I knew something was very wrong when I became irritated at my boyfriend for speaking. Speaking! We were on the couch watching TV, the volume of both TV and man set to ‘civilised’. Yet trying to untangle his words from the big pharma commercial — “Plaque psoriasis? Try Otezla!” — felt not just impossible but quite maddening. Though I didn’t understand it myself, I tried to explain the phenomenon to him: How the mingling sounds made me want to scream atop a desolate cliff. But not before I hissed that he please stop talking.
Extreme sound sensitivity — or hyperacusis — was just the beginning of my profound unravelling; a stretch of calamity I wouldn’t understand for months. Before long, I amassed an assortment of symptoms: mood swings, full-body inflammation, extreme fatigue, insomnia, cognitive decline. I got lost in conversations and plots, and became monumentally angry when my brain couldn’t fulfil my requests. Once I stopped minimising my symptoms, I could acknowledge their source: the black mould in my apartment. I fled to a hotel, returning a month later in an N95 mask to pack up my stuff for good.
The mess began in April 2023 after a storm, when the roof of the Brooklyn apartment I shared with my partner started leaking. We texted our landlord; he bluffed about repairs and we forgot to pursue it because we’re busy and non-confrontational and maybe it’s fine. The leaking resumed in September after another bad storm, this time accompanied by patches of black mould surrounding all three air-conditioning units. Touch your thumbs and your forefingers together and that’s about how big each patch was. Today, I register this discovery as utterly terrifying, though it felt almost abstract at the time since the gravity of mould illness is seldom talked about. In retrospect (and by virtue of sheer oblivion and my chill girl tendencies) I fussed far less than I should have. Foolishly, I didn’t think some furry fungi was capable of displacing my health. Until, of course, it did.
The only recourse offered was having someone open the walls to assess the damage, during which time we were expected to remain in the apartment and enjoy the escalating consequences. We declined, and (naively) taped over the patches with plastic shopping bags. A few days later I checked into the hotel. To no one’s surprise, thin plastic bags are permeable, especially to something as unflinching as mould.
I needed a cheaper way to breathe clean air before our lease ended in three weeks so I moved from the hotel to a sublet before finally settling into our new apartment, where you’d be forgiven for thinking I’d feel better. Instead? Worse. My thoughts were murkier, my muscles sorer and my mood more volatile. I remember looking in the mirror and wondering how my ballooning face could swallow my eyes like that. Or why I needed to get up to pee countless times in the night. A $400 urine test showed I had high levels of ochratoxin A and aflatoxin living in my body, both of which are mould species, not Björk albums. My boyfriend felt fine, which makes sense for a few reasons: I have an autoimmune disorder called Hashimoto’s disease, a thyroid condition that apparently makes my body a seductive home for mould; he has no such condition. My digestion is sluggish; his is high-functioning despite a college dorm style of eating. I’m considered a ‘sensitive patient’; he is a man. According to Neil Nathan, MD, a leading authority on mould and the author of two well-regarded books for mould-affected patients, Toxic and The Sensitive Patient’s Healing Guide, sensitive patients experience “an increased reaction to light, sound, touch, chemicals, smells, food and EMFs [electromagnetic fields]”. I was that; that was me. Eating ushered in third-trimester-type bloating. Perceiving any kind of perfume made my frontal lobe twitch and my legs walk out of coffee shops. Bike-riding on sunny days felt not lovely but sincerely dangerous because it was just so bright.
Months passed and the apathy deepened. I thought of my body with contempt, cursing my inflamed muscles, my incapable mind and my weak constitution for putting me here. I detached from my friends because it was easier than fielding questions I didn’t know the answer to, or feeling strangled by social anxiety. I collected more symptoms: clumsy decision-making, personalities that competed with my own, intrusive death wishes that materialised out of nowhere. And then a relatively superficial one, which it pains me to admit I treated with similar panic: two deep-set marionette lines.
I’m probably no vainer than any woman pushing 40 — wrinkled this, drooping that — though smugly, I’ve always felt my Thai genes afforded me some concessions. But the marionette lines burst brashly into view one morning like a Cybertruck on a quaint street, mocking my theories of ‘Asian gracefully’; a miserable admission of my inflamed insides. Turns out when toxic mould checks into your body, it helps itself to your vitamin shelf — vitamins that your body needs to build and repair tissues, including the frown fossils blowing your cover. Put differently, mould toxins impair your gut’s ability to assimilate vitamins, minerals and antioxidants, which can lead to compromised immunity and the various other shades of garbage I was feeling.
Women with invisible illnesses have long been accused of having nothing more than a vivid imagination. Before TikTok girlies reclaimed delulu as the solulu, their sick grandmothers were deemed hypochondriacs. In “The Devil’s Bait”, Leslie Jamison’s essay about Morgellons disease, a poorly understood condition that primarily affects women, one sufferer laments, “I was so angry at the misdiagnoses for so many years, being told that it was anxiety, in my head, female stuff.” Jamison surmises this woman’s suffering is “quietly embedded in a tradition that goes all the way back to nineteenth-century hysteria”. She points out that mutual delusion has a clinical term — folie à deux — a theme echoed in Facebook groups and Reddit forums for people with mould-related illness. I guess if rats haven’t been mainlined with toxic mould and studied in controlled settings, the condition doesn’t exist. Not even if 64,000 people — most of them women — all report the same symptoms.
Sorry for saying ‘gaslighting’ but Dr Nathan confirms it’s alive and well in medical settings, though he describes it in refreshingly un-millennial terms. “Many conventional physicians are completely unaware of mould toxicity, a legitimate medical condition their patients are experiencing,” he tells me. He estimates that mould toxicity is 10 to 15 years away from widespread acceptance.
Related: Eight years ago, before — at last! — getting my Hashimoto’s diagnosis, I was ping-ponged between 11 doctors who concluded my blood work was “fine”. Several proffered antidepressants. These were conventional doctors and endocrinologists, who, in my experience, are hardwired to believe your body’s systems are discrete and absolute, rather than parts of an interwoven whole. When I explained the mould exposure to my GP, I said, among other things, “tired” and “brain fog”, to which she replied, “Adderall”. Rather than risk history repeating itself and getting 10 more clumsy opinions, this time around I pursued a functional practitioner, the same kind of doctor who unearthed my Hashimoto’s all those years ago. Thankfully, her thing is root causes, not red herrings.
The thickest fog took seven months to lift. Improvements were barely perceptible to begin with but my doctor’s strategies proved helpful in time: a very dull and scrupulous diet, herbs for liver support, daily sweating, and crucially, charcoal tablets that bind with mould. The thing about coaxing mould out of your body is that you can’t rush it. Low and slow is the directive. Gradual. Gentle. I have some bulldozer tendencies, which I can assure you are a tragic mismatch for this sort of thing. Binders like charcoal provoke mould — a living organism, remember — and rouse it from slumber. Meaning if you pummel your body with binders, the mould starts to dance in there, and things get dark for you out here. Today, a year on, I feel about 80% normal, though recently I got sick four times in two months. Testing has revealed I’m holding onto only negligible levels of mould — but who knows if mould-altered immune systems ever fully bounce back? A friend was exposed in college some 20 years ago and has long cleared it from her system. Today, though, she has to take “very good care” of herself and “sleep perfectly” else she catches every airborne virus going. Similar sentiments to the effect of “I never fully recovered” or “I still feel off all these years later” are not uncommon in online mould communities, though others report vitality in the aftermath.
If this story is inspiring you to clean the mould off your shower, by all means do — but know that superficial mould won’t traumatise your mind, body and spirit the way toxic mould from leaky buildings will. Nor can you just wipe it and move on; the hard stuff will colonise your home’s innards. According to Brian Karr, a second-gen environmental consultant, you don’t find mould by looking for it. “You will not see it,” he says. “Look for signs of water damage. The human eye can only see mould when it’s way out of control.”
In England, it is estimated that between 4% and 27% — or between 962,000 and 6.5 million — of households are affected by damp and mould. If you are worried about your home, bad omens include bubbling baseboard, warped flooring and cracking paint on walls. Proper remediation looks different for everyone but should be performed by someone who understands the (scarcely understood) health implications of toxic mould so they don’t make a bad thing worse.
Somehow, at a time when my brain resembled silly putty, I recorded everything. My medical invoices had descriptive line items and when placed next to photos of the mouldy air-conditioning units, told a plain story of cause and effect. All quarrelling with my security-deposit-keeping brick wall of a landlord was relegated to text and email. It doesn’t change my health trajectory but I won’t pretend it wasn’t deeply satisfying to see a courtroom judge ridicule this flailing, stuttering man — and subsequently to receive a cheque from him.
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