers may be surprised to learn that I am not someone who typically engages with migraine beyond living with it. I don’t seek out support groups or consume articles or podcasts that relate to the condition.
It takes up enough of my time as it is.
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But this year, after a bad run of migraine, I committed to attending the summit. Since then, the speaker’s statement has continued to linger. Yes, hope might be dashed – but guilt, at least, is assuaged. If I don’t get better, it is not my fault.
The summit was a broad-reaching affair, encompassing topics such as “preventing and reversing chronic migraine”, “layering therapies in migraine management” and “are psychedelics a legitimate treatment for cluster headache?”. The contributors weren’t quacks preying on the vulnerability of migraineurs, but people who understand the complexity of migraine and its management.
Still, amid this breadth of clinical knowledge, it is the above statement that I continue to wrestle with, and even find comfort in.
It addresses the question with which I find myself frequently contending: if I, as a patient, have the power to improve my migraine disease, is the inverse also true?
If my migraine condition does not improve, or indeed worsens, does that make it my fault?
Can it be true that improving my migraine condition is within my control, but preventing its deterioration may remain outside of it?
We each know that you can follow all the correct health advice and still become ill
In Sally Rooney’s latest novel, Intermezzo, the author discusses the theory of vacuous truth. A vacuous truth is a universal or conditional statement that is not false, but true only because it doesn’t really say anything. For example, if I tell you that “all my rice is in my pockets” and you find my pockets to be empty, if I had no rice to begin with, then the statement is a “vacuous truth” not a falsehood.
We see this parallel in health narratives. The idea that “if you work hard, you can improve your health” is a kind of vacuous truth. Yes, actions might help.
However, that doesn’t mean inaction caused the illness.
In a recent article in The Irish Times discussing the TV show Adolescence, and the prevalence of the toxic 80/20 theory in the manosphere, Joe Humphries bemoans the “reduction of truth to data points”. In the same article, he cites Pope Francis’s autobiography, Hope, and a quote the late pope employs by the poet Lanza del Vasta, writing: “The greatest and most dangerous lie – is ‘truth minus one’.”
“Not truth,” Francis observes, “but its contrived appearance, its comic or dramatic distortion”.
All this is to say, is that “truth” or the illusion of truth is a complex thing. We each know that you can follow all the correct health advice and still become ill; or disregard it and live to be one hundred years old. Alongside “truth”, there is luck, chance, and randomness.
It may seem obvious to some people that the burden of guilt should not rest upon those suffering from disease. How can you blame a person for having an illness or neurological condition? However, the recent discourse surrounding changes to UK disability welfare legislation bears out the persistent trope that people living with long-term illness are disabled because they are unwilling to try a bit harder.
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Anyone with a long-term condition will tell you they’ve felt this accusation, whether from health or social welfare professionals, policymakers, or society at large. Even those who are fortunate enough to maintain a steely belief that they are not at fault for their illness will find this belief system shaken to its core through repeated interactions with a system that says otherwise.
The inverse fallacy – or Monte Carlo fallacy as it is known among gamblers – says that it is incorrect to infer the inverse from a statement, particularly a conditional one. For example, if all comedians are funny, and Laura is not a comedian, it would be a mistake to assume Laura isn’t funny. So, while improving one’s migraine condition may be within their control, it would be incorrect to follow this assertion with the assumption that it is your fault if the condition does not improve.
Maybe you don’t feel logical theories are necessary to prove something you know intuitively to be true, but the world of medicine runs on “fact”, not intuition.
And so I wonder – how much more empowering could illness management be if it didn’t come bundled with the burden of guilt?
