Havi Carel’s life was split open in April 2006 when she was diagnosed with lymphangioleiomyomatosis (LAM). LAM is a rare, chronic disease marked by the abnormal growth of smooth muscle cells in the lungs, leading to serious and progressive respiratory failure. Since then, LAM has permanently impaired her lungs. With that, it has stolen her ability to breathe freely, to cycle, to cook with passion, to walk briskly and anxiously when rushing late to a family dinner, and, really, to do everything else that humans do with lungs (that is, to do everything that makes life quietly, breath-fully, effortlessly alive). Most vexingly, LAM has arrogantly dismantled the cornerstones of the healthy, thoughtless, and breath-full existence she had once known (and taken for granted) and that every healthy, breath-full human tends to take for granted, especially when anxiously rushing late to a family dinner.

An interesting fact about chronic illnesses like LAM is that, typically, there is no definite cure to offer huge amounts of hope, nor a sunny, clear sky at the end of the tunnel in sight. Instead, the mind rotates in a flustered vortex of refusal and restlessness, hunting for the Heart of the Matter:

Why? Why me? Why now? Why is everything changing? Why me? Why am I changing? Will it stop changing?

Why me?

Why me?

Why me?

So many existential questions dangle in the unsparing vortex of chronic illness. Similar questions swirled in Havi’s mind as LAM impaired her ability to do all the innumerable things humans do with lungs.

An interesting fact about existential questions, though, is that they are quite (in)famous for resisting answers— or at least, satisfying ones.

To make matters worse, if you fall ill, you have to go to the doctors. Well, actually, that in itself is not (necessarily) the bad part. The “making matters worse” part is that doctors are fluent in a perplexing, jargon-filled dialect that might feel oddly alienating and strangely dehumanising; (a little ironic in a sci-fi-apocalyptic-movie kind of way, too).

Of course, (good) doctors will inform you of all the physiological processes going wrong in your body. And that’s great; that’s what (good) doctors should do; we appreciate them for it.

However, everything else—the silent, personal transformations chronic illness imposes on your day-to-day reality—typically remains outside medicine’s scope.

This is what Havi Carel slowly came to realise. When she got ill, she discovered a scientific and unwanted distance between her and the doctor(s). The same doctors who knew nearly everything about her internal organs. The same doctors she now had to trust with her life. Likely for the rest of her days.

Spat out by an unknown carved into form only by the medical label of a rare disease, Havi found herself unarmed, buffeted by a life that no longer mirrored the one she had always known.

She stood undone.

When you’re sick (of jargon)

Here’s an interesting fact about Havi: she refused to simply accept that she was lost in her novel vortex-ed world and in her doctors’ jargony dialect.

And here’s a second interesting fact about Havi: she is a philosopher—more precisely, a philosopher who got ill. She had existential questions about everything that was happening to her; but, like all philosophers, she loved to wrestle with those questions. Havi was determined to make sense of this incapacitating experience from her own first-person perspective.

Unlike the usual medical approach, she didn’t want to understand her changing self by peeking through the veil of perplexing jargon, scientific manuals, or late-night doomscrolling. Instead, she realised that to come to terms with those “whys” and medical labels, she first needed to accept herself and her changing world on her own, undistanced terms.

She knew she deserved to focus on how she felt first and how she could effectively communicate that first-person point of view in a shared space of comfort, trust, and humanity with her medical professionals.

And here’s a third interesting fact about Havi: she chose to explore these new modes of self-understanding and self-communication through philosophy itself, that is, the very discipline she had studied extensively, written about dearly, and loved long before LAM burglarised her breaths.

To this day, Havi Carel continues to research and write about how philosophy can illuminate the lived experience of illness, and how it might offer a deeper, more compassionate way of relating to those who find themselves, as she once did, suddenly and inexplicably unwell.

But, Philosophy? How exactly?

Ooh, ooh, it’s just me, myself, and chronic illness (and Havi Carel)

Before diving into the hows, I want to tell you something: comically enough (though not really), like Havi Carel, I am a human who has studied philosophy extensively. I hold both a BA and an MA in it. I wouldn’t call myself a philosopher (yet), but I surely overthink enough.

More critically, I am a human who is chronically ill. And being chronically ill has not been easy. Besides the alien medical dialects and a world turned upside down, being chronically ill as a human who is also a woman has been problematic. I was forced to swallow a lot of medical gaslighting, scrambled with deep-rooted sexism, and over-salted with mountains of unexplained fatigue.

I encountered Havi by chance in my overlapping journeys—that of philosophising and that of taking hormone-filled pills for the rest of my life. These overlapping journeys now push me to talk about the philosophical framework Carel has put together for making sense of her (and mine, and maybe our) chronic illness.

Hopefully, this can help you, if you need it, to make sense of a changing body, and hug a lost, wandering, confused, restless soul.

Making sense of what’s happening to you is a fundamental part of “healing” when you’re chronically ill. It’s not really about “fixing” your body (which will always be a bit broken no matter how hard you try), but mending your rips enough to be a little more serene, to sleep with fewer worries, and, if possible, to forgive yourself.

What to do when the body betrays you (asking for a friend)

As mentioned above, Havi Carel wanted to find a philosophical way to cushion the searing blow of her chronic, breathtaking illness.

But when she started turning to philosophy, she noticed a strange and troubling gap.

While Big Philosophy™ loves to go deeeeeep into the concept of Death [(see Heidegger), or don’t; just know your man had a historical crush on mortality], it says very little about illness (which is somehow funny, considering that illness often kicks off the dying). It seems that the experience of illness, while it creeps in, sticks around, and changes everything, somehow has slipped through the (institutional) philosophical cracks.

Carel noticed that this strange philosophical blind spot has a lot to do with the dominance of the naturalistic scientific approach. This approach is hyper-focused on “disease”, that is, on what’s biologically “wrong,” what’s visible, measurable, scannable, and treatable.

Something breaks. You fix it. Done.

Overall, this approach assumes that observable, physical markers provide a sufficient understanding of what it means to HAVE some kind of, hopefully, repairable condition. However, it also kind of neglects how it feels to BE ill.

Yet, Havi’s not here to slander science; we want and need doctors; we want and need casts on broken arms; we want and need contained bleeding.

Instead, by identifying this gap, Havi just seeks to fill it and complement science with the patient’s first-person perspective. Havi sought to develop a framework that can only add to the existing medical approach. The lived experience of illness (i.e., what it feels like to be derailed by your own body) is not easily found in bloodwork or in Latin medical terms. It needs its own kind of language. And, ideally, its own kind of philosophy.

To start building this new framework, Havi turned to what philosophy calls a phenomenological perspective. Here, “phenomenological” means focusing not on the cold, objective, scientific facts of disease, but on how the phenomenon of illness—how illness itself—shows up in the lived experience of the person who’s ill. In other words, phenomenology explores how chronic illness presents itself as a lived phenomenon that radically reshapes beliefs, limits the sense of agency, disrupts freedom, and transforms one’s being-in-the-world.

To really get what Havi’s work is about, you also need to understand another key philosophical concept: the difference between the body-object and the body-subject.

In The Phenomenology of Perception (1945), French philosopher Merleau-Ponty explains the body’s strange double life: it’s both an object that can be seen, touched, measured, and a subject that perceives, acts, and experiences the world. Put simply, you don’t just have a body (the biological body-object); you are your body (the lived body-subject).

This means your body isn’t just a thing to be inspected or fixed like a machine; it’s the very condition through which you experience everything as a subject. Your body drives your thoughts, your actions, your emotions, and your relationships. Your body is what makes a world appear to you in the first place.

Havi noticed that chronic illness breaks this dynamic flow between body-object and body-subject. Suddenly, the body-object (the part that can be measured and treated) starts dominating and overwhelming the body-subject. The body that once allowed smooth, goal-directed movement and engagement with the world becomes a burden, an obstacle, a medical case. It no longer serves the self seamlessly; it no longer opens; it now gets in the way to (breathe, cycle, run, and doing all the things that humans usually take for granted).

This betrayal is devastating: the body, once a silent, trusted partner in living, becomes an antagonist to Being. One stands frustrated — no longer supported, but objectified by biological limits that cannot be ignored (and probably will not be again).

When the body breaks down irreversibly, the once-confident “I can” collapses into “I cannot”—or worse, “I no longer can.”

What happens, then, when the wide horizon of future plans shrinks, and the story of a continuous self begins to fall apart?

Can a person exile their own body?

(They can’t.)

Pause, name, rewrite: a phenomenological toolkit

Against reflections like these—and to help chronically ill humans better navigate the unsettling experience of radical redirection—Havi developed what she calls a phenomenological toolkit. It's designed primarily for patients but works best in dialogue with healthcare providers. The toolkit offers three steps that explore how the physiological and clinical disruptions of chronic illness are tightly interwoven with shifts in identity and the patterns of everyday life. Gradually, it builds a shared language that reaches beyond symptoms, labels, and test results.

Here’s how the three phases unfold:

  1. Epochè (pause the assumptions): borrowed from phenomenology, epochè means to “bracket”—to ”set something aside.” In this first phase, it asks the chronically ill human to pause the medical story for a moment: the terminology, the results, and the biological frameworks. Instead, what if attention turned to how the illness actually appears in everyday life? What does it feel like in the body—in movement, in sleep, in breathing, in eating? How does it shape the smallest, most ordinary moments? What is happening beneath the diagnosis?

  2. Thematisation (name the experience): next comes naming. This step invites the patient to reflect on how illness has shaped identity, routines, and emotional life. What has shifted—not just in the body, but in how life is lived, in ways of relating, and in who one is becoming? It’s about tuning into the quiet, often overlooked changes and connecting them to the larger questions of direction, purpose, and meaning.

  3. Reconceptualisation (rewrite the meaning): in the final phase, the patient and doctor are invited to think together. Rather than focusing solely on what is wrong or what needs to be fixed, the conversation turns to meaning-making. What do these changes mean for the patient’s life, now and going forward? How might the story of illness be reimagined — not erased, but re-understood? How can the doctor step into this story, not just as a fixer, but as a witness and a partner?

This toolkit isn’t about curing or solving. It’s about pausing, naming, and co-creating space for the experience of illness. It turns the silent, swirling, suffocating mess into something real, thinkable, and shareable. So you know: it’s not just in your head. It’s real, and it deserves words and recognition.

It might help you find a way to hold onto your story, to discover purpose in a body and life that have shifted, and to honour both the “thing” your body is and the “you” still living inside it.

If you want to see how this all plays out—including my own story—Part 2 will go deeper. I’ll walk you through how I’ve been adopting Carel’s toolkit in my own healing process while learning to live with a body that doesn’t always lend its support.

Hope to catch you there.

Sources

Carel, Havi. Illness: The Cry of the Flesh. 2008.
Carel, Havi. Phenomenology of Illness. 2016.
Merleau-Ponty, Maurice. Phenomenology of Perception. 1945.