While philosophical reflections on purpose and fulfillment often remain abstract, personal experiences bring them to life in unexpected ways. After exploring the broader ideas of finding one's true calling, this piece shifts to a more personal perspective, examining how my own journey unfolded. This is a story of discovery, hesitation, and the realization that paths we once overlooked can sometimes lead to the most fulfilling destinations.

In May 2018, after two weeks of persistent mild fever, unrelenting fatigue, and a horrid break-up, I discovered that I had contracted the Epstein-Barr virus, or, as it is more commonly known, mononucleosis. While for many, mononucleosis means a couple of weeks of rest, good sleep, avoiding shared glasses, and, most importantly, not kissing strangers (or loved ones if you are a good person), for me, it marked the end of my previous life and the beginning of a new, quieter someone I am still trying to meet and understand.

The problem was that post-infection, in addition to being unable to jog for three months (an ability I had carefully built over time), my immune system inexplicably turned on my thyroid, causing its permanent impairment. To this day, I can proudly reassure you that my thyroid does not work, and I am no longer able to produce the hormones necessary to heat my body, kickstart my metabolism, allow my hair to grow adequately to have appealing volume, or maintain a decent mood without taking a little pill every morning (whose dosage I keep changing because sometimes it works, and sometimes it doesn’t), which I will need for the rest of my life. Indeed, my thyroid did not resurrect on the third day (sadly, I am not divine).

This permanent imbalance has ushered me to the domain of chronic fatigue, constant inflammation, heartbreaking swelling of my lymph nodes (and a love for the memes around swelled lymph nodes), and pervasive musculoskeletal pain that I endure daily — though at a low level, you can bet I am not perfectly comfortable in my body at any time of the day.

The worst part of my story is that I did not even have the privilege of knowing I was chronically ill at the beginning, and that all of that pain was happening for a reason.

This truth was preserved for me.

I was repeatedly dismissed by medical professionals, who would chalk up my symptoms to stress and anxiety. I was simply a girl who needed to relax more, study less, and take more walks on the beach because I needed iodine (who doesn’t?).

The issue is that I did not just need iodine. My body was trying to function without fuel, and it struggled for nearly two years before a (reasonable) doctor would give me a diagnosis and reveal that, after all, I was not just a girl who was stressed, studied too much, or required more iodine because I was stressed and studying too much – my body was, genuinely, truthfully, unmistakably not working.

How does this story (my story) relate to Havi’s (illness and philosophical research)?

What if I applied her toolkit and her three steps to my experience?

My epochè: lacking the brackets

As mentioned earlier, in her effort to restore the (rightful) authority of patients, Carel uses the concept of ‘epochè’ — the act of setting aside the doctors’ technical, objective diagnosis and focusing on the patient’s first-person perspective as a body-subject.

While I get why this step is foundational in valuing a patient’s story, my OWN experience of medical gaslighting showed me how the absence of a definitive diagnosis for two years shaped my encounter with illness in the opposite direction; rather than experiencing the progression from objective medicine to subjective experience, I found myself stuck in a frustrating epistemic struggle: without the credibility of an official diagnosis, I found myself longing for that label, that medical term that could finally make me real in the eyes of doctors. I was caught between being too much of a subject and not enough of an object—too human, but not objectified enough by those who were supposed to objectify me.

I ran into the glaring flaws of a healthcare system that still relies so heavily on visible evidence, like it is following some sort of quasi-legal logic where patients have to “prove” themselves. It felt like I was trapped in an “ocularcentric” system, where if it was not seen, it was not real.

Only “rational” proof mattered. In this system, the problem is not the eye itself—it’s just that the eye is the only one in charge, monopolizing everything else, making up illness and human experience overall. And so, I found myself seeking validation from the eyes of the one person who, for some reason, had the Power to confirm or dismiss my lived experience—the Doctor. Seeking validation, I craved the brackets of a rational vision as I was experiencing my body becoming more tired, heavier, and almost-collapsed without it being believable, touchable, or writable.

The desired embrace within the clinic's walls reflected my longing to be acknowledged in a shared reality that recognized the credibility of my body and validated me as a reasonable lived-subject, not a hysterical, stressed-out, anxious young woman mistreating her body and/or making a big deal out of “nothing”. Rather, it would have been gratifying to stitch up the Cartesian ravine whereby responsibility had to be assigned to either my mind OR my body, to either anxiety or sickness.

In reality, I was chronically sick and anxious, as my thyroid was not functioning, my immune system was deteriorating, and my body had indisputably ceased to fuel my days. The lack of belief drove me to such exasperation that, upon finally being acknowledged-even if that meant officially and objectively having a disease-I could just feel relief: I am not just crazy; I am not just lazy. I have something real.

My thematization: being in an unreal world

I want to explore my experience of illness as a kind of failed positioning within reality; something I would term as “Being in an unreal world.”

In the two years preceding the diagnosis, the untreated fluttering of my thyroid had triggered all the symptoms outlined in that medical manual whose shelf I was still unfamiliar with: my metabolism had ceased functioning, I consistently felt too cold, my heart was beating too slowly, I gained weight, and my hair began to fall out. As a doctor would later remark when reviewing my old analyses a few years later, ‘I don't know how you forced yourself to maintain your routine; these values are incompatible with a normal life.’ Indeed, my life had ceased to be “normal:” the lethal combination of the unexplained fatigue in my limbs and the lack of medical confirmation made me no longer believe in my body. I convinced myself that it (I) was lying to me, that my inability to get out of bed was an eccentric will imposed by my laziness.

No longer being able to stand upright both physically and mentally, my sobbing self was swimming in the murky gap lying between the fact of being physically limited and barricaded, and the desire to bodily free my freedom. Thus, I began to push away that deceitful thing I was forcefully attached to, slowly cradling myself in a faraway world where I abandoned that body to fend for itself against reality. I wanted it to be a credible medical object, but still not an unbearable burden for myself. Until I let the weight go, assuring that I could not feel it anymore: while the body-object was pulling downward, increasingly tired, my lived-subject, in a desperate attempt to catch its breath and reclaim that desire, mutilated it. Having become derealized, I was there and, at the same time, I was no longer present; rather, I found myself beyond things.

Even now, as I’ve slowly tried to rebuild that mind-body connection, if I focus too much on what I’m perceiving—especially when I’m feeling sick—I can’t help but ask myself: Is this real? Am I really in my body?

Everything left under the parentheses

In the unfolding narrative of my illness, despite the initial absence of a formal diagnosis, I unwittingly began accumulating the very losses highlighted by Carel. No longer was my body the silent and transparent springboard from which I leaped into the world; instead, it became a constant query: Do I have enough energy to rise from bed today? The paradoxical truth is that my persistent deterioration has established a curious dialectic between my need for exile, as underscored by my derealization, and the hope of continuing to nurture my gerunds: of getting up, of doing, of rejoicing.

Growing up, I loved sitting on the floor in front of the stereo, flipping through CD albums, and eventually getting lost in a song. I would immerse myself in the music and let my body float in the colourful sensory whirlpools it created. That was the epitome of me as a lived subject, a body full of desire, potential unfolding into action. However, since May 2018, I have come to understand that I have a body schema on which I cannot always rely to grasp the external world: I do not know if I will necessarily have the energy to get up, reach the bus stop, walk with ease, or sit on a university chair without pain.

My body has transmuted into one of those antiquated televisions, plagued by static, operating sporadically, not consistently, and never with seamless continuity. I navigate through hiccups: at times, I can run; at times, I can't even walk (hic!); occasionally, I can tidy up the house, while lifting my back from the mattress at times requires all the energy I have for the day (hic!)

As an Italian song goes:

Voglio una vita maleducata
Di quelle fatte, fatte così
Voglio una vita che se frega
Che se ne frega di tutto sí.1

In my case, despite not wanting it, I have an unruly life, with a body that eludes my control, that does not care about re-establishing a connection with the 'mineness' of my lived-subject.

Despite these prevailing perceptions—and even after medical validation arrived—it took me some time to come to terms with the reality that I was ill. Then, one day at the table, two years after receiving the diagnosis, back home after another check-up, I turned to my sister (almost a doctor then, a doctor now), sighing, “So will my thyroid always be smaller? Will it never work again? Will I always be tired? Can't I do anything?”

She looked me in the eyes and, with clinical nonchalance, fixed me with her bite of food, muttering, “Yes, Glo, you're chronically ill.”

References

1 “I want an unruly life/ One that's made, made just like that/ I want a life that doesn't care/That couldn't care less about anything, yes” (my translation) (Vasco Rossi, Vita spericolata, 1983).
Carel, Havi, and Kidd, Ian James. “Epistemic injustice in healthcare: a philosophical analysis.” Medicine, Health Care and Philosophy 17, no. 4 (2014): 529-540.
Carel, Havi. Illness. The Cry of the Flesh. 3rd ed. Oxon and New York: Routledge, 2019.
Carel, Havi. “Phenomenology as a Resource for Patients.” Journal of Medicine and Philosophy, 37 (2012): 96-113. Accessed November 27, 2023. doi:10.1093/jmp/jhs008.
Carel, Havi. Phenomenology of illness. Oxford: Oxford University Press, 2016.
Fricker, Miranda. Epistemic Injustice. Power and the Ethics of Knowing. Oxford: Oxford University Press, 2007.
Kidd, Ian James and Carel, Havi. “Epistemic Injustice and Illness.” Journal of Applied Philosophy, 34, no. 2 (2017): 172-190.
Merleau-Ponty, Maurice. Phenomenology of Perception. Oxon: Routledge, 2012.