Not many people know what it’s like to feel like a stranger in their own body for reasons that aren’t typical or empathy-producing. Experiencing symptoms of depression or an episode of depersonalization might not be relatable, and neither might an instance of trauma or intense loss or grief, such as the death of a loved one, or living in the aftermath of a natural disaster or state of emergency.
Not many people possess intimate knowledge of embodiment, unless they are victims of chronic illness — a persistent or long-term health condition or disease that can make you feel alone, helpless or embarrassed, according to the testimony of those living with chronic illness.
Chronic illness is no doozy, although its symptoms can be anticipated, and the continuity of the experience of discomfort, frustration or limitation among sufferers is a given.
Chronic illness is not unusual, in the sense that it is predictable and easily explained due to its constancy, and that’s precisely why the burden it places upon sufferers often goes ignored.
You can predict the presence or onset of chronic illness, but you cannot predict the turmoil it will produce or the vexation that will unfold when an individual comes to feel responsible for her life in spite of feeling as though her life no longer belongs to her — because her illness is in the driver’s seat, and she’s a mere passenger along for the ride.
Chronic illness is consuming and debilitating, but worse, it is silent. It is often something endured in quiet, a secret kept hushed out of fear of becoming a burden to others, derived from the desire to be invisible because it’s not easy to be someone that other people must always take care of or feel sorry for because they assume that one is always feeling under the weather.
It’s not easy to tamp down the urge to express sorrow at one’s unfortunate circumstances without feeling resentful or guilty for doing so, because conventional wisdom tells one that it’s wrong to engage in self-pity.
And it’s not easy to be the sick colleague or the frequently absent employee or the flighty friend that’s always canceling pre-scheduled outings or bailing on lunch dates for seemingly valid but predictable reasons that some interpret as excuses. It’s not easy to be the depressed daughter or the too-sick-to-get-out-of-bed student, or the chronically absent sister.
It’s not easy to be perpetually unwell in a culture that values health and wellness.
Chronic illness tends to take over your life until you feel less like a human and more like empty space, vacuous and waiting to be filled again.
Sometimes you feel like a body without a body, a house with no occupant, or worse, you feel like a visitor inside your own body, or a prisoner — wherein you are both inmate and warden — in this body that cannot possibly belong to you, or you could never have chosen to exile yourself — you can’t possibly be defined by absence. Defined by limitations, defined by the experience of being unreal, the experience of being alien or removed from yourself, the experience of being neither ghost nor haunted house, but graveyard.
The haunting, nonetheless, encircles you, until you feel gone from the world, insulated from the well-functioning, able-bodied others, sequestered into the lonely prison cell of your body, cut off from the rest of the world, disembarked from planet Earth.
You are separated from the experience of aliveness. You want to hold the feeling in your hands. But the more you want it, the more it eludes you. The more your life becomes a mirage, the life you’ve always dreamed of, the life that allows you to be a fully present, healthy member in society, one that pledges and devotes all of the energies of her body to the experience of being human.
That is what you long for: the essence of being human.
But can the human essence be preserved in a body that is often seized by maladjustment? Can a human being recuperate when faced with the constant dilemma of health or life, choosing between living well and taking time away from society or working tirelessly and sacrificing one’s health and dignity?
Is that really a choice? Choosing life or health? Calculating the pros and cons of maintaining secure employment and a stable emotional well-being when under constant threat of losing one’s job or forfeiting one’s sanity due to frequent missed attendance or the financial insecurity induced by the untimely costs of medical bills and inaccessible, unreliable health care and insurance?
Can one retain the notion of realness or selfhood when made to grapple with the tension of being sick in a society that elevates wellness? Can an individual bear the question of whether or not insurance providers will provide stable and sufficient coverage, or bear the costs of seeing a physician or routine health practitioner, in addition to the costs of visiting specialists, which aren’t covered under standard clinical visits, so insurance companies place a premium on them?
Can a person recover economically and psychologically from the strife and stress generated by the expense of clinical trials and the price of costly, out-of-pocket advanced medical treatments, or the debts accrued from unplanned and expensive hospital stays, and so much more?
Can a chronically ill person preserve the instinct of being human, reserve any semblance of being real amid all of this chaos, unpredictability and turbulence, among the insecurity that categorically defines their lives and threatens their resilience, their persistence and their ability to thrive?
Too often, a sufferer of chronic illness is denied the experience of personhood, and she begins to feel like a dead woman walking back into her grave, except her life is her gravestone, for she is not already dead, although her illness has marked her as missing from the world. So, she, and you reading this, begins to wonder: Am I dead or have I simply disappeared?
A feeling of presence and visibility evades you.
You want so desperately to be seen by the world from underneath the rubble of their perception of your body and bodily ability, but you feel like your illness squashes the opportunity to self-identify, to self-label, to self-volunteer the information you want promoted about the experience of your body and the depth of your sensations and feelings about yourself.
But you are defined by the absence, and the sensation becomes self-decorative so it introduces you before you have the opportunity to self-define how you feel.
Other people’s interpretation and construction of your body and your illness become real. If you can offer a self-definition, you can escape the reality of your illness, but others’ delineation suffocates you.
And so, an internal feeling of lack, if you’re not careful, submerges you into a web of despair so thick, you begin to identify as a hollow shell of who you used to be, a black hole of nothingness, a room with no windows to let light enter through, a spider circling the drain, desperately searching for a little trickle of water to emerge from the spout so it can quench its thirst. You are a woman searching for water in the arid desert, and you are spinning headfirst in the sand.
But you don’t have to become well to become real, although your condition tells you that you cannot restore your human dignity or reinstate the sensation of being alive until it vanishes or a cure identifies itself. This is because chronic illness frames the condition of being human as the condition of being well.
Chronic illness conceals the anguish of being. If you are a chronic illness sufferer, you know this.
If you are reading this, you understand what it means to be under siege by the weight of these deliberations and the pain of nonbeing, but you don’t have to be alone in your struggle anymore. Talking about chronic illness honestly can help you recover the strength to restore humanity and visibility to your body and identity. Illness does not have to be your defining marker.
You are real even when you feel unreal, even when your illness convinces you otherwise. The human condition and full range of sensory experience is not limited to those who identify as conventionally healthy or well. You are human and alive, not ghostly, even when you feel unwell or undead. The light, beauty and visibility of your identity belong to you, but deserves to be shared with the world. You don’t have to suffer in silence anymore.