The Community that Lives

by Olivia Cheong

The Identities that Tear

Community.

It’s a big word, isn’t it?

What does it mean to be in a community, anyway?

I’ve been in the Thailand Topical Steroid Withdrawal-CAP community for about two years. For all new patients, we have a “prospective” patient WhatsApp group chat along with a “current and past” group chat. Predictably, these group chats are always filled with questions: what are the best accommodations; how do I deal with the visa situation; where can I print my documents, where can I get halal food, etc.

Many people who pass through this little community have similar stories: they’ve done the creams; used the nasal spray; gone through dupixent, UV light therapy, Rinvoq; cyclosporin, tried more experimental solutions like methylene blue or hypobaric chamber; spent thousands of dollars on traditional Chinese medicine or tried NMT (No Moisture Therapy—a simple but brutal protocol developed by a Japanese doctor). If you can name it, we’ve tried it—no stone has gone unturned!

I’m fairly active on these chats. I mean, I do my best to answer these questions; as a fellow peer in the TSW community, I know how overwhelming it can be to not only handle the reality of your body but to also handle logistics: managing your financial/social/familial obligations, research on the clinic, AirBNBs, the different apps and products that are recommended... the list goes on.

It’s gotten to the point where I’m somewhat recognizable: I’ll meet new patients at the clinic and the moment I introduce myself, a look of recognition flashes across their eyes: OH!! You’re THE Olivia! I’ve screenshotted the things you’ve shared. I could’ve sworn you were AI!

It’s a little odd... but also endearing.

To be perfectly honest, I’m no academic—I’m a former pastry chef with a BFA. I’m not particularly fond of overly abstract works; I just like to read a lot and I let my curiosity drive my learning.

Maybe it’s because I’m so curious but—I can’t help but always observe the environment I’m in; to track behaviours and patterns; to decode the people who live in these stories and to understand them a little better. It’s like solving a 1000-piece puzzle where I don’t have the box, I’m missing a bunch of pieces, the pictures have rubbed off and some of them don’t even fit that well together.

I have to say, though; the best puzzles are the ones I can build with care—and dismantle with precision.

So after two years of being in this community—CAP, chronic illness, listening to the stories that walk through the clinic, the themes beneath those stories and the kinds of connections that are forged and why—I’ve noticed a few things.

I think when we talk about communities, we tend to think of the collective: a kaleidoscope of people, each piece reflecting and refracting the light in their own, unique way. We often think that a community is made up of sameness: shared values, life experiences, habits, goals—which is true... but I think it’s too simplistic. It sits on the assumption that if you get a bunch of people who tick a bunch of the same boxes, a community should magically pop out.

In reality, the communities that endure—the ones built to last—have something more than skin-deep bonds holding them together. It’s something that resonates and vibrates in the marrow; almost on a mitochondrial level of being.

I think a community is more like a living, breathing organism: our commonalities are the skin that a community wears; the stories we share are the connective tissue that brings people together; and the relationships we form are the red blood cells that brings a community to life.

You see, during my university days I was very involved with an online asexuality community; I eventually joined the moderation team and served for several years. As a moderator, I was in charge of a subforum and had to read every single post. The team also moderated a hidden “sensitive” subforum for heavier mental health topics.

I’ve read many stories from a wide range of people: from asexuals and their non-asexual partners; anxiety and depression; potential self-harm; the fears of never being accepted in the fullness of their humanity by society, friends, families or their significant others.

I’m broken; I’m unlovable; I don’t want to be alone. A symphony of gaping wounds from across the spectrum made plain in black and white.

When you fall outside the concept of how a “normal” human loves, behaves and looks—queerness, neurodivergence or having a chronic illness like TSW—each deviation rips a little piece of “normalcy” away; each flake scattered into the wind until suddenly—

You’re not sure what’s left of you.

Chronic illness, in particular, reveals a few things. It highlights the systemic failures of treating illnesses without an easy resolution: fibromyalgia, joint hypermobility disorder, PCOS, etc. It challenges the idea of what a “sick” person looks like: a hunched-over elder; a patchwork of hair with a receding hairline; small, squinty eyes behind magnifiers-as-glasses and wrinkly, sun-spotted skin—popping several pills with trembling hands or carrying an oxygen tank.

The dissonance is more apparent with young 20-30 year olds—young; tall; beautiful, luscious hair with bright eyes and impossibly smooth skin—needing wheelchairs, canes or having disability parking spots.

Now, let’s layer the whole stigma of skin conditions on top of that.

Skin conditions, especially those that have red, inflamed rashes or scales, suddenly invite a barrage of questions: is this creature just dirty? Are those rashes transmissible? If I stand too close to this thing—this monster—will I catch it and become like them?

Interestingly, there is a general disdain for human “shedding”, whether that’s actual excrement, hair (long hair in the shower drain, anyone?) and flaking skin. Somehow it’s more socially acceptable to be red and inflamed rather than pale, flaky and obviously shedding. Many patients coming to Thailand will often say, “I can’t stop using moisturizers. I have a customer-facing job and I need to look normal.”

Flaking is the skin’s way of pushing out damaged cells. And yet this process needs to be kept from the public eye; hidden away in a mix of externalized and internalized shame and disgust wearing the well-pressed suit of “presentability” or “hygiene”.

Communities—no, relationships—carry a unique power that allows a space that can hold you and your experience with quiet, but fierce, tenderness. A place where you’re simply... understood: there’s no need to explain; no need to justify your experience; no need to stake your “existential right” to exist.

So finding a group of people whose stories echo your own is a reprieve; finally letting go of a breath you didn’t know you were holding.

The Stories That Bind

If shared commonalities is the skin a community wears, then the stories we tell are the connective tissue within this organism. They are the ligaments that move our bones; the cartilage that cushions our joints; the fat that insulates our organs.

Stories are powerful narrative devices. Stories not only show us different ways of being but it also tells us—and others—how we see ourselves in our own stories. The words that are used; the themes that beat beneath and what power they instill—or take away. And on a deeper level: how our stories are influenced by the system we live in and outside of.

In chronic illness circles—and, to a larger extent, self-help circles—we are in love with a particular narrative: the Hero’s Journey by Joseph Campbell. Broadly speaking, this is a template used in many myths and stories. It can be separated into three major movements: the call to adventure; ultimate victory in the decisive battle or crisis; and finally, the return home—changed or transformed in some way.

The Hero’s Journey is powerful in its message; it’s seductive in its simplicity and easy expectations. It frames struggle and pain as inherently meaningful because we will, ultimately, be changed in some visibly beautiful way: from the Hollywood “ugly, nerdy girl” who—let’s be honest—isn’t ugly, loses her glasses, straightens her frizzy hair and gets the hot male lead; or a caterpillar emerging as a butterfly. The transformation is always beautiful and easily legible from the outside; always framed as inevitable in its unfurling.

There is a bias embedded in this idea, however: the struggle is worth it because I can reclaim what is rightfully mine. The reward for my efforts—the blood, sweat and tears—is the return to my life before and, therefore, I become whole again.

No one wants to think they would go through something as life-changing as TSW; a condition that, in my opinion, systematically dismantles everything you thought was sacred. No one wants to go through a traumatic brain injury, losing a limb or having to live with an equally crippling condition.

Of course we want to believe that we can overcome it and put all of this bullshit behind us; to arrive back where we started, a little wiser and a little better equipped to handle whatever life throws at us. To settle back into whatever foundations we built: the family we created; the career we fought for; the life we dreamed of.

My question to you is this: what if the return isn’t possible?

What if your relationship snaps under the pressure?

What if your career corrodes from abrasion?

What if the life that once insulated you no longer keeps hell out?

The Hero’s Journey frames this glorious return to life before the problem as our God-given right: we’ve suffered and we’ve toiled. Why can’t I have this one piece of normalcy that I worked so hard for? Why has this been unjustly taken from me, through no fault of my own? The sheer indignation that following expert advice ultimately led to the complete destruction of everything I represent.

A wallowing, atom-piercing cry on a moonless night, “why me? What did I do wrong? What did I do to deserve this?” Blood boiling, eyes stinging, skin tearing—with nothing but my own exposed, raw flesh as my witness and my cage.

Fr act ur ed

Br o k en

Un w hole

Within the TSW community, we are not immune to the seduction of the return: is it really surprising when we reach for stories of “healed” TSW warriors? Then, when those same warriors flare many years later and are forced to step back into the struggle, their mental health falls off a cliff? Left to drown in despair in their personal and moral failure to overcome the challenge—the shame around the failure of their own story?

This myth, wrapped around the arc of resolution and a return to “normalcy”, doesn’t just have repercussions in the stories within our communities; when the outside world sees our suffering and assumes that, if we have “overcome” our struggle and thrive within the script of success, even pitiful, anguish-filled creatures can have a “normal” life. It is a benevolent condescension—one that reduces our stories and personhood into inspiration porn and denies our reality.

The Hero’s Journey is a beautiful aspirational frame that can give us hope—and yet, it is also unjustly cruel when you don’t fit in. Unjust in its rigidness; unjust in its coldness; unjust in its expectations that it is the only legitimate narrative.

And yet, somehow, the fault lies in us—not the myth that was never designed to hold our stories and the fullness of our humanity.

The truth is...

There is a return to life.

But not to life before the problem.

It’s a different story—not as tidy as the Hero’s Journey; it’s messy, circular, repetitive... but ultimately built to hold us when we can’t hold ourselves: strong enough to carry our new reality; flexible enough to adapt to our new circumstances; tender enough to love our new contradictions.

Rather than framing our success as glorious victory over the impudent body, perhaps it’s more about opening a conversation with it—a voiceless conversation partner, our unwavering vessel that carries us through this plane. With each new stimulus it tells us what works for it—and now we must stop and listen to it as an equal partner in this life.

With every conversation, there will always be disagreements—struggles, challenges—but now they will be navigated and endured together. A sacred pledge—in sickness and in health, a promise of collaborative coexistence to survive until the break of dawn.

Because just as the sun rises and sets, the return of struggle will loom on the horizon; each moment a constant negotiation between Before and a Better Now. And, just as the moon waxes and wanes, each moment is a test to endure the fire, the blood and the ooze to make it through—again and again without resolution to meet us at first light.

This is heroism not earned in the glory of combat and conquest—but earned in the grace and poise of accompaniment: to walk with pain through the moonless night; to meet the morning sun without fail; and to cradle suffering in the encroaching dark.

Perhaps, rather than searching for the growth, the expansion and the expectation of “stepping into your most authentic self”, there is equal value and validity in simply seeing yourself in higher resolution: your values a little sharper; your vision a little crisper; your humanity a little fiercer.

Maybe wholeness isn’t a static state tied to the return nor something that has to be excavated from suffering. Maybe it’s in transformation with you: ever changing, shifting, in conversation with you and your personhood.

Maybe the secret is that even in fragmentation, you have always been whole. Always worthy of love, care and compassion—exactly as you are, right now and every single moment until the day you draw your last breath.

The Relationships that Breathe

If community is an organism and stories are the connective tissue, then the red blood cells that circulate between these structures are the relationships that we form. They are the clots that seal our gaping wounds; the cells that bring in oxygen and release carbon dioxide; the life that courses through our veins.

So what is it about being in a relationship with each other that sustains a community? What is it that makes one community more enduring than another?

In the TSW community, there is a very deep distrust around doctors and pharmaceuticals (and, honestly, can you really blame them?); there’s a lot of rhetoric like, “chemicals” as “poison”; natural ingredients as “healthy”; doctors as greedy, green-eyed monsters that fed us hemlock in exchange for a fat payout. Whether we like it or not, however, there are some things that go beyond our own layman’s experience that require a more trained eye.

When the clinic in Bali was getting set up, the Indonesian doctor travelled to Thailand for additional training. He was a tall, young man with a kind heart and a desire to help. I inquired about his experience working in the medical field—curious to see if there were any differences between the medical field in North America and Indonesia.

Despite being half a world apart, the similarities were striking: overworked, an insufficient number of doctors to the number of patients, the expectation of getting everything done in fifteen minute slots (diagnosis, answering questions, taking detailed notes), the easiest target to blame when things go wrong or not delivering the appropriate level of care. Is it fair to blame the doctors who actually do want to deliver quality care—to paint them all as a grotesque monolith of greed—but are deprived of the tools to do so?

He nodded in appreciation: wow, you get it. Not many people can empathize like that.

I think most of us can agree that empathy and compassion are important in relationships; this ability to step into another being’s shoes or their experience allows us to connect to different walks of life and perspectives. It expands our own horizons and lets us see the world in a different light; it’s this exchange that fosters meaningful connections.

In general, I find that “empathy” favors a very feelings-first experience; when we look at self-described empaths, they’ll usually say something like, “I feel SO strongly. I feel guilty about turning down invitations, I feel bad about smooshing bugs. I cry when my friends cry and I just want to give them a hug. I really absorb everyone’s emotions.”

Coded into that, however, is the idea that empathy demands mirroring—reciprocity, an equally emotional reaction to the emotional experience—for it to be truly “authentic”. I think the danger here is when sharing strong, intense emotions teeters into spectacle—and, should the audience not reciprocate in equal measure, it’s suddenly twisted into a moral dagger: you’re “cruel”, “unfeeling” or “not human”.

At the same time, should someone take the time to understand someone’s position and story—not approaching it with feelings-first but with thoughts-first—you’re judged as “robotic”, “detached” or “lacking warmth”. Paradoxically, it’s also elevated above “feelings-first” because it’s more rational—inherently more valued as “productive” and effective.

Honestly? I think that dichotomy is a load of shit.

We like to think that we can cut rationality off from emotions and vice versa—but what most people don’t realize is how interconnected thoughts and feelings are. They’re less like disparate components and more like the brain and heart in an organism: the brain regulates the rhythm of the heart while the heart pumps blood to the brain; neither can exist without the other.

Mature empathy, then, is acknowledging this interdependence and allowing them to inform each other: to empathize is to inhale the experience of the other; to let our blood carry those experiences from our heart, through our brain and across our body—and fuel the cells that give us movement.

Compassion—the exhale—is taking the input from empathy and powering us into motion. There is, of course, the risk of projections and biases; setting your own biases aside in order to truly see your conversation partner for who they are, what they’ve experienced and their challenges is difficult—and so easy to distort them into amalgamations: stereotypes; caricatures; digestible, fractal versions of themselves designed to be attacked and othered.

So let me ask you this: could you extend compassion for someone you hate? Someone who has hurt you? A monster, an alien, an eldritch horror—a thing so other you don’t recognize the shape of them anymore?

Could you still see the thing sitting across from you as an entity worthy of a fulfilling life—with hopes and dreams and aspirations? Carrying their own burden, trauma and wiring that sparks the way it does? A being who acts in accordance to their own logic and values?

Do you think it’s fair for TSW patients to paint doctors as a monstrous monolith—the kind, Indonesian doctor—or overworked doctors who roll their eyes at the hypochondriac who's latched onto the newest “social media” disease—someone like myself?

Perhaps compassion isn’t just acting on your understanding of another person’s world. Perhaps compassion, in its most radical form, is the refusal to strip away their humanity—no matter how alien their circumstances are to you and your world. To honor their reality with fidelity, the humility to cast your own biases and perspective aside; all in the name of respecting another being’s dignity—even if only for a moment.

In a system that demands that humans love a certain way, behave a certain way and look a certain way, never being acknowledged in the fullness of your humanity is a core wound; one that echoes through the mitochondria of our cells, through the memory banks of our DNA and straight into the atoms of our very existence.

Maybe, then, in this repeated refusal to see each other’s world with brutal clarity, the most healing and bravest thing we can do for each other is, quite simply, to witness.

To witness our brightest joys with love; to witness our darkest despair with kindness. To witness our struggles with eyes wide open; with hands outstretched and with unflinching hearts. To hold the complexity and nuance of their experience, to be touched by the blood and the fire with unwavering discipline and a stubborn refusal to look away.

A sacred commitment to honor the fullness of our humanity—because to inhale is to claim dignity, and to exhale is to offer it back.