Table of Contents
Introduction: The Day My World Cracked
For fifteen years, my job was to make sense of illness.
As a medical writer, I translated the dense language of clinical trials and epidemiological studies into clear, actionable advice for the public.
I wrote about managing symptoms, the importance of a positive mindset, and the seven essential steps to building a support system.
I was an expert on the map of sickness, but I had never set foot in the territory.
Then, one Tuesday afternoon in a sterile, over-lit examination room, the territory came for me.
The diagnosis—a progressive autoimmune condition—was delivered with clinical precision, a string of polysyllabic words that landed like stones, shattering the smooth surface of the life I knew.
In that moment, I became a citizen of the very country I had only ever observed from a distance.
My professional training kicked in immediately.
I would manage this.
I had the tools, the knowledge, the checklists.
I would be a model patient.
I dutifully followed all the “standard advice” I had so confidently dispensed to others for years.
I built my support system, meticulously organized my medications, and practiced mindfulness.1
Most of all, I clung to the doctrine of positivity.
I would not be a victim.
I would find the silver lining.
I would be strong.
But the advice, which had always seemed so sensible on the page, felt hollow, like a flimsy shield against a relentless siege.
The grief was an ocean, and my positive affirmations were a thimble.
The fatigue was a physical weight, and no amount of self-care could lift it.
The identity I had built—capable, independent, in control—was crumbling, and the standard toolkit offered no way to rebuild it.
The breaking point came on a perfectly ordinary Thursday.
I was standing in my kitchen, trying to summon the energy to make dinner, when a wave of pain and exhaustion washed over me so completely that I had to grip the counter to stay upright.
In that moment, the immense effort of pretending—pretending to be positive, pretending to be coping, pretending I wasn’t fundamentally broken—became too much to bear.
The carefully constructed facade shattered, and I was left with the raw, terrifying truth: I was lost.
The map I had spent my career drawing was useless because it didn’t show the most important feature of the landscape: the profound, soul-deep fracture that a chronic illness leaves in its wake.
The standard advice had failed me because it was based on a flawed premise.
It was designed to patch over the cracks, to hide the damage, to pretend the break never happened.
But my life had broken.
The person I was before that Tuesday afternoon was gone, and no amount of positive thinking could bring her back.
My failure wasn’t in my inability to follow the advice; the failure was in the advice itself.
It offered no path for someone who was truly broken.
This realization sent me on a different kind of search.
I stopped looking for ways to erase the damage and started looking for a way to live with it.
I needed a new philosophy, a new map.
My central question became a desperate plea: What if healing isn’t about pretending you’re not broken? What if it’s about finding strength in the brokenness? The answer, when it came, arrived not from a medical journal or a psychology textbook, but from an ancient Japanese art form centered on a simple, shattered ceramic bowl.
Part I: The Unseen Fracture: Why We Grieve the Person We Were
Before we can learn to mend, we must first understand the nature of the break.
A chronic illness diagnosis is a seismic event that fractures not just the body, but the very foundations of the self.
It is a slow-motion trauma, a continuous unfolding of loss that the standard language of “coping” and “management” fails to capture.
To truly grasp the psychological impact, we must look beyond the symptoms and into the deep, unseen fractures of identity, grief, and the profound harm caused by a world that demands we pretend we are whole.
Section 1.1: The Great Unraveling: Charting the Loss of Self
A chronic illness diagnosis is a profound identity crisis.
It is the moment you are handed a new, unwanted label—”patient,” “sufferer,” “chronically ill”—that threatens to eclipse every other part of who you are.
The life you had planned, the future you had assumed, is abruptly called into question.
This is not merely a medical event; it is the great unraveling of the self.
The first things to go are often the roles and activities that once defined you.
For me, the identity of “writer” became complicated by brain fog and fatigue, and the “active person” who loved hiking and travel was grounded by pain and physical limitations.
This experience is universal.
An individual’s self-concept is often deeply intertwined with their work, hobbies, and social roles.3
When illness makes participation in these activities impossible, it creates a profound sense of loss and grief, leading to frustration, isolation, and despair.3
The person who was an endurance athlete finds they can no longer climb a hill; the professional can no longer work in their chosen field; the parent struggles to keep up with their children.4
Each limitation is a small death, a chipping away at the statue of the self you thought you knew.
This leads to a unique and challenging form of grief.
Unlike the grief that follows a single, definitive loss, the grief of chronic illness is perpetual and non-linear.1
There is no identifiable end, only a series of emotional highs and lows dictated by the unpredictable pattern of symptoms and treatments.4
A good day can be followed by a week of debilitating pain, re-triggering the entire cycle of grief.
You grieve the body you once had, the career you lost, the independence you cherished, and the future you envisioned.1
This is chronic grief: a constant, recurring experience of intense emotional reactions to a loss that never fully resolves.1
While clinically distinct from Prolonged Grief Disorder—a condition characterized by persistent, disabling grief following a bereavement—the experience of chronic illness shares a similar emotional texture of a loss that remains intensely present, disrupting one’s identity and sense of a meaningful future.6
This psychological turmoil is not happening in a vacuum; it is deeply intertwined with the body’s physical state.
The relationship between chronic illness and mental health is bidirectional and cyclical.
The stress and trauma of living with a chronic condition significantly increase the risk of developing depression and anxiety.
Up to one-third of people with a serious medical condition show symptoms of depression, a rate two to three times higher than in the general population.7
For those with autoimmune diseases, the numbers are even starker, with some studies suggesting that up to 50% of patients also experience depression or anxiety.8
This connection is not just psychological; it is physiological.
The chronic stress of managing an illness can alter brain chemistry and hormone levels, triggering depression.9
In turn, depression feeds back into the physical illness.
It can intensify the perception of pain, increase fatigue, and disrupt sleep.7
Furthermore, the neurobiological pathways involving serotonin and norepinephrine, which are dysregulated in depression, are the same pathways that modulate pain.11
The inflammation associated with depression can also exacerbate the inflammatory processes of many chronic, particularly autoimmune, diseases.12
This creates a devastating feedback loop: the illness causes psychological distress, and the distress worsens the physical symptoms of the illness.13
It becomes clear, then, that the immense psychological distress experienced by those with chronic illness is not a sign of weakness or a failure to cope adequately.
It is a deeply logical and predictable human response to the fundamental and ongoing loss of one’s physical integrity, identity, and sense of a predictable future.
The high prevalence of depression and anxiety is not an anomaly; it is the statistical norm, reflecting a systemic human reaction to a profound and unrelenting fracture of the self.
This distress is not a character flaw to be overcome with positive thinking; it is a core symptom of the wound itself.
Section 1.2: The Tyranny of “Just Be Positive”: When “Help” Becomes Harmful
In the face of this profound unraveling, our culture offers a simple, ubiquitous, and deeply damaging prescription: be positive.
This well-intentioned advice, however, often manifests as a form of “toxic positivity”—the relentless pressure to maintain an optimistic facade while denying, minimizing, or invalidating authentic negative emotions.15
For someone navigating the chronic grief and identity loss of illness, this pressure is not just unhelpful; it is actively harmful.
It adds a second layer of suffering: the guilt and shame of not being able to feel the “right” way about a legitimately terrible situation.17
When a friend says, “Look on the bright side,” or “Everything happens for a reason,” the implicit message is that your pain, fear, and sadness are inappropriate or a matter of poor perspective.19
This invalidation can be profoundly isolating, forcing the person who is suffering to hide their true feelings to avoid being shamed or lectured.15
It short-circuits the grieving process, which requires acknowledging and moving through difficult emotions.
Toxic positivity can trap a person in a state of denial, preventing them from ever truly accepting their diagnosis and its implications.15
This burden of invalidation is magnified for the millions living with invisible illnesses.
Conditions like fibromyalgia, autoimmune disorders, and chronic fatigue syndrome often have no outward signs.21
To the outside world, the person looks fine.
This discrepancy between external appearance and internal reality creates a unique and exhausting psychological burden.23
The constant refrain of “But you don’t look sick” is not a compliment; it is a microaggression that communicates disbelief and skepticism.21
This forces the individual into a perpetual state of having to justify their reality, to prove that their pain is real, that their fatigue is debilitating, and that their limitations are not a matter of laziness or lack of willpower.23
Over time, this external disbelief can be internalized, leading to profound self-doubt, guilt, and a feeling of being an imposter in one’s own suffering.23
The most damaging form of this invalidation occurs within the healthcare system itself, a phenomenon known as “medical gaslighting.” This is the experience of having one’s symptoms and concerns dismissed, downplayed, or attributed to psychological factors like anxiety or stress by medical professionals.25
Patient stories are filled with harrowing accounts of being told their pain is “all in their head,” their symptoms are “too rare” to be possible, or that they are simply “being dramatic”.27
This experience is particularly common for women, people of color, and those with complex, multi-systemic illnesses that defy easy categorization.26
Medical gaslighting is not just poor bedside manner; it is a systemic failure that can delay accurate diagnosis for years, even decades, leading to irreversible disease progression and profound psychological trauma.13
It erodes trust in the very system meant to provide care, leaving patients feeling helpless, unheard, and utterly alone.26
When we connect these phenomena—the well-meaning but harmful platitudes from friends, the societal disbelief in invisible suffering, and the systemic dismissal from medical professionals—a larger pattern emerges.
The relentless pressure to “be positive” and the dismissal of complex, incurable suffering are not just a series of individual failings.
They function as a broad, cultural defense mechanism.
The reality of chronic, unpredictable, and incurable illness is deeply uncomfortable for a society that values control, predictability, and simple solutions.
It challenges the comforting illusion of a just world where good health is a reward for right living.
By insisting on positivity or dismissing the illness as “psychosomatic,” the healthy observer—be it a friend, a family member, or even a doctor—is often protecting themselves from their own feelings of helplessness, anxiety, and existential dread.16
The patient’s authentic experience is sacrificed to maintain the observer’s comfort.
The psychological burden of invalidation, shame, and self-doubt that is placed upon the person with the illness is a direct consequence of society’s own inability to cope with the messy, uncontrollable reality of chronic disease.
To navigate this landscape of invalidation, it is crucial to have tools to recognize harmful language and reframe the conversation in a way that honors one’s experience while setting healthy boundaries.
| Common Unhelpful Phrase | The Hidden Invalidation | A More Compassionate Alternative |
| “Everything happens for a reason.” | “Your suffering is part of a grand plan, so you shouldn’t be upset.” | “This seems so random and unfair. I’m sorry you have to go through this.” |
| “Just be positive!” | “Your negative feelings are a choice and a personal failing.” | “It’s okay to not be okay. I’m here to listen, whatever you’re feeling.” |
| “But you look so good!” | “I don’t believe you’re really sick because I can’t see it.” | “I know how hard you work to manage things that aren’t visible. How are you really doing today?” |
| “At least it’s not [worse illness].” | “Your suffering isn’t valid because someone else has it worse.” | “I can’t imagine how difficult this must be for you.” |
Part II: The Kintsugi Epiphany: Mending with Gold
My search for a better way to live with my fractured self led me far from the world of medical journals and into the quiet, contemplative world of Japanese aesthetics.
It was there, in the study of ancient crafts, that I stumbled upon my unlikely teacher: a broken ceramic bowl.
Section 2.1: An Unlikely Teacher: What a Broken Japanese Bowl Taught Me About Healing
I discovered Kintsugi, which translates to “golden joinery.” It is the centuries-old Japanese art of repairing broken pottery.
But unlike Western methods of repair that seek to hide the damage and make the object look as if it were never broken, Kintsugi does the opposite.
The artisans meticulously reassemble the broken pieces using a special lacquer mixed with powdered gold, silver, or platinum.29
The result is that the cracks are not concealed; they are illuminated.
The lines of breakage become a central, beautiful feature of the object’s design.
The philosophy behind Kintsugi is what struck me with the force of a revelation.
It is built on the idea that an object is more beautiful, more valuable, and stronger for having been broken.31
The damage is not a source of shame to be hidden away.
It is an integral part of the object’s history, a testament to its resilience, a story to be honored and displayed.30
The golden seams don’t just repair the object; they transform it into something new and unique.
In that moment, everything shifted.
For months, I had been trying to hide my own cracks.
I had been fighting a losing battle to glue myself back together so perfectly that no one would ever know I had been broken.
I was treating my illness as a shameful flaw that had rendered me “less than” the person I was before.
Kintsugi offered a radical, compassionate alternative.
It gave me a new metaphor for healing.
What if my illness wasn’t the end of my story, but a defining chapter? What if the goal wasn’t to erase the break, but to mend it with gold? The idea that I could not only heal but become more beautiful because of my brokenness was the first glimmer of authentic hope I had felt since my diagnosis.
It was a paradigm shift that moved me from a mindset of loss and deficit to one of transformation and potential.
Section 2.2: Introducing the Kintsugi Mindset: A New Paradigm for Resilience
The Kintsugi philosophy offers more than just a beautiful metaphor; it provides a powerful and actionable framework for navigating the psychological terrain of chronic illness.
It directly confronts the Western cultural obsession with perfection and flawlessness, which fuels so much of the shame and stigma surrounding illness and disability.30
The Kintsugi Mindset is a new paradigm for resilience, one that is not about returning to a past state of wholeness, but about creating a new, more authentic, and more resilient self.
This approach fundamentally redefines what it means to be resilient.
The common definition of resilience is the ability to “bounce back” from adversity, to return to a previous state of functioning.34
For someone with a chronic illness, this model is a recipe for frustration and failure.
There is no “bouncing back” to a pre-illness self; that self is gone.1
The break is permanent.
The Kintsugi philosophy provides a more compassionate and realistic model: resilience is not about bouncing back, but about
integrating forward.
It is the capacity to absorb the disturbance of illness, gather the fractured pieces of one’s life and identity, and reconfigure them into a new whole that not only incorporates the break but is strengthened by it.
This is not recovery from the break, but reconstruction with the break.
This new paradigm can be broken down into five core principles, derived directly from the physical process of Kintsugi and mapped onto established psychological concepts.
These principles provide a step-by-step guide for moving from the initial shattering to a new, integrated way of being.
They form the practical core of Kintsugi Living:
- Acknowledge the Break: This is the courageous first step of accepting the reality of the illness and the losses it has brought. It is the cessation of the exhausting war against what is.
- Gather the Pieces: This is the process of taking a clear-eyed inventory of the self—what has been lost, what remains, and what new capacities have emerged in the wake of the break.
- Apply the Lacquer: This represents the slow, patient, and mindful work of mending. It is a new form of self-care, grounded in compassion and attunement rather than checklists and performance.
- Illuminate the Scars with Gold: This is the transformative step of finding meaning, purpose, and wisdom in the most painful aspects of the illness experience. It is the process of turning suffering into strength.
- Display the Mended Vessel: This is the final stage of living an authentic, integrated life, where the illness is no longer a source of shame but an honored part of one’s unique story, shared in a way that can help and heal others.
Part III: The Five Principles of Kintsugi Living: A Practical Framework
The Kintsugi Mindset is not an abstract philosophy but a practical path.
Each of its five principles corresponds to a crucial stage in the psychological journey of living with chronic illness, and each is supported by evidence-based therapeutic approaches.
This section will break down each principle, offering not just the “what” and the “why,” but the “how”—concrete tools and exercises to help you mend your own life with gold.
Section 3.1: Principle 1: Acknowledge the Break (Radical Acceptance)
The Kintsugi artisan cannot begin to mend a bowl until they first accept that it is broken.
They must look at the fracture, in all its jagged reality, without wishing it were otherwise.
For us, this is the principle of radical acceptance.
It is the conscious, courageous choice to stop fighting the reality of our illness and its consequences.35
This is not a passive resignation or giving up; it is the active cessation of an exhausting and unwinnable war against what Is. The Buddhist teacher Shinzen Young captured this with a simple formula: Suffering = Pain x Resistance.35
While we may not be able to eliminate the pain of our illness, we can dramatically reduce our suffering by letting go of our resistance to it.
The clinical embodiment of this principle is found in Acceptance and Commitment Therapy (ACT).
ACT is a form of psychotherapy that helps individuals stop avoiding, denying, and struggling with their inner emotions and, instead, accept that these deeper feelings are appropriate responses to certain situations.37
The core goal of ACT is not to eliminate difficult feelings or symptoms, but to foster “psychological flexibility”—the ability to be present with what life brings and to move toward valued behavior.38
The focus shifts from the impossible task of controlling pain to the possible and empowering task of building a rich, full, and meaningful life
alongside the pain.35
Here are some practical exercises to cultivate this foundational skill of acceptance:
- Dropping the Rope: Imagine you are in a tug-of-war with a monster. The monster is your illness, your pain, your negative thoughts. You pull with all your might, but the monster is stronger, and it’s pulling you toward a pit. You’re exhausted, and you’re losing. What can you do? The answer is simple, but not easy: drop the rope. The struggle is what’s pulling you toward the pit. When you stop pulling, you are no longer in a battle. The monster is still there, but you are free to turn your attention and energy elsewhere. This metaphor illustrates the core of acceptance: ending the struggle with uncontrollable internal experiences.37
- The Dichotomy of Control: This ancient Stoic exercise is profoundly practical for chronic illness. Draw a circle on a piece of paper. Inside the circle, write down all the things related to your illness that are within your control: your response to your symptoms, the questions you ask your doctors, your choice to be kind to yourself, the values you want to live by. Outside the circle, write down everything that is not in your control: the progression of the disease, the presence of pain or fatigue on any given day, the side effects of medication, how other people react to your illness.40 The goal is to consciously shift your energy and focus from the things outside the circle to the things inside it. This practice fosters a sense of agency and peace by focusing your efforts where they can actually make a difference.
- Observing “Clean Pain” vs. “Dirty Pain”: ACT makes a useful distinction between “clean pain” and “dirty pain”.35 Clean pain is the direct, unavoidable physical sensation or emotional hurt caused by your condition. Dirty pain is the extra layer of suffering we create with our minds—the judgments (“This is unfair,” “I can’t stand this”), the catastrophic predictions (“This will never end,” “My life is over”), and the self-criticism (“I should be able to handle this better”). The practice is to use mindfulness to simply observe the clean pain without adding the layer of dirty pain. Notice the physical sensation of pain as if you were a curious scientist: Where is it? What is its temperature? Does it pulse or is it steady? By observing it without judgment, you separate the raw sensation from the story you tell about it, which often makes it more bearable.41
Section 3.2: Principle 2: Gather the Pieces (Narrative Reconstruction)
Once the break is acknowledged, the Kintsugi artisan carefully gathers every shard and fragment of the broken vessel.
They take a full inventory of what has been lost and what remains.
For us, this is the process of narrative reconstruction.
It involves taking honest stock of our new reality—the new limitations, the changed abilities, the parts of our old self that are gone, the parts that remain, and the unexpected strengths that have emerged from the rubble.
The most powerful tool for this process is Narrative Therapy.
Developed by therapists Michael White and David Epston, its foundational principle is revolutionary: “The person is not the problem; the problem is the problem”.43
This approach helps individuals separate their identity from the challenges they face, empowering them to rewrite their life stories in a way that is not dominated by the “problem”.43
Here are key narrative techniques to help you gather your pieces and begin to re-author your life:
- Externalizing the Illness: This is the practical application of separating the person from the problem. It involves changing the language you use to think and talk about your illness. Instead of saying, “I am a sick person” or “I am my fibromyalgia,” you learn to say, “I am a person living with fibromyalgia” or “The pain is making things difficult today”.44 This simple linguistic shift creates profound psychological distance. The illness becomes an external force that you have a
relationship with—one you can negotiate with, stand up to, or manage—rather than an intrinsic, unchangeable part of your core identity. This restores a sense of self and agency.43 - Mapping the Problem’s Influence: This exercise involves exploring the specific ways the illness (the externalized problem) has impacted various areas of your life. You might create a map or a list detailing its effects on your work, relationships, hobbies, and mood. The key is to see these effects as the actions of an external force, not as personal failings. For example, “The fatigue has tried to steal my social life,” or “The brain fog has attempted to undermine my confidence at work”.43
- Identifying “Unique Outcomes”: After mapping the problem’s influence, the next step is to search for “unique outcomes” or “sparkling moments.” These are any times, no matter how small or fleeting, when you did not let the illness dictate your actions or feelings.43 Did you manage to go for a short walk on a day when the fatigue was telling you to stay in bed? Did you find a way to connect with a friend even when pain made leaving the house impossible? Did you practice a moment of self-compassion when the inner critic was telling you that you weren’t doing enough? These unique outcomes are the building blocks of a new story. They are evidence that the illness’s influence is not total and that you possess skills, values, and strengths that it cannot touch. The work of re-authoring involves finding these sparkling moments and weaving them together to create a new, preferred narrative—a story of resilience, creativity, and strength in the face of adversity.43
Section 3.3: Principle 3: Apply the Lacquer (Mindful Mending)
The process of applying the urushi lacquer in Kintsugi is slow, deliberate, and requires immense patience.
Each layer must be applied carefully and allowed to cure fully before the next is added.
This patient, meticulous work is the perfect metaphor for a new kind of self-care—one that is not about performative wellness or adding more tasks to an already overwhelming to-do list, but about the slow, compassionate work of mindful mending.
Much of the conventional self-care advice offered to people with chronic illness comes in the form of checklists: eat a healthy diet, get enough sleep, exercise, meditate, join a support group.2
While none of this advice is inherently bad, it can feel like another set of demands on an already depleted system, another area in which to fail.
Authentic self-care, or mindful mending, is not about what you
do, but about the quality of attention and compassion you bring to your actions.
It is about listening deeply to the needs of your body and mind in each moment and responding with kindness rather than judgment.49
Here are some ways to practice mindful mending:
- Embrace Pacing and Honor Your Energy Envelope: Many people with chronic illness live in a “boom and bust” cycle, overexerting themselves on good days only to pay for it with days of recovery. Mindful mending involves learning to respect your body’s limits. This can be conceptualized through the “Spoon Theory,” which posits that everyone has a limited number of “spoons” (units of energy) each day, and people with chronic illness start with fewer spoons and must budget them carefully.16 Pacing is the practice of consciously budgeting this energy, breaking down tasks into smaller chunks, and building in rest before you become exhausted. It is an act of profound self-respect, honoring your body’s reality rather than pushing it past its breaking point.
- Cultivate Radical Self-Compassion: The inner critic is often the loudest voice in chronic illness, fueling feelings of guilt for not being able to do more and shame for being a “burden.” Self-compassion is the antidote. It involves treating yourself with the same kindness and understanding you would offer a dear friend who was suffering.1 When a flare-up forces you to cancel plans, instead of berating yourself, you can practice saying, “This is a moment of suffering. Suffering is a part of life. May I be kind to myself in this moment.” This practice, developed by psychologist Kristin Neff, directly counters the isolation and self-judgment that create so much “dirty pain.”
- Reframe Movement and Nutrition as Acts of Kindness: The pressure to exercise and eat “perfectly” can be immense. Mindful mending reframes these activities. Movement is not about hitting a certain target or pushing through pain; it’s about finding gentle ways to connect with and nourish your body, whether that’s a few minutes of gentle stretching, a short walk, or simply moving from the bed to the sofa. Similarly, nutrition is not about restrictive diets and deprivation; it’s about providing your body with the fuel it needs with a sense of kindness and appreciation, free from guilt or shame. The focus shifts from external goals to the internal experience of caring for a body that is doing its best under difficult circumstances.
Section 3.4: Principle 4: Illuminate the Scars with Gold (Transforming Pain into Purpose)
This is the most transformative step in the Kintsugi process.
The artisan does not use a clear, invisible glue to hide the repair.
They deliberately choose gold, a precious material, to fill the cracks.
The act of highlighting the scars declares that the history of the object, including its breaking, is what makes it uniquely beautiful.29
This principle is about finding the “gold” in our own experience of brokenness—the unexpected wisdom, strength, and purpose that can emerge from our deepest suffering.
This is not a form of toxic positivity that pretends the pain isn’t real.
It is the opposite.
It is about looking directly at the most painful, difficult parts of the journey and asking what they have taught us.
This aligns with the psychological concept of post-traumatic growth, the well-documented phenomenon where people who endure significant adversity can experience positive psychological changes.
These changes often include a greater appreciation for life, a shift in priorities, warmer and more intimate relationships, a stronger sense of personal strength, and the recognition of new possibilities or a new path in life.
The trauma doesn’t just get survived; it becomes a catalyst for profound growth.
Finding your “gold” is a deeply personal process of reflection.
Here are some questions to guide your search:
- What new strengths have you discovered? Living with chronic illness demands the cultivation of immense patience, courage, and resilience. Have you found reserves of strength you never knew you possessed? Have you become a fierce advocate for yourself in a way you never had to be before?
- How has this experience clarified your values? Chronic illness has a way of stripping away the non-essential. It forces you to confront what truly matters. Has it made you re-evaluate your priorities? Has it clarified what a “good life” really means to you, separate from societal expectations of productivity and achievement? This process of value clarification is a cornerstone of ACT, which encourages us to use our values as a compass to guide our actions, especially when things are difficult.38
- Has this experience deepened your empathy? To suffer is to be given a profound, albeit unwanted, insight into the nature of the human condition. Has your own pain made you more compassionate and understanding toward the suffering of others? This newfound empathy is a form of gold, a precious resource that can enrich your relationships and your connection to the world.
- What meaning can you create from this? This is not about finding a pre-ordained “reason” for your illness, which can be a form of toxic positivity. It is about actively creating meaning. Can you use your experience to help others who are newly diagnosed? Can you use your story to raise awareness? Can you find a new creative outlet to express your journey? Transforming personal pain into an act of service or creation is the ultimate alchemy of turning lead into gold.
Section 3.5: Principle 5: Display the Mended Vessel (Living a New, Integrated Identity)
A Kintsugi bowl is not meant to be hidden away on a high shelf.
It is meant to be used, its golden seams on full display.
The final principle of Kintsugi Living is about integrating your mended self back into the world.
It is about living an authentic life where the illness and its scars are not a shameful secret, but an accepted and honored part of your unique and beautiful story.
This final stage is an act of courage that unfolds in two key domains: self-advocacy and community connection.
- The Power of Self-Advocacy: Displaying your mended vessel means no longer accepting invalidation. It means showing up in medical appointments and social situations as the world’s foremost expert on your own experience.5 It’s about calmly and firmly correcting the doctor who dismisses your pain, educating the family member who says, “But you look so good,” and setting boundaries to protect your energy and emotional well-being. This personal act of self-advocacy is part of a larger, powerful social movement. The patient advocacy movement, which grew out of the civil rights and women’s health movements, has been instrumental in shifting the power dynamic in medicine and demanding that patients’ voices be heard and respected.51 When you advocate for yourself, you are standing on the shoulders of generations of activists who fought for the right to be seen, believed, and treated with dignity.
- Finding Your Community: A core wound of chronic illness is the profound sense of isolation—the feeling that no one can possibly understand what you are going through.3 The final step of healing involves breaking this isolation by finding your community. This could be a professionally-facilitated support group where licensed mental health professionals provide guidance and structure 55, or it could be an online forum or social network where you can connect with thousands of others who share your diagnosis and experiences.57 In these spaces, you don’t have to explain or justify your reality. You are immediately understood. Sharing your story in a safe and supportive community is the ultimate act of displaying your mended vessel. It is in seeing the beautiful, golden scars on other people’s vessels that we learn to fully appreciate our own.
- Sharing Your Story as an Act of Service: The final, and perhaps most powerful, way to display your mended self is to share your story. When you have navigated the darkness and found a way to mend, your experience becomes a map for others who are still lost.60 Sharing your journey—your struggles, your insights, your “gold”—transforms your personal suffering into a beacon of hope. It is the ultimate act of Kintsugi, using the precious material forged in your own breaking to help mend the world around you.
Conclusion: A Strength Forged in the Breaking
I still have the autoimmune disease.
There are days when the pain is loud and the fatigue is a heavy cloak.
The break is, and always will be, a part of my body’s history.
But I no longer see myself as a broken person.
I think of that Thursday in my kitchen, the day my world cracked and the flimsy shield of positivity shattered at my feet.
I see now that this moment of collapse was not an end, but a necessary beginning.
It was the moment I stopped trying to be whole and started learning how to be mended.
The journey of chronic illness is a profound psychological odyssey.
It forces us to confront the deepest questions of identity, loss, and meaning.
The conventional maps offered by our culture—maps that prize positivity, perfection, and the concealment of weakness—are not only useless in this territory; they lead us further into the wilderness of shame and isolation.
They ask us to deny the very reality of our own fracture.
The Kintsugi Mindset offers a new map, a new way forward.
It gives us permission to grieve, to be angry, to feel the full weight of our losses.
It teaches us to stop the exhausting war against our own bodies and to begin the patient, compassionate work of mending.
It shows us that resilience is not about erasing our scars, but about illuminating them with gold.
It reframes our experience not as a story of deficit and decline, but as one of transformation and unexpected beauty.
Living with a chronic illness is a continuous process of breaking and mending.
But with this new framework, each new crack is not a catastrophe, but an opportunity to apply the lacquer of self-compassion and the gold of newfound wisdom.
You are not broken despite your illness.
You have the profound and courageous opportunity to become stronger, more empathetic, and more beautiful because of how you choose to mend.
Your life, with all its intricate, golden seams, is not a tragedy.
It is a masterpiece of resilience, a testament to the incredible strength that can only be forged in the breaking.
Works cited
- Chronic Illness Diagnosis: Grieving Yourself and Coping with the Loss of Self-Identity, accessed August 6, 2025, https://www.onyourmindcounselling.com/chronic-illness-diagnosis-grieving-yourself-and-coping-with-the-loss-of-self-identity/
- Management of chronic conditions | healthdirect, accessed August 6, 2025, https://www.healthdirect.gov.au/management-of-chronic-conditions
- Chronic Illness, Identity, And Self-Worth, accessed August 6, 2025, https://www.drginnykington.com/all-articles/chronic-illness-identity-and-self-worth
- The Grief and Loss of Living With a Chronic Illness – CSL, accessed August 6, 2025, https://www.csl.com/we-are-csl/vita-original-stories/2024/the-grief-and-loss-of-living-with-a-chronic-illness
- My Chronic Illness Doesn’t Define Me – How I Conquer It Does …, accessed August 6, 2025, https://recwell.wisc.edu/2020/03/02/my-chronic-illness-doesnt-define-me-how-i-conquer-it-does/
- Psychiatry.org – Prolonged Grief Disorder – American Psychiatric Association, accessed August 6, 2025, https://www.psychiatry.org/patients-families/prolonged-grief-disorder
- Coping With Chronic Illnesses and Depression – WebMD, accessed August 6, 2025, https://www.webmd.com/depression/chronic-illnesses-depression
- Minorities, Autoimmune Disease and Mental Health – Autoimmune …, accessed August 6, 2025, https://autoimmune.org/minorities-autoimmune-disease-and-mental-health/
- Chronic Pain and Mental Health, accessed August 6, 2025, https://mhanational.org/resources/chronic-pain-and-mental-health/
- Understanding the Link Between Chronic Disease and Depression – National Institute of Mental Health (NIMH), accessed August 6, 2025, https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health
- Pain and Psychology—A Reciprocal Relationship – PMC – PubMed Central, accessed August 6, 2025, https://pmc.ncbi.nlm.nih.gov/articles/PMC5472077/
- Autoimmune Diseases and Psychotic Disorders – Frontiers, accessed August 6, 2025, https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2019.00131/full
- Managing Mental Health with an Autoimmune Disease, accessed August 6, 2025, https://www.autoimmuneinstitute.org/articles/managing-mental-health-with-an-autoimmune-disease/
- Relationship between chronic diseases and depression: the mediating effect of pain – PMC, accessed August 6, 2025, https://pmc.ncbi.nlm.nih.gov/articles/PMC8419946/
- Multiple Sclerosis Foundation – MS and Toxic Positivity – MS Focus Magazine, accessed August 6, 2025, https://www.msfocusmagazine.org/Magazine/Magazine-Items/Exclusive-Content/2023/MS-and-Toxic-Positivity
- Toxic Positivity: Recognizing It and Preserving Your Spoons – Chronic Pain Partners, accessed August 6, 2025, https://www.chronicpainpartners.com/toxic-positivity-recognizing-it-and-preserving-your-spoons/
- The ‘Tyranny’ of Positive Thinking Can Threaten Your Health and Happiness – Newsweek, accessed August 6, 2025, https://www.newsweek.com/2016/09/23/positive-thinking-myth-498447.html
- The Danger of Toxic Positivity in Serious Illness Support – Crossroads Hospice, accessed August 6, 2025, https://www.crossroadshospice.com/hospice-palliative-care-blog/2023/may/26/the-danger-of-toxic-positivity-in-serious-illness-support/
- Navigating Well-Meaning but Harmful Advice About Your Chronic Illness, accessed August 6, 2025, https://www.emilywhitish.com/blog/toxic-positivity-chronic-illness
- MS and Toxic Positivity – Multiple Sclerosis Foundation, accessed August 6, 2025, https://msfocus.org/Magazine/Magazine-Items/Exclusive-Content/2023/MS-and-Toxic-Positivity
- Understanding Invisible Disabilities: The Mental Health Impact of Feeling Unseen, accessed August 6, 2025, https://www.wpatherapy.com/post/understanding-invisible-disabilities-the-mental-health-impact-of-feeling-unseen
- What Is an Invisible Illness—and How Do You Cope? – Health, accessed August 6, 2025, https://www.health.com/condition/autoimmune-disease/invisible-illness
- The Challenges of Living with an Invisible Illness | Psychology Today, accessed August 6, 2025, https://www.psychologytoday.com/us/blog/stroke-of-awareness/202104/the-challenges-of-living-with-an-invisible-illness
- Invisible Illness And Identity Are Deeply Connected | THRIVE Project, accessed August 6, 2025, https://thrivabilitymatters.org/invisible-illness-and-identity-are-deeply-connected/
- Overcoming Medical Gaslighting: How Five Patients Broke Through – Health Central, accessed August 6, 2025, https://www.healthcentral.com/chronic-health/medical-gaslighting/breakthroughs
- Medical Gaslighting in Chronic Illness | The EDS Clinic, accessed August 6, 2025, https://www.eds.clinic/articles/medical-gaslighting
- How Medical Gaslighting Nearly Took My Life – Rare Disease Day 2026, accessed August 6, 2025, https://www.rarediseaseday.org/heroes/how-medical-gaslighting-nearly-took-my-life/
- Medical Gaslighting Examples – Stories From Real Patients, accessed August 6, 2025, https://bearable.app/medical-gaslighting-examples/
- The Art of Kintsugi: A Precious Metaphor for the Wounded Healer …, accessed August 6, 2025, https://www.fullcirclecounseling.com/blog/the-art-of-kintsugi-a-precious-metaphor-for-the-wounded-healer
- How Kintsugi Teaches the Value of Imperfection – MIBlueDaily, accessed August 6, 2025, https://www.bcbsm.mibluedaily.com/stories/mental-health/how-kintsugi-teaches-the-value-of-imperfection
- The Japanese art form of kintsugi: embracing the imperfections of life | Mayo Clinic Connect, accessed August 6, 2025, https://connect.mayoclinic.org/blog/living-with-mild-cognitive-impairment-mci/newsfeed-post/the-japanese-art-form-of-kintsugi-embracing-the-imperfections-of-life/
- We’re filling the gaps in mental healthcare. – Kintsugi, accessed August 6, 2025, https://www.kintsugihealth.com/about
- Mending While Still Broken, accessed August 6, 2025, https://brokenandmended.org/mending-while-still-broken/
- Editorial: Resilience in Chronic Disease – Frontiers, accessed August 6, 2025, https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2022.846370/full
- How to Cope with a Chronic Health Condition with Acceptance and Commitment Therapy (ACT) – Penny Lewis Psychologist Brisbane, accessed August 6, 2025, https://www.penlewis.com/my-articles/how-to-cope-with-a-chronic-health-condition-with-acceptance-and-commitment-therapy-act
- What Is Acceptance? | Practical Approaches For Chronic Illness – Re-origin, accessed August 6, 2025, https://www.re-origin.com/articles/what-is-acceptance-practical-approaches
- Acceptance & commitment therapy | PainGuide | University of Michigan, accessed August 6, 2025, https://painguide.com/pain-care/professional-care/therapies/act/
- Technology-supported Acceptance and Commitment Therapy for Chronic Health Conditions: A Systematic Review and Meta-analysis, accessed August 6, 2025, https://pmc.ncbi.nlm.nih.gov/articles/PMC8712459/
- Acceptance and Commitment Therapy (ACT) for Chronic Pain, accessed August 6, 2025, https://integrativepainscienceinstitute.com/acceptance-and-commitment-therapy-act-for-chronic-pain/
- Stoicism and Pain Management: 4 Techniques Practiced By Marcus …, accessed August 6, 2025, https://dailystoic.com/stoicism-and-pain-management/
- Could you offer some stoic wisdom for dealing with physical pain? : r/Stoicism – Reddit, accessed August 6, 2025, https://www.reddit.com/r/Stoicism/comments/lwewem/could_you_offer_some_stoic_wisdom_for_dealing/
- Stoic Advice on Health Problems & Illness: Ask Marcus Aurelius, accessed August 6, 2025, https://www.stoicsimple.com/stoic-advice-on-health-problems-illness-ask-marcus-aurelius/
- 19 Best Narrative Therapy Techniques & Worksheets [+PDF], accessed August 6, 2025, https://positivepsychology.com/narrative-therapy/
- Narrative Therapy | Psychology Today, accessed August 6, 2025, https://www.psychologytoday.com/us/therapy-types/narrative-therapy
- Considering narrative therapy in palliative care practice – Blinderman, accessed August 6, 2025, https://apm.amegroups.org/article/view/116071/html
- Pain, Palliative Care and End-of-Life SIG: The Impact of Narrative Therapy in Shaping End-of-Life Experiences – AOSW, accessed August 6, 2025, https://aosw.org/newsletter-article/pain-palliative-care-and-end-of-life-sig-the-impact-of-narrative-therapy-in-shaping-end-of-life-experiences/
- Managing long-term illness and chronic conditions | Better Health Channel, accessed August 6, 2025, https://www.betterhealth.vic.gov.au/health/servicesandsupport/managing-long-term-illness-and-chronic-conditions
- Chronic Illness and Mental Health: 9 Tips for Self-Care – Mended Hearts, accessed August 6, 2025, https://mendedhearts.org/chronic-illness-and-mental-health-9-tips-for-self-care/
- Navigating the Challenges of Overcoming Anxiety with Chronic Illness, accessed August 6, 2025, https://rachellebloksberg.com/navigating-the-challenges-of-overcoming-anxiety-with-chronic-illness/
- Coping With an Invisible Illness – Verywell Mind, accessed August 6, 2025, https://www.verywellmind.com/what-is-invisible-illness-you-dont-look-sick-5119873
- Patient advocacy – Wikipedia, accessed August 6, 2025, https://en.wikipedia.org/wiki/Patient_advocacy
- In the kingdom of the sick : a social history of chronic illness in America / Laurie Edwards., accessed August 6, 2025, https://wellcomecollection.org/works/zd3yg7gb
- The Evolution of Patient Advocacy: From Rights to Reality …, accessed August 6, 2025, https://www.cambridge.org/core/journals/american-journal-of-law-and-medicine/article/evolution-of-patient-advocacy-from-rights-to-reality/876254EAB37781BDA865F28FFB7A0260
- How Disabilities Can Impact Mental Health – Resilience Lab, accessed August 6, 2025, https://www.resiliencelab.us/thought-lab/disabilities-mental-health
- FAQs | chronic-illness, accessed August 6, 2025, https://www.thecenterforchronicillness.org/faqs
- Center for Chronic Illness, accessed August 6, 2025, https://www.thecenterforchronicillness.org/
- Peer Support – Pain Concern, accessed August 6, 2025, https://painconcern.org.uk/forum/
- HealthUnlocked | The social network for health, accessed August 6, 2025, https://healthunlocked.com/
- Forums | RareDisease.net, accessed August 6, 2025, https://raredisease.net/forums
- Share your Story – Global Autoimmune Institute, accessed August 6, 2025, https://www.autoimmuneinstitute.org/share-your-story/
- Writing Your Disability or Chronic Illness – The Open Notebook, accessed August 6, 2025, https://www.theopennotebook.com/2019/10/29/writing-your-disability-or-chronic-illness/
