I don’t want to try to get better anymore

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My roommate was reading The Parasite Underground and quoted me the bit about trying different drugs, doses, timing:

If you have a terrible reaction to hookworm — which isn’t uncommon — you might start over with smaller doses, and gradually introduce larvae over a longer period of time. Different organisms might also work for different disorders.

And while I can’t say that’s not a helpful thing when you’re trying treatments for any chronic illness, the EXPECTATION that once you get sick, you must always be trying something new, something else, an old thing at a different dose, taking the pill at 4pm instead of 7am, etc. is just exhausting.

I’ve been trying to get better for 25 years. And I’m so tired of it. New drugs and treatments with new side effects every few months, pushing through work with treatments that should be temporary for months until I crash, convincing my supervisor I’m not a malingerer because “my doctor and I are trying new solutions,” spending money I don’t have on weird devices and supplements, doing work I don’t have energy for because I gotta get $$. It’s exhausting.

Sometimes I wish I could just give up on getting better, accept how sick I am, and get $25,000/yr to play with data and make graphs and bake cookies and read books and garden and lie in bed with my lovers and write and draw and nap and take care of myself.

I guess even well people feel like that.

Control the body

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If, as Foucault argued, modernity was the act of disciplining bodies, then Wolff’s migraine personality was discipline in its extreme—a pathological reaction to the corporeal demands of power. His subjects’ neatness and fastidiousness, he wrote, was exceeded only by their efficiency. People with migraine loved order and repetition, feared failure, and resented interruptions. They created elaborate “schemes, plans, and arrangements,” but “had great difficulty in complying with or adapting themselves to systems imposed on them by others.” The description of type A personalities varied depending on who had them. Women migraine patients who “worked” at home also wanted everything to be “just so,” but they had difficulty delegating even simple household tasks, like dishwashing, to housemaids.

Joanna Kempner in Not Tonight

This is how a 9 year old whose head won’t stop hurting gets sent to clinical progressive relaxation training

Mental states influencing physical states wasn’t always interpreted as malingering

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Wolff’s migraine personality was also informed by a burgeoning psychodynamic literature that viewed bodies as “systems of psychobiological adaptations.” Using this framework, migraine could be understood to be a protective device that provided a way for the body to withdraw from stressful situations. In fact, migraine was thought to be an especially useful adaptation for overruling an overdetermined, overly ambitious mind. Nevertheless, this psychosomatic framework emphasized the realness of migraine. Should any of his students forget that emotions could have as real of an impact as any somatic, measurable fluid, Wolff would remind them. Scrawled on the bottom of his lecture notes were the words “You are at the beginning of a new era when—Loves Hates Fears are as real as management of lump [sic] in the chest or pus in the pericardium.” Psychosomatic medicine did not, for Wolff, mean “imagined.”

Joanna Kempner in Not Tonight

Whereas psychosomatic now means the doctor is washing their hands of you.

Also HAH we distinguish between mental and physical states.

Patterns

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Patterns

The visions produced by mescal and other hallucinogens would usually
progress from these elementary forms of hallucination to elaborate
visions of a much more personal and sometimes mystical sort (including
scenes of people, animals, and landscapes). But Klüver remarked that the
lower-level, geometric hallucinations that preceded these were
identical to those found in a variety of conditions: migraine, sensory
deprivation, low blood sugar, fever, delirium, or the hypnopompic and
hypnagogic states that come immediately before and after sleep.

Clavus hystericus

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Clavus hystericus, sometimes called “hysterical headache,” is the clearest example of a gendered diagnostic category in this time period. In his Treatises on the Diseases of the Nervous System, James Ross describes hysterical headache as a variation of hysteria: “Hysterical Headache is met with in females, and is generally accompanied by other symptoms of hysteria. This form of headache is on the one hand closely allied to trigeminal neuralgia, and on the other to true migraine. The pain is sometimes diffused and deep-seated, but it is more frequently limited to one spot, and feels as if a nail were being driven through the skull; hence it is called ‘clavus.’ Hysterical headache is increased in severity during the menstrual period and by mental worry, whilst it is removed by amusement and anything which engages the attention.” “Hysterical tendencies” could distinguish the pain of clavus hystericus from other headache disorders, although authors were usually vague about what, exactly, constituted these symptoms. In his 1888 monograph on headache disorders, Allan Mclane Hamilton suggests only one objective distinction: “Hysterical women are very apt to complain of very great diffused hyperaesthesia of the scalp, so that the simple act of brushing the hair causes great distress.” (This complaint might now be diagnosed as allodynia, which is a pain condition associated with migraine.) Knowing which of his patients had what Hamilton called “neuralgia,” which is described in his book as having a solid biological basis, and which were merely hysterical was important for treatment, as hysterics “are more apt than any others to form the opium habit, or that of alcoholism, and great care should be taken lest, by yielding to their demands, we foster something worse than the headache or hysteria.”

Joanna Kempner in Not Tonight

Today’s discussions of the opioid epidemic and chronic pain, whose pain is real, and who deserves treatment echoes some very old discussions.

Migraine Art

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Migraine Art

Gallery of paintings by Olea Nova depicting migraine. She is not a migraine sufferer herself, but worked from descriptions of migraine from patients and medical practitioners.