The Romance of Diagnosis
Seeking and Finding the Definite Article
daisy lafarge
Sibylle Lacan’s short memoir, A Father: Puzzle, was written between 1991 and 1994 and published by Gallimard in 1994. The English translation followed twenty-five years later. Sibylle was Jacques Lacan’s second daughter and the last child from his first marriage before his union with Sylvia Bataille and the birth of his third daughter, Judith. The book documents Sibylle and her father’s relationship from her earliest memories to the years following his death in 1981. Sibylle describes a relationship defined by Lacan’s absence, insufficiently punctuated by his attempts at fatherly attention. Lacan would occasionally take the adolescent Sibylle out for lavish meals or on holiday with him, but such gestures seemingly did little to redress the formative impression of his absence from Sibylle’s early years. She grew up knowing that she must have a father, Sibylle writes, “but apparently a father was something that wasn’t there.” The book’s opening paragraph traces Lacan’s absence to its earliest possible origin, imagining for its author a quasi-immaculate conception: “when I was conceived, he was already elsewhere.”
While Sibylle bore the famous surname and Judith didn’t, the latter, whose existence Sibylle only discovered when she was seventeen, figures in the book as everything Sibylle is not: beautiful, feminine, sexually desirable, Daddy’s favorite. Judith is the only daughter whose photograph graces Lacan’s desk and, when Sibylle is in her thirties, an acquaintance informs her that Lacan’s Who’s Who listing names Judith as his sole daughter.[1] Only seven months older than Judith, Sibylle appears as something of a shadowy twin, eclipsed by her sibling, perhaps not surprising for someone conceived in absentia. In her own assessment, Sibylle, who died by suicide in 2013 at the age of seventy-two, was small, boyish, and, at best, “cute.”
She was also sick. At the onset of adulthood, Sibylle fell ill with flu-like symptoms and never recovered. A disabling fatigue—along with chronic pain, anhedonia, unbearable fogginess, problems with memory, and unrefreshing sleep—plagued her for the rest of her life. When able, she worked as a translator of Spanish, English, and Russian, but her illness—which mystified doctors—also rendered her “incapable of work” for long stretches of time. As the years accumulated, “the idea of suicide,” she writes, “began to haunt me as the only solution to my suffering.”
On first reading A Father: Puzzle six years ago, it was the dark, fable-like quality of Sibylle’s family scene that arrested me—her tracing of the psychic wounds inflicted first by the father’s absence and his rejection of her in favor of a sibling she barely knew. I devoured and internalized passages of the book with a hunger and possessiveness that surprised me; Sibylle’s memoir offered variations on the familiar absent father narrative that I had not often encountered. It was not so much that the father left, but that the father was never there to begin with; it was not so much that the father was absent, but that this absence had never been properly named or explained, making it several things at once: edgeless, frightening, exciting, bewildering. This seemed epitomized by Sibylle’s choice of an indefinite article in the book’s title (the difference between a father and the father should not be underestimated), which resonated with me. As a child, I was totally unaware of having a father until my schoolmates informed me that, despite my claims to the contrary, I must have one, because everyone does. I was amazed by the revelation of this secret that had been kept from me. Like Sibylle, my eventual encounter with the father was preceded by years in which the idea of a father hung in the air, abstract and godlike. That I eventually met him did little to reconcile the articles; the indefinite had already done its work.
Rereading the book now, I am equally struck, if not more so, by Sibylle’s illness and the elusiveness of diagnosis. Her illness, too, is inconsistent in name and article; it shapeshifts throughout the book’s pages, an ellipsis demarcating something indeterminate and consuming, yet ultimately isolating and unliveable. Toward the end, Sibylle writes: “I have already mentioned my ‘illness’ and certain of its symptoms. But that is not the point of my book. I will limit myself to mentioning only what is necessary to understand the things I have written here.” I wonder about those scare quotes. Do they indicate the difficulty of naming something so personally devastating yet lacking medical validation? Or are they in fact a defensive gesture, in which readers are anticipated to side with the doctors and family members who doubted the reality of Sibylle’s so-called “illness”? Even the sympathetic reader I was six years ago found it easy to absorb Sibylle’s physical symptoms into a broader picture of her psychic suffering; what she described happening in her body seemed almost too neat a metaphor for her psychic struggles.
This stems in part from the way in which Sibylle introduces her symptoms; the first mention of her falling “mysteriously ill” directly follows, without even a paragraph break, her account of holidaying with Judith and Jacques when the girls were young adults. Sibylle paints a scene of incestuous desire and usurpation: Jacques and Judith dance “like two lovers” at a village fête; Judith joins them in Italy after a work trip on which all her male colleagues were in love with her. Sibylle describes Jacques as being “very proud” of Judith’s desirability, and her concession that Judith “was Queen” seems to precipitate her own collapse: “a general enervation, no more longing, no more pleasure, a dreadful turmoil.” Here and elsewhere in the book, Sibylle’s narration places the occurrence of her symptoms alongside instances in which Jacques Lacan’s sexual attention is directed elsewhere. Following her post-viral breakdown at twenty-one, which mystifies several doctors, Sibylle’s mother suggests calling Lacan for help. The meeting is set, and Sibylle describes “great expectations” for her father’s ability to diagnose and cure her. The stakes are high; Sibylle writes that those around her have already begun to suspect her of malingering. The appointed time comes and goes, and Lacan does not arrive. Sibylle waits on the balcony, and it’s from there that she sees a woman emerge from a nearby house of assignation, followed a few moments later by Lacan. Rage finally breaks through the film of Sibylle’s fog and fatigue: “How could he have tormented me so just to satisfy his own desires first?”
“When Sibylle pushes him to name her condition, two years after its onset, Lacan slips into the conditional: ‘[I]n the nineteenth century, we would have called you neurasthenic.’”
The scene does not extend beyond Sibylle’s sighting of this betrayal; in the next section she relates that when Lacan eventually came, he prescribed a separation from her mother. Sibylle was due to spend a year in Moscow to improve her Russian and feared she would be too unwell to manage the trip. At Lacan’s insistence she left, only to return thirteen months later uncured. Still struggling, she again sought her father’s help. Lacan advised against a sleep cure—“he informed me that [they] created dependency”—and finally made arrangements for analysis. The first was unsuccessful, as Sibylle was exhausted by the Métro ride across Paris; the second was more useful, but Sibylle began to suspect, correctly, that her analyst was also her father’s mistress. The third analyst she chose herself. Her slow recovery, however, Sibylle credits not to analysis but to a lover, who was the first to believe her condition “without trying to understand.” This is also the section in which Lacan comes closest to offering his daughter a diagnosis. When Sibylle pushes him to name her condition, two years after its onset, Lacan slips into the conditional: “[I]n the nineteenth century, we would have called you neurasthenic.”
Neurasthenia was, by that time, already an outdated diagnosis. In the nineteenth century it was believed to be a dysfunction of the nervous system, allegedly responsive to rest cures or electrotherapy. In an early text on anxiety, Freud linked it to coitus interruptus, suggesting that men were more predisposed to neurasthenia because they were less able than women to bear the blows of impotence, frigidity, and low libido. If women did become neurasthenic, it was usually because they had been driven to hysteria by a neurasthenic husband, because they could not conceive, or because they were approaching menopause. In her book Conversion Disorder: Listening to the Body in Psychoanalysis, Jamieson Webster notes that Lacan’s Seminar X, Anxiety, seems to agree with Freud’s observation that women are less prone to neurasthenia than men, because women are better able to traverse the anxiety that is itself constitutive of desire and “pulls them to the edge of themselves.” By saying “we would have called you neurasthenic” Lacan manages to invoke the history of this condition and hint at the sexual failure from which Sibylle’s illness may originate, while at the same time arguably not say anything concrete of the sort. Sibylle offers no comment on this ghost of a diagnosis, and at no point in the book does she reach for psychosexual interpretations of her symptoms, even when they coincide on the page with the eclipsing sexuality of her father or sister. What is clear, and consistent, is that she suffered immensely.
*
In March I arrived at a residency in New Hampshire with a fever. I probably shouldn’t have traveled, but one of the stupid things about having a marginalized chronic condition is that because you are repeatedly told that there is nothing to be done about your pain, you end up normalizing what would otherwise prompt someone to seek medical attention. This is how I have been surprised to retroactively discover having had pneumonia, and having passed a kidney stone, because I couldn’t hack another pointless GP visit about “my pain.” In the UK’s National Health System (NHS), the first port of call is an appointment with a General Practitioner (GP), who has the power of referral to specialists and appropriate treatment. Once you are under the care of specialists, the GP will wash their hands of you until a new issue unrelated to your condition arises. My condition, Ehlers Danlos Syndrome (EDS), is marginalized within the NHS because there is no specialist department to oversee our care or organize treatment. This is a void that even many GPs seem unaware of; every year thousands of patients suspected of or diagnosed with EDS are referred to Rheumatology, only for Rheumatology to reply and say they won’t treat us. Since EDS is a complex connective tissue disorder that can affect every system and organ in the body, this has devastating consequences.
Every issue through which the condition manifests is then filtered into a different department, with no dialogue between these departments and no framework in which the issues are understood or treated as complications of EDS. The engineered decline of the NHS under austerity means that each of these referrals may take months or years. It falls to patients to self-advocate, to research our conditions, and to explain to doctors why local anaesthetics or certain surgeries will not work as well on us or that certain medications put us at risk of further injury. In order to join the dots, patients are forced to go outside the NHS and seek private care and treatment; yet, because EDS is a chronic condition, even those with the necessary means are not eligible for insurance. In an ongoing cost-of-living crisis and assault on disability benefits, few can afford these costs up front. The last referral my GP made for me was to a hospice-like day center that primarily caters to terminal cancer patients, where I was offered week-long courses in mindfulness and CBT and tips on how to get more vegetables in my diet. You can see why I might be reluctant to visit my GP every time a new symptom arises.
Before my flight, semi-delirious with fever, I decided that as long as it wasn’t COVID I would travel. I tested negative twice, slipped on a mask, and dosed up. The morning after I arrived, I walked from my cabin in the woods past a snowy field to the main house, where residents gather for meals. I met a few of them at breakfast and discovered that speaking felt like slicing my throat with a razor. I said I had a cold and sat at the far end of the table, which meant none of them could hear me when they asked what I was reading. The Romance of the Rose, I rasped. What? THE ROMANCE OF THE ROSE.
Afer breakfast I took another test from the communal pigeonhole, and this is how I came to spend my tenth COVID infection in a cabin in the woods, with no Wi-Fi, dwindling data, and only a lengthy thirteenth-century dream allegory for company. Apart from the fever and jetlag convincing me that I had irreversibly lost my mind and the fact that breathing felt like my airways were being mangled to pulp in a bear trap, it wasn’t so bad. Three times a day, for four days, meals appeared outside my door in a picnic basket. The cabin was warm and bright and had a high arched ceiling that made it feel like a chapel crossed with a gingerbread house. Gangs of wild turkeys straggled past the window. I took little walks along the muddy forest trails and occasionally glimpsed other residents from afar; later I found out that some of them thought I was a ghost.
The Romance of the Rose tells of a dream in which “the whole art of love is contained.” The young lover falls asleep and wakes in an idyllic landscape. He finds his way to a walled garden, in which a beautiful fountain is shaded by a tall pine tree. It is Narcissus’s fountain, and although the lover knows it to be perilous and deceiving, he cannot help but look. In addition to his reflection and a thousand other tantalizing things, he sees a reflection of “rosebushes loaded with roses.” The image instills mad desire and guides him to the real roses, whose odor “penetrated right into [his] entrails.” Of all the rosebuds, one is tighter, juicier, and more beautiful than the others. This is the lover’s fateful encounter with his beloved, the rose that he will spend the next several hundred pages desperately trying to possess. The book consists of two uneven halves: the first was written by Guillaume de Lorris in 1230, coinciding with and contributing to a burgeoning literary culture of courtly love; the second—accounting for more than three quarters of the length—was completed by Jean de Meun some forty-five years later.
The first section is pacy and vivid. A cast of allegorical characters encourages the lover to touch and kiss the rose, but then Jealousy builds a fortified castle around the rosebush to keep him out. In Jean de Meun’s addition, the quest to obtain the rose drags on, as several new characters engage the lover in long discursions on subjects such as the nature of mirrors and how ladies should best keep up the appearance of their “chamber of Venus.” There’s a contemporary texture to the way the plot keeps vanishing beneath the cycle of monologues but, compared to the luscious imagery of Guillaume de Lorris’s writing, it feels frustrating. I wish that Jean de Meun was as equally invested in porny descriptions of roses and that the lover would stop chatting and get back to the quest he’s allegedly on. After several hundred pages of such digressions and putting obstacles in his own way, one begins to question whether the lover even wants to obtain his heart’s desire.
In his seminar on ethics, Lacan describes such detours and obstacles as intrinsic to the workings of courtly love—a tradition he believes still exerts significant influence on “the organization of contemporary man’s sentimental attachments.” The idealized object, the lady or beloved, is introduced and defined by her inaccessibility—often literally enclosed in a castle or hortus conclusus or else separated by class. Because she is unapproachable, she cannot become, to the lover, a real person, and “is emptied of all real substance.” This leads Lacan to observe that “what man demands, what he cannot help but demand, is to be deprived of something real.” One of Lacan’s students suggests “vacuole” to name this state of sublimation, referring to an organelle bound by a membrane within a plant or animal cell—both separate from and suspended in the cell
around it. Later in the seminar, Lacan notes that the stages of courtly love are expressed in more or less the same terms Freud uses in relation to foreplay; the obstacles and detours of the quest “are techniques of holding back, of suspension, of amor interruptus.” In this light, the endless digressions of Jean de Meun’s lover seem a successful sublimation, a vacuole in which the gift of love, because suspended, remains possible. Fewer porny roses, but infinite foreplay.
*
Maybe my reading experience was overdetermined by the arc of my fever, but during those days in the cabin I began to feel that the book was itself something of a perilous mirror, in which I saw reflected a lengthy quest that had consumed me for several years. The version I had lived was not The Romance of the Rose but The Romance of Diagnosis. My unobtainable object was not an otherworldly beloved, but a secret that may or may not be shut up in the hortus conclusus of my body. What would happen if I actually acquired this object was less clear. Like any sick woman whose bloods routinely come back “normal” and fail to explain her symptoms, I had received my fair share of medical gaslighting. And while it is true that the condition I was eventually diagnosed with has a famously delayed rate of diagnosis—an average of twenty-two years after the onset of symptoms—if pushed to name the most consistent obstacle in seeking a diagnosis, I would not point to the medical establishment. Real, harmful barriers do exist—skewed by race, class, geography, and medical ignorance—yet for many years, I was so adept at intellectualizing my symptoms that I rarely got close enough to doctors to encounter these structural obstacles.
“[I]f a father was ‘something that wasn’t there,’ then a mother was something unstable in a different way.”
When I first read A Father: Puzzle, I was in the fifth year of what would, in total, be an eight-year-long psychodynamic therapy. Like Sibylle, I had experienced a breakdown at twenty-one (on a year abroad in Finland, rather than in Russia), but unlike Sibylle, I thankfully did not have to worry about my therapist’s sexual relation to my parents. The therapy continued weekly throughout my twenties, and I credited it then, and still do, as a lifeline during those years. It occupied what had been missing from my childhood—a single fixed coordinate that existed outside of myself and on which I could rely for consistency. At the time of entering therapy, I had never lived in one place or with the same family members or attended one school for a run of more than two years. Moving between my mother and my grandmother in my early years and being caught in the conflict between them apparently led to a confusion when I entered language about who was whom; if a father was “something that wasn’t there,” then a mother was something unstable in a different way.
What I mean to sketch here, without getting too far into it, is the psychic landscape of my therapy, the context in which I occasionally raised my physical, as well as psychic, symptoms. From an early age I experienced such neurasthenic maladies as brain fog, dizziness, fatigue, and poor sleep. The summer I entered therapy, I broke the radial head on each elbow a month apart from each other (a bike accident; a poorly executed cartwheel) and regularly seemed to have some minor injury on the go. My therapist, I believe, saw these injuries as a kind of acting out, a making visible of the ways in which I had not, as a child, been supported to hold together. It’s difficult to summarize a therapy of this length and significance, but he was consistently kind and nurturing; he sometimes occupied a mentor-like role, encouraged me to write, and introduced me to the work of Klein, Winnicott, and Kristeva. While he did not dismiss my physical symptoms, he also never seemed surprised by them; given the constant upheavals of my childhood it was perhaps inevitable that my joints would prove unstable, that my thoughts would fuzz over, and that the world would frequently become so overwhelming that I would be forced to retreat.
This line of interpretation suited me; I had always felt alienated from my body, and so it seemed right to reroute its complaints back to their psychic origin. I was far more comfortable with intellectualizing than I was with “checking in with my body,” and in retrospect I see that I took a kind of pride in the way I could analyze and dismiss my physical symptoms as they arose. I had never exactly heeded the signals of fatigue—the idea of rest flooded me with anxiety—but I began to push through them more actively (to an extent that my therapist, I should add, did not encourage). As the therapy progressed, life became slowly more bearable. Yet physically, I was getting worse. I became panicked about what this meant. Was there something I was un-willing to work through in therapy, or failing to address, that was instead undermining my body? When the lockdowns started, the therapy went remote, and by the time they were lifted our sessions had petered out. My therapist assured me he was still “there,” should I need him. I was surprised to find that, after so many years, I was no longer certain that I did.
*
Around the time I turned thirty, which coincided with contracting COVID for the first time, my symptoms turned from occasionally disruptive to debilitating. There were worse and more frequent injuries, stays in the hospital, sometimes weekly appointments and tests, but no clear answers. It became impossible to work or travel; I could no longer push through, and I crashed out of the career for which I had spent my twenties training. What added to the agony of this period was the terrifying thought that I was somehow making it happen: self-sabotage at a life-wrecking scale. Around this time, I also started a new analysis. Its first year was spent, almost exclusively, wading through the tangle I’d made of symptoms and interpretations. While I wanted reprieve from my suffering and had suspicions about what might be causing it, I was also suspicious of my own latent desire for diagnosis. I feared that seeking an explanation for my symptoms amounted to crystallizing around a premature conclusion: a romantic illusion of stabilizing identity that instead conferred rigidity, like succumbing to a conspiracy theory because I could not bear uncertainty. Though I had not yet read The Romance of the Rose, my fear lay in becoming like its protagonist: the seeker who idealizes, and orients his existence around, something that was never really there at all.
There was no decisive moment when this conflict began to shift in the analysis, but gradually and thankfully, it did. My analyst pointed out that the preeminent “diagnosis” of my childhood was the DNA test I took at age ten to determine the identity of my biological father. Had the role of diagnosis become confused, in my mind, with this Copernican shift from a father to thefather? Could a diagnosis not also just be something practical, that might lead to less suffering? Slowly, things started to untangle. I discovered that even acknowledging my physical symptoms as “real” brought about some relief, as it lessened the anguish of overanalyzing them. I found that it was possible to seek and receive a diagnosis without making it into the fount of all ills and that I would still have plenty of neuroses left over to enjoy.
It would be foolish to make any comment on the nature of Sibylle Lacan’s illness, but her descriptions seem far less enigmatic in the wake of a global pandemic that escalated rates of post-viral illnesses, such as ME/CFS and long COVID. I was reminded again of A Father: Puzzle while reading Vijay Masharani’s superlative essay on a failed analysis and his analyst’s refusal to believe his life-threatening symptoms before it was almost too late. Masharani writes, “In the literature I’ve reviewed, organic illness must be ruled out before a symptom is declared psychosomatic, and this step of initial credulity seems to have been skipped.” A further challenge for analysis emerges in cases for which ruling out organic illness may take as long—or longer—than the analysis itself. The analysand may lack access to diagnosis or the illness itself may still be marginalized within medicine.
In both desiring and fearing diagnosis for so many years, I maintained a conflation of articles—as if a diagnosis could only be the diagnosis. Yet finally gaining one didn’t guarantee appropriate care or treatment or even medical acknowledgement. The diagnostic criteria for my condition are due to be revised in 2026, and research into its genetic (and likely epigenetic) triggers is ongoing. As soon as next year, I may have to adopt a new acronym and a new medical articulation of my syndrome, even as my symptoms remain unchanged. Clinical diagnoses come and go, and the claims they make on reality prove fragile; they affirm both the limits of current knowledge and the instability of their objects. In this sense, it was relieving to discover that the premature conclusion that had caused me so much apprehension was not so conclusive after all.
That the diagnosis did confer was a position that I could occupy and from which I could advocate, both medically and in the space of analysis. I found that learning to live with a chronic condition—one that requires daily maintenance and the managing of new and old symptoms and that lurches between progress and decline—has a lot in common with analysis itself. Both are orientations within suffering, attempts to suffer better. The diagnostic journey for my condition is often described as an “odyssey,” and when I did eventually reach the end of mine I was reminded of the lover at the end of The Romance of the Rose, who is expelled from his dream the moment he attains his object: “Before I stirred from that place where I should wish to remain forever, I plucked, with great delight, the flower from the leaves of the rosebush, and thus I have my red rose. Straightway it was day, and I awoke.” With diagnosis in hand, I could snap out of the odyssey and enter into the far less romantic realm of chronicity. I got what I did and didn’t want, and now it was time to get on with it.
[1] An annual British index of census data on influential figures.