Wisdom & Grief Are Rightful Partners

Beyond the 'Invisible Kingdom' of Illness and Wellness

Last year, I read

Meghan O'Rourke

’s “The Invisible Kingdom,” a memoir that chronicles the long windy path of trying to heal from chronic illness in modernity - the misdiagnoses, the gaslighting, wellness culture’s obscure treatments, and the porous nature of illness as it bleeds into mind, life, and society. I read it partly as research for how people are thinking about the mind and body connection in chronic illness, but also I figured, and was correct in assuming, Meghan and I would have a lot of experiences in common. We both had/have Lyme disease - the tick borne illness - and discovered it years too late. We also share experiences of ambiguous autoimmune symptoms, medical gaslighting, gut issues, mental health issues, and a tenacity to actually find answers in a system that seems intent on pushing the message “if it can’t be measured, it doesn’t exist.”

You can tell O’Rourke is a poet as much as a researcher, and her passages leave room for a lot of nuance and open questions. She doesn’t shy away from the messy details and seems to have found a way to not just tolerate but actually honor uncertainty in its many forms. I love that the structure of her story does not take typical form : woman gets sick, loses hope, finds a solution/cure, gets better. No. Meghan downright refuses to fit her experiences in this box and critiques it as an ableist framework, and I commend that. We desperately need more stories that don’t obfuscate the complex journey.

At the same time, there’s one particular sentiment that I’ve heard from many illness memoirs and narratives that I want to challenge. It’s best exemplified in this passage:

“Until we mourn what is lost in illness - and until we have a medical community that takes seriously the suffering of patients - we should not celebrate what is gained in it.

I believe it’s not only possible but actually necessary to do both simultaneously, to any extent possible. My biggest question is: why should we have to choose between these goals? Mourning and celebration are rarely linear, complete processes. To insist that finding wisdom or generativity in illness cannot be a goal that helps us toward social and structural change is far too constricting. Yet it remains a common sentiment.

Before I go on, however, I want to give some credence to O’Rourke’s take.

For or Against Wisdom Narratives

Wisdom narratives of illness or distress are diverse, not a monolith. The flavor of narrative that O’Rourke seems most allergic to is the particularly pollyanna, hyperindividualistic, wellness-culture brand marked by self-blame and shame. You probably know the type of messaging: ‘healing starts with the mind, if you can release ‘negative’ emotions you release the burden off the body, you are responsible for your own healing and illness, if you eat the right things/exercise/think positively you’ll get better, you are in full control of your health’, etc. It often neatly fits with buying or consuming particular products or engaging in ‘purity’ thinking by aims to eliminate environmental toxins from entering the body (as if we can neatly barricade ourselves from global environmental devastation). It often diagnoses society as ‘sick’ but focuses on personal improvements instead of structural ones.

This particular flavor of illness narrative is toxic and reinforces ideologies and systems that make people sicker. I agree with O’Rourke that we need to challenge not only ableist assumptions, subtle manifestations of colonial-capitalism, blaming individuals for structural issues, and the spiritual bypassing of pain, but also the idea that the only “right” way to be ill is to have learned something from it.

It strikes me that O’Rourke, and many others, feel that focusing on wisdom and learning can’t happen until we have a full experience of the grief of what was lost: lost time, ability, life, relationships, an in tact sense of self or meaning. She writes, “As soon as I started to feel a little better, grief rushed in[…] I feel a black hole for what I lost: nearly the entire decade of my thirties, which might otherwise have been the best decade of my life. So many possibilities and freedoms. And why?”

Our society doesn’t have embedded grief rituals or ways to express grief. Grief is often pathologized and medicated after the allotted amount of time we deem ‘normal’. We see grief as a phase or a burden, failing to acknowledge ways in which grief can be life-giving.

Yet, for so many of us, wisdom and grief live side by side, not in competition with one another. I can’t support the notion that gleaning wisdom and lessons from wreckage is inherently dishonoring or delegitimizing the experience. I do not believe that an acknowledgement of growth through excruciating pain is an attempt to gain control or bypass a tough reality. I do believe it’s not only possible but necessary to experience joy alongside grief and to value what’s gained as much as what’s lost.

It is not always possible and it is right to push back against those who demand us to play the ‘good patient’ who is always positive and focused on what’s learned. Yet, I find it equally as troubling as the pollyanna/spiritual-bypassing wisdom narrative that it’s become intellectually fashionable to be skeptical of any kind of admittance of generativity through suffering. To me, this limits what we believe people are capable of and the complexity that we can and must hold.

Why Generative Frameworks are Good for People and Movements

Photo by S O C I A L . C U T on Unsplash

Wisdom narratives of suffering that highlight what’s gained can be crucial for meaning-making and healing, not only for individuals but for collective movements and communities toward structural change. I’ve seen this time and time again in mental health activism. Groups of trauma survivors, psychiatric survivors, and those deemed “mad” banning together to question what it means to be labeled ‘abnormal’ in an unjust society. Many have felt pride in experiences that would be deemed pathological, for example, that altered states of consciousness labeled as psychosis or mania were experiences that brought deep insight, powerful shifts in perspective and connection to something greater than themselves. Some diagnosed with depression feel their experiences help them to make necessary life changes or process grief that was buried. Others use language such as neurodivergence to describe their mental states.

Far from romanticizing suffering, many people who do not adopt wholesale all aspects of the biomedical/disease model of mental health issues find power in reframing such experiences as generative while also holding the complexity of pain. The Mad Pride Movement, which now has taken on different names within many communities was/is one of the most creative and powerful movements against psychiatric control. Aligning with disability studies, Mad Pride’s motto has been ‘nothing about us without us’ and it has led to more collaboration between lived experiencers and researchers and clinicians.

Finding what’s gained in addition to what’s lost can indeed help us make social and structural change.

Like O’Rourke, I too refrain from giving ‘false promises’ and notions of a happy ending in illness or pain because life is messy and it’s a myth that our minds and bodies reach some perfect ideal state and remain there. But I can’t deny that the illness and suffering I’ve experienced which defies boundaries of mind, body, and world, has taught me so much that I value.

Pain and illness have been ways that my body has spoken to me. I’ve learned to listen and continue to discern its subtle messages. I’ve unlearned much of modern ‘normalcy,’ and paved ways of living that work better for me and my body instead of forcing my body to fit a mould that wasn’t made for it. I know the complexities of what it takes to keep my body going and how hard the body works to find balance when devastated. I’ve unlearned giving my power away to so-called authorities. I am less ableist, less of a perfectionist, less certain, and more compassionate, humble, and open to the mystery. I’ve come to see the whole body-mind as a profound mystery and as holding innate wisdom that my rational mind can’t begin to comprehend.

Does this make pain ‘worth it’? I’m not so sure I can measure it that way. Would I ever try to push someone to adopt such meaning? No. But these learnings are part of a lived reality that have changed my life and cracked me open in ways I’d never want to take back. The grief lives alongside the wisdom as rightful partners in an uncertain world.

Indigenous Metaphors Beyond Control

One of the most troubling consequences of devaluing wisdom narratives of pain and illness is the notion that such convictions are only employed to feel a sense of control over one’s life. For example, O’Rourke writes about the common metaphor of autoimmune disease as ‘the body attacking itself,’ which some internalize as a mirror or outward manifestation of inner emotional turmoil: self-hate/self-blame, anger turned inward at the self, inauthenticity, perfectionism, unresolved emotional trauma, etc. - in other words, “the self destroying itself”. O’Rourke believes that asking “what is the message?” and finding meaning in such metaphors is a coping mechanism to gain control over an uncertain situation, and is often a way to pile on blame and shame: “patients tell themselves a story, painful though it might be, offers them a modicum of control - and the promise of both biological and spiritual healing.”

I don’t deny that I’ve met many who have used illness metaphors to individualize and blame themselves for issues that have complex structural and often intergenerational causes. I can even say I have dipped my own toe into the familiar pool of self-flagellation through over-identifying with autoimmunity and making it mean something about my capacity/incapacity. It’s right to be wary of this, and to question where we get our metaphors from. It’s crucial to undo the knot of individualism and the erasure of structural and sociopolitical roots of illness or pain (at the very least to ask: why are rates of autoimmunity skyrocketing in Western countries?). But to reject all illness metaphor or even the very idea that our emotional states affect the body is throwing the baby out with the bathwater.

It may be classically Western, or even North American, to create a society that drives the bodymind into the ground, devalues and strips us away from all that makes us whole, and then reinforces the idea that we are the ones to blame for the consequences (so that we buy our way out of the ‘problem’).

But metaphors of illness and the mirroring of the body and mind are not Western ideas, and in fact are quite ancient, valuable, and crucial for healing.

A friend of mine, Thabiso Mthimkhulu, an Eswatini healer, writes:

“For my Bantu ancestors, illness has always been a metaphor. That is how we heal.

In African Indigenous medicine, we believe an illness to be alive. It is a conversation, a relationship between healer and patient. Meaning is collectively determined. We speak to the energy of the illness. We talk directly to it. Sometimes we call that sickness, that energy, into our own body so it can speak for itself and tell us what it wants and needs. We understand illness to be holistic in its creation and manifestation — it is a part of body, mind, and spirit imbalance. Illness, in Indigenous worldviews, is a way that the body communicates about what is happening and what it needs.

Meaning-making around illness is culturally dependent. That is how something can be called an illness in one culture, but in another it can be perceived as a gift. Or how something is not considered to be a mental illness in a place where the people around you don’t view the “behaviors” as culturally out-of-alignment. One culture calls it schizophrenia, another calls it a healer. And all of the many intersections and in-betweens. Whose versions of reality are more true and correct?

Clinical Western medicine offers its own metaphor. It too functions as a specific story we are telling about the body. And those metaphors and explanations have been forced upon the world, specifically oppressed and colonized people.

Forcing a particular metaphor, a particular story, onto somebodies body or mind is what is violent — not the act of making meaning. Communal storytelling & culturally rooted ways of understanding our experiences is a powerful medicine; one that too many colonized & displaced people have lost access to.

Making meaning, in our own terms, with our own language and metaphor and stories, is the way of my ancestors. It’s the way of all indigenous people.

(See the post here)

To make meaning in pain or illness and see how the mind mirrors body and vice versa, how symbol and metaphor have a rightful place in the healing process, and reveal more than what’s gleaned with only biochemical language, is not to blame or shame.

Is it not telling that we, in western societies, can’t fathom the brilliance and value of illness metaphors except by virtue of control and blame? Is it not telling that we are so quick to reduce meaning-making to a coping strategy for those unable to grasp a cold hard biochemical ‘reality’. Is it not telling that we find it so hard to imagine that gain and loss, wisdom and grief, do not exist on opposite poles of experience? Rather, we are capable of holding brilliance, madness, wisdom, grief and everything in between.