Legitimate illness

What makes something a disease? And why would some people with migraine fight to have migraine recognized as a disease?

Locating migraine in the brain is believed to alleviate personal responsibility, a dynamic that advocates think is important after decades of medical practitioners telling patients that their personalities caused their pain. Identifying migraine as genetic accomplishes the same task – people cannot be blamed for migraine if they were born with it.

And despite widespread acceptance among headache specialists that migraine is neurobiological, the best epidemiological and genetic evidence has found that migraine, like most diseases, is caused by a complex interaction between genetics and environment, of which only a portion (albeit a large portion) can be attributed to inheritance. And despite widespread acceptance among headache specialists that migraine is neurobiological, doctors have yet to reach consensus on whether migraine is a disease, a disorder, or a condition. … people with migraine bring an embodied epistemology to discussions of migraine, filtering biomedical knowledge through their personal, lived experience. The biomedical knowledge that most resonates with them – that “feels right” – does so in large part because it speaks to their experience of delegitimation. “Disease” serves multiple purposes: it appears to have scientific backing, it “fits” with a bodily experience of progression debilitation that so often accompanies migraine, and it seems like a useful rhetorical frame that can draw attention to the severity of migraine.

This disease frame is then used to change cultural meanings of migraine.

– Joanna Kempner in Not Tonight.


How duration changes the experience of pain

Having some sort of time limit on suffering makes it endurable. It’s the same way that running a marathon is tolerable because you know that it will eventually end. Every step gets you closer to relief.

I don’t think I’m a lightweight. I like to believe that I’m an expert on pain, thanks to hours devoted to close study of it during the births of my two children – one at home, one in hospital, neither with painkillers. Those experiences taught me that the most intense pain imaginable can be tolerated for a time, and that the way we experience that pain – empowering, terrifying, humbling – can vary dramatically.

And so even childbirth, the most painful thing commonly experienced, doesn’t work as an objective measure. There are other sorts of pain, harder to describe. Chronic or recurring pains are insidious. They eat away at energy, optimism, endurance, sense of self. More relevant than a measurement or even a description of pain, then, is the completely subjective impact is has on one’s thoughts, behaviour, and physical health. Pain above a “level 5” – moderate pain that dominates your thoughts and to which you cannot adapt, according to one scale designed to measure it – frequently results in temporary personality disorders. At higher levels that continue without relief, personality disorders are almost ubiquitous and suicide is common.

From Carlyn Zwarenstein’s Opium Eater: The New Confessions.

It’s all in my head

People with migraine have a degraded “objective self” – that is, their “taken-for-granted notions, theories and tendencies regarding [their] human bodies, brains, and kinds” have been damaged. Sometimes people with migraine don’t even believe their own pain.

– Joanna Kempner in Not Tonight.

I remember crawling across a bathroom floor, vomiting, wondering what was wrong with me that I would go to such lengths to fake being sick.

How the expectation of relief changes pain

Pain is a complex experience

…I enjoy the waiting. Once I have decided that today is going to be a tramadol day, and I’ve given myself a deadline before which I absolutely will not cave in and take it, my experience of pain is transformed. Rather than grinding and hopeless, it feels charged, electric. The difficulty I have standing up (or sitting down) begins to feel noble. The constant, miserable, and exhausting stretching I do to relieve pain and stiffness in my joints acquires a warm-up quality.

I am already removed one degree from my own experience and it is a little more observable, a little more interesting.

From Carlyn Zwarenstein’s Opium Eater: The New Confessions.

You know you want this

I am very much looking forward to reading You Know You Want This after reading this interview with the author.

at 36, I have a handle on power dynamics and gender and all of this stuff. And it just seemed to me that at 20 – which is an adult, officially, at which age it is acceptable to go on a date with someone in their mid-30s – how could you possibly engage? It seems to me, now, so young.” One of the reasons Roupenian wanted to write the story was to explore how hard it is to delineate what is going on when attraction and repulsion combine, and when – as one tends to at 20 – one is lying to oneself about being in control. In such a case, she says, “the complications of it are more subtle than just, ‘Here’s this jerk who’s hitting on me.’”

Certainly when she was in her teens, she says, she would have benefited from the conversation around feminism being more nuanced than “everybody shouting ‘Girl power’ and ‘Girls can do anything!’ Which was great, but also, a lie.”

One of the questions Roupenian asks repeatedly in her fiction is to what extent one can ever clearly see the person to whom one is attracted. It’s a tendency among women to interpret their partners in a way that, Roupenian realised recently, is deeply gendered and completely unhelpful. “Often in relationships between men and women, there is this weird pact that it’s the women’s job to interpret their relationship for the men. That they have a right to say, ‘The problem with you is that you’re afraid of commitment, and if only you would show up at my house at an approximately reasonable time then we would be fine.’ And that is bullshit: that the men are ready to outsource their own understanding of themselves to the women, and that the women will do that job so the men will do what they want. And yet it’s a sort of agreed-upon game.”

Does she really believe no one has power over anyone else? “Emotionally, I do believe that’s true. But I think it requires a lifetime of learning to recognise the patterns.” For Roupenian, it has been a case of recognising a tendency to overestimate the extent to which “someone else has control over my happiness and ability to move in the world”, and, by extension, her control over others: “That if you’re unhappy it’s my fault, and my job to fix it. I do have a responsibility to make other people happy – you have to be a good person. But that is contradicted by the thing I have felt increasingly as I get older, which is that I do not have the power to make you happy; my ability to fix you is so limited; and my desire to fix you is complicated. For me, the process of getting older and seeing things more truly has been realising how little power we have over each other.”

feeling like loving someone meant trying to save them. For a long time I thought that was a critical part of loving someone, in a way that I do think codes female. It seems deeply embedded in ideas of what it means to be a good woman. Of helping people fix themselves; changing them a little, seeing the subtle violence and reaching for control.”

Don’t touch the art

Alberto Giacometti's "Man Walking" Sculpture. Thin and elongated figure with a rough surface leaning forward with one foot in front of the other in a walking posture

Alberto Giacometti – Man Walking

I went to the local art gallery while they had a big Alberto Giacometti exhibit. Giacometti was a sculptor and his figures are very elongated and textured. The proportions are alien, but expressive. I wanted to touch them so badly, but, of course, that wasn’t allowed.

So much art seems made to be touched, especially sculpture and fiber art, but once it’s in a museum that’s not allowed. It’s frustrating. It feels like going to a restaurant that only lets you smell and look at the food, but not taste it.

I also visited a Vikky Alexander exhibition. She has a very good series of photographs of shop fronts and malls with all their reflective and transparent surfaces. I found it very upsetting – this kind of design is confusing and overwhelming and empty. I find myself confused and upset in many modern spaces, especially those devoted to selling shit. This exhibit helped me understand some of how that happens.