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Between Sickness and Health: The Hierarchy of Illnesses

Emma Laura Schouten


Listen to Emma reading out her own Mammoth in Dutch here:


Although it’s taboo to discuss, the realm of the sick is hierarchical. There are conditions we fear in a kind of reverential way: illnesses which are the subject of bad news delivered by people in white coats, diagnoses that are direct or indirect causes of death, anomalies that can be reliably established through blood tests or scans. But there’s also the type of condition that is collectively seen as inferior, as inflated discomfort, inappropriate self-pity. As if subjective experiences caused by various illnesses can be compared to one another, can be substantiated by objective measures.


We are in awe of illnesses that we can’t begin to fathom, because we suspect that suffering beyond our imagination must be tremendous. A major disease like MS is hard to relate to and therefore met with deference. We equally respect all-too-familiar conditions; we know how debilitating a feverish flu is, how weak your body feels when it keeps retching despite an empty stomach. Then, there is another category, in the grey area in between. This third category consists of conditions that resemble something we might know firsthand, yet are actually fundamentally different. These illnesses are at the bottom of the hierarchy. The quasi-familiarity of these conditions traps us into thinking we can tell someone with depression: ‘Cheer up, we all have bad days.’ To tell someone with endometriosis that menstrual cramps are simply no picnic. To offer someone who cancels an appointment because of a migraine an aspirin.


Ever since my first period (I was eleven, more of a child than a teenager) I have been at the mercy of migraines at least once a month. My mother, who also has migraines (just like her mother did) instantly recognized my symptoms and shared her medication with me for years, after the GP declared they didn’t prescribe it to children. Each month, I missed three days of school: this was the headache phase. The phase that, presumably because it has the most apparent symptoms, has become synonymous with migraines as a condition. The phase characterized by a pounding, unilateral headache that worsens with physical exertion or exposure to light or sound. On the days preceding and following the headache phase, my body demands of me to take it easy. On these days, I am tired, irritable and experience what is known as brain fog: the feeling that I’m cognitively not fully grounded in this world. These symptoms were no valid reason to skip PE, for example, as it required a doctor’s note, which, like the medications, I was denied.


Thus, I learned at an early age that the suffering I experienced was not legitimate unless it was validated by someone else. Even when I grew older, this validation was still missing. ‘I simply had migraine headaches,’ Joan Didion writes in her essay ‘In Bed’, ‘and migraine headaches were, as everyone who did not have them knew, imaginary.’ There is power in words and in a lack thereof; in the way we approach and describe, acknowledge, or deny another’s reality. I catch myself avoiding the term ‘migraines’, dreading the connotations that are hiding in the other person’s gray matter, and instead revert to the more relatable term ‘headaches’, because this can count on some empathy. The dramatic irony of this approach: in order to receive empathy, I paradoxically communicate a version of my illness that does not correspond to my actual affliction. I suffer from ‘ordinary’ headaches often enough not to lie when I complain about them, but it’s the unspeakable migraine days that isolate me. It follows that any ensuing empathy is futile, as it fails to fulfill my desire to be seen. For the unseen remains hidden: the ill person, who, as a spectator, solitarily bears knowledge of what other people in her life cannot see.



The outside world’s attitude towards my illness causes me to doubt myself. I question my pain tolerance, wonder whether it is ridiculously low, whether other people would unflinchingly label what I call migraines as headaches – would even experience them that way. I want to know if I am allowed to engage in self-pity, if I have permission to label my pain as such. For guidance, I turn to something that can give me some insight into the intangible: numbers. I learn that migraines rank second among the most debilitating diseases in the world; first, even, among people under the age of 50[1]. And: ‘Women with menstrual migraines spend four to five years of their life in a dark room.’[2] I’m well acquainted with this room: closed curtains; incessant, inescapable pounding; gnashing my teeth while fighting with the pillow. I also read that ‘migraineurs miss an estimated three to six days of work a year due to migraines.’[3] This is what I now know about my pain: second/first, four to five, three to six.


I bend willingly to match the statistics, take a fast-acting orodispersible tablet in the dark hours of the morning so I can get on my bike and teach my classes a few hours later. I have lunch by myself in the classroom so as to avoid the staff room, where someone will inevitably ask me how it’s going, which will lead to the end of my workday. When I finally lie down in bed that night, I don’t think: I've managed again. Instead, I lay out tomorrow’s tablet on my bedside table. Tomorrow I will get by on autopilot once more, but the day after – that’s the day I think about in bed. The day I do not take a tablet to curb my reliance on medication for fear of rebound headaches, the paradoxical phenomenon stemming from the overuse of (pain) medication. I must face this third day alone, and I don’t know if I can. I do the math. One migraine attack per month, in a good month. Two pills per attack, one day of getting by unaided. Twelve months a year, twelve days I have to manage on my own, and I call in sick on half of those, or even less. It can be done, then.


During parent-teacher night, a colleague barges in while I wait for the next set of parents. She asks me why I’m sitting in the dark and turns on the lights before I can answer. Under the relentless fluorescent lights, the pounding on the left side of my head increases, so severely that I don’t hear the knocking on the classroom door. I force a smile as I welcome the parents, listen to them, talk about their child’s spelling abilities, all while pondering how it’s possible that pain of such magnitude doesn’t tear my skin apart, doesn’t leave a gaping wound with a raging firestorm inside. On the way home I cry, because of the pain, but mostly because of my own ability to bear and hide that pain. I don’t like to think of myself as a person capable of hurting herself.


Illnesses low in the hierarchy are routinely misunderstood. My illness exists by virtue of self-report and is therefore inevitably less credible. This fact is compounded by the fact that I am a woman. Migraines are two to three times more common in women than men and is therefore easily dismissed as a female affliction: something to do with hormones, whining – a weakness. As early as 1872, British physician Edward Liveing noted that women seemed more prone to migraine attacks than men; he attributed this biological difference to the menstrual cycle.[4] It is plausible that women linked migraines to their cycles well before that time, but migraines, as a ‘women's illness’, have been subject to gender bias. For a long time, medical researchers investigated the pathogenesis and treatment of migraines by using male subjects, both human and animal, in order to circumvent the menstrual cycle – a complex variable in standardized scientific studies. It has only recently begun to dawn on the clinical scientific community that it’s precisely this ‘complex variable’ which might hold valuable information, such as the possibility of hormonal treatments for women with menstrual migraines.[5]


I have always clung to the idea that I am not a patient, and have carefully curated my identity without including that term; I do not take medication daily, I rarely visit hospitals or medical specialists, I function adequately according to prevailing societal norms. I wonder whether I have perhaps perpetuated this perception myself, more so than those around me, more so than society. I wonder whether I am the one who believes I’m not entitled to labels like ‘chronically ill’, ‘patient’, ‘diminished quality of life’; that those terms are reserved for people whose illnesses are more visible, less gender-specific – in other words, higher in the illness hierarchy. My dogged determination not to think of myself as a patient now strikes me as pathetic, because it means I succumb to the expectations and demands of others who must determine for me whether my symptoms are severe enough, or when I am ill enough not to show up, rather than listening to the unambiguous signals my own body sends me.


I do, however, have a stake and interest in maintaining some distance between my identity and the term ‘patient’; between my migraine attacks and the label ‘illness’. Being a patient carries stigmas with it; it implies a call for help and an implicit responsibility: those who are ill want to get better. I feel judged when people give me well-meaning advice and are surprised to hear that I haven’t tried acupuncture yet, haven’t given all types of triptanes a go, stopped taking beta blockers – a preventative drug – after three months… In short: that I settle, for now, for the combination of a pill that only sometimes suppresses an attack, and a few days a month in a dark room. I don’t want to have to justify why I have or haven’t tried certain treatments, and I object to the notion that I have to choose: either I have an illness and therefore want to devote my entire life to curing it, or I’m not ill (enough) and therefore shouldn’t claim diminished quality of life. My headache-free spare time is scarce, so it’s important to me that I get to determine how much of that time I spend on my migraines – they already take up enough space as it is. My desire for recognition and my demand to be seen consequently seem incompatible with my reluctance to apply the terms ‘patient’ or ‘chronically ill’ to myself. This seems to be the heart of the problem: in today’s society, you are either ill or healthy. If there is any space in-between, it is only because you are on your way to one of those two extremes. Spending your whole life in that in-between space is simply impossible.


In ‘In Bed’, Didion talks about another interpretation of that in-between space: if you are neither ill nor healthy, your personality must be at fault. A ‘migraine personality’, for example, would include characteristics such as perfectionism and conscientiousness, which contribute to sustaining or worsening migraines. This toxic but persistent idea suggests that the patient is partly – if not entirely – responsible for their own suffering. In a meritocratic society, where we attribute the causes of fortune as well as misfortune to the person it befalls, it’s tempting to give in to such horoscope-like, circular reasoning. At the same time, you’re unlikely to encounter similar types of reasoning for other kinds of illnesses: a cancer personality, a fracture personality? It seems that illnesses low in the hierarchy are particularly subjected to this personality approach: we are less surprised when someone who always seemed a bit melancholy develops depression rather than someone we knew as the life of the party.


Without a doubt, lifestyle modifications and psychoeducation can alleviate suffering, just as personality traits can play a role in the development of illnesses and the process of treating them. However, with illnesses higher up in the hierarchy, this approach is a value-added tactic, seeking to improve quality of life, whereas for illnesses lower in the hierarchy, it is implied that this holds the key to curing the illness entirely. Doctors and medical websites advise migraineurs to avoid stressors and other ‘triggers’ – for one patient, alcohol could be the culprit; for another, aged cheese or lack of sleep – despite the fact that scientific research has scarcely been able to identify causal relationships between one’s lifestyle and migraine attacks. [6][7] It has been almost three years since I last drank alcohol. Although the frequency of my migraine attacks has not decreased, I abide by this self-imposed restriction because, even if it does nothing else, it prevents the feelings of guilt that accompany an attack if I had a glass of wine four days before.


This is why I believe a different interpretation of the migraine personality is more plausible. Our personalities are not set in stone, but are rather the result of a complex interplay between our genes and the environment; the range of possibilities may be genetically fixed, but the actual manifestation is shaped by our interactions with the world around us. This means that our personality is fluid and can change because of certain experiences, such as illnesses. From this perspective, the so-called migraine personality could be a consequence rather than a cause of the illness; a coping strategy to better deal with a life that’s continuously interrupted at unpredictable intervals by something beyond our control.


This response to a lack of control also affects the time that is not tainted by the illness itself. Migraines are episodic: the course of the illness is characterized by recurring attacks with however many days in between. Even if there is any recognition at all, from the outside world, of the migraine episode itself – once you have seen someone at the height of a migraine attack, you will no longer question whether or not this condition is equivalent to a headache – there is certainly no recognition of the time between episodes. However, even that time is tainted: knowing something will recur changes your relationship with time. On occasion, I’ve been reproached for not being able to relax, for having a tendency to be excessively productive, even on weekends and holidays. On attack-free days, it is indeed difficult for me to sit back and relax, as I don’t know how many of such days I am granted that month: hence, I feel pressured to use the available time well. Although this pressure does not compare to a migraine attack, it is closely linked to it. It forms an invisible but integral part of the illness for me, as does the guilt associated with frequently cancelling commitments, and constantly doubting what may or may not be possible for me in the near future; working full-time – with migraines? Raising a child – with migraines?


Despite my personal grievances, this essay is not a plea for pity: I am not advocating for a different hierarchy in which illnesses like mine are ranked higher. Instead, I am advocating to completely dismantle the hierarchical framework we apply to illnesses, which involves comparing the incomparable and downplaying both our own suffering and that of others. A shift towards a more empathetic approach, one that trusts and believes subjective accounts of illness, should be attainable. An approach based on taking others at their word when they express discomfort, pain and/or diminished quality of life – whether that person be your patient, employee, or partner. An approach that leaves room for the realm in between illness and health.


Increasing the visibility of illnesses can indirectly lead to better care. How and why money flows in the world of (medical) research is far from transparent. However, it is evident that ailments associated with high societal costs, and ailments that receive plenty of attention in the public domain, are of interest to both the government and the pharmaceutical industry, which funds clinical trials for profit. Many illnesses ranking low in the hierarchy meet the first requirement – migraines are estimated to cost between 2.3 and 4.2 billion euros per year in the Netherlands due to missed workdays and other such losses [8] – but not the second. In an interview with a Dutch newspaper last year [9], neurologist Hans Carpay called migraines a ‘hideaway disease’: people suffering from it are unlikely to unite and fight for greater recognition and better care.


In order to create a shift towards better care and more empathy, invisible illnesses must be made visible to the outside world. Often, however, you can’t count on much approval when disclosing your suffering. Self-reporting – letting people know what’s going on – is obvious, but less straightforward than it seems: it’s difficult to navigate the social expectations inherent to questions such as ‘How are you?’ (or, worse: ‘Are you okay?’). Then there’s crying: a universal sign of distress, but within patriarchal societies a sign of loss of control as well and, therefore, of weakness. Disregarding such communicative signals can lead to destructive manifestations which cause other, more visible pain to be inflicted in order to translate the actual pain – when invisible pain is expressed through self-injury, for example. Ignoring or trivializing signs of suffering also brings with it the risk of causing the overlooked ill person to withdraw and to deny or ignore their own illness. They may cease to pursue necessary care and other forms of support and thereby potentially exacerbate their own suffering.


An approach that is generally more accepted and appreciated is disguising suffering as art. This is not, by any means, a new idea: in 1926, Virginia Woolf already carved out a space for illness as a key literary subject in her essay ‘On Being Ill’. However, nearly a hundred years later, with the exception of a few specific illnesses, it is still seldom applied. Even I have only recently begun to explore this approach, but I can already confidently claim that it pays off in at least two ways. Firstly, I have managed to harness part of my illness as a useful resource: preceding and following the headache phase, I’m granted a few crystal-clear days on which I experience a rare sense of focus, productivity, and creativity. These days, I deliberately take advantage of this erratic superpower. Secondly, there is the space that any creation, including this essay, claims in the public domain. It can be a crusade sometimes, to reclaim my own body, but when a poem I wrote in the aftermath of a migraine attack is published, it feels like a triumph, both over my migraines and over the world that fails to understand it. It is perhaps the most radical expression of making your illness visible and tangible: giving it a platform, molding it in such a way that people cannot help but look at it, listen to it, acknowledge it.

 
  • Are you a woman and do you have one or more migraine attacks per month, including around your time of menstruation? Are you not on hormonal contraceptives and would you like to participate in a scientific trial that studies the link between hormones and migraines? The Leiden University Medical Center (LUMC) is looking for participants. You can find more information on https://whatstudy.nl/over/.

  • Within the medical context of this essay, the terms ‘male/men’ and ‘female/women’ refer to the biological sex assigned at birth. Research on migraines in transgender women and men is, at this time, very limited. The idea that hormone fluctuations may play a role in the frequency of migraine attacks suggests that this would be a relevant area of research.[10]

[1] Steiner, Timothy J., et al. ‘Migraine is first cause of disability in under 50s: will health politicians now take notice?’ The Journal of Headache and Pain, 19 (2018), pp. 1–4.

[2] Pointer KRO-NCRV. ‘Een vrouw met menstruele migraine ligt 4 tot 5 jaar van haar leven in een donkere kamer.’ 13 maart 2022. https://pointer.kro-ncrv.nl/vrouw-menstruele-migraine-4-5-jaar-donkere-kamer

[3] Kok, Lucy, and Carl Koopmans. ‘Notitie Economische effecten van migraine.’ (2021). SEO Economisch Onderzoek. https://www.seo.nl/publicaties/economische-effecten-van-migraine/

[4] https://www.neurologylive.com/view/history-migraine-gender-ratio

[5] Eisenstein, Michael. ‘Closing the gender gap in migraine research.’ Nature, 586.7829 (2020), p. 16.

[6] Hindiyeh, Nada Ahmad, et al. ‘The role of diet and nutrition in migraine triggers and treatment: a systematic literature review.’ Headache: The Journal of Head and Face Pain, 60.7 (2020), pp. 1300–1316.

[7] May, Arne, and Laura H. Schulte. ‘Chronic migraine: risk factors, mechanisms and treatment.’ Nature Reviews Neurology, 12.8 (2016), pp. 455–464.

[8] Kok, Lucy, and Carl Koopmans. ‘Notitie Economische effecten van migraine.’ (2021). SEO Economisch Onderzoek. https://www.seo.nl/publicaties/economische-effecten-van-migraine/

[9] De Bruin, Ellen. ‘Nee, migraine is niet je eigen schuld.’ NRC Handelsblad. 25 maart 2022. https://www.nrc.nl/nieuws/2022/03/25/nee-migraine-is-niet-je-eigen-schuld-a4104681

[10] Pace, Anna, et al. ‘Gender minority stress, psychiatric comorbidities, and the experience of migraine in transgender and gender-diverse individuals: a narrative review.’ Current Pain and Headache Reports, 25 (2021), pp. 1–9.

 

Emma Laura Schouten (Haarlem, 1994) is an editor, teacher and writer. She writes essays, prose and poetry and likes to explore where these genres overlap. Her writings have been published by various literary platforms, online and in print. In her writings, she examines the wasteland between illness and health and looks for the magical realism in daily life. She took part in the first edition of HetMoet’s Sailing & Writing Summer Course.


Illustrations: Peter De Voecht has been published in various magazines with his prose and poetry and is author of three books. He teaches creative writing at various academies and is a writing coach. He’s currently completing the manuscript for his second novel, while also making paintings and illustrations. He writes a flash fiction story every day.


Emma translated her own Mammoth into English. Read the original Mammoth in Dutch here.

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