7

Itchy and scratchy: Eczema, psoriasis, acne, vitiligo

If someone asked me ‘What’s your problem?’ I’d have to say ‘Skin’.

Andy Warhol¹

‘Yep, I have severe full-body eczema and have had since I was a baby. Most kids grow out of it, but I never did. Eczema is so common but having it as bad as I do is not so common.’ Bina Bhattacharya, who lives in south-west Sydney, is snatching time to talk while her newborn is sleeping. Without a minute to waste, she launches straight into telling me about thirty-four years of living with eczema. Soon there will be tears – the baby’s, Bina’s and mine. I am moved by Bina’s story, which she tells unadorned and filtered through rage only half-suppressed. Steely objectivity is – I’m the first to admit – seldom sighted in me, but any dispassion I might have had removes itself the minute I press record. Smart and funny, Bina could easily platform her skin experience through her work as a filmmaker and screenwriter, as indeed she has. Turning her side of our conversation into snappy film dialogue would be a doddle. Without realising it, she works through the main themes of this book as if she has downloaded a checklist I haven’t yet created.

Identity, race, emotion, moisturising, steroids, itching and scratching, desire, dermatology, skin as metaphor, treatment regimens – it’s all here. Being colonised by eczema that puts your body on display and sets you up for uninvited opinions from random strangers for life. Having a boyfriend whose cousin found a miracle herbal cure, or remembering a primary-school friend with bad eczema, apparently makes a person well informed enough to tell you what you should do about your problem skin. Your chronic condition, the dry, red, itchy, scaly skin that is part of you. Bina tells me she has been lectured to about not using soap by all and sundry for thirty-four years, each person revelling in self-importance as they share their priceless advice.

Ethnicity throws in another skin-related complication. ‘I’m also mixed race,’ she says. ‘I have a very fair mother and a very dark-skinned father. I married another mixed-race person who has beautiful skin. My husband’s mother is from the Philippines, his father was born in Glasgow, so he’s Scottish. And I have two children. So, there are issues for me around my skin pathology and race. You know the metaphor of thick skin? You do develop a thick skin. I mean, my skin is literally thick. But, also, because you deal with so much shitty free advice from people, you become pretty cynical, pretty fast.’ But what really gets Bina going are the people trained to help her.

When I ask about her experiences with dermatologists, without drawing breath she says, ‘I don’t like them. They’re really awful. I could talk all day about how they’re shit. Skin cancer has a solution. Dermatologists like skin cancers because they can cut them out. Job done. Great, I’m a hero. Eczema, psoriasis and acne they don’t love because they can’t solve them. Eczema, it’s boring, it’s commonplace. There’s no sexy cure. It’s not life-threatening. You don’t get a lot of sympathy. There’s not a lot of compassion.’

She has felt a lot of guilt about all the extra work and worry that eczema created for her mother, who had to apply sorbolene from top to toe from the time Bina was six weeks old. She had to put her in wet dressings and make sure everything she wore through her whole childhood was cotton. Babies and toddlers being driven crazy by frenzied scratching don’t sleep much.

‘Dermatologists give you an impossible set of demands. My mother went and saw a paediatric derm when I was about ten – he’s still practising, still around. He was obsessed with house dust mites. Obsessed. He believed that people with eczema have eczema because they have house dust mites. He gave my mother a really punishing rigmarole – you’ve got to change all the mattresses, change all the sheets, do this, do that. She went and did it and it didn’t make a bit of difference.’ Dermatologists’ unrealistic expectations don’t stop when you’re an adult with your own family, either. ‘They’ll say, you need occlusion. You need to bandage your hands. You need to put plastic gloves on. I have two little kids. I wipe bums. I prepare food for my family. I clean up. These are things I can’t avoid. Also, I want to sleep. I don’t want to wear a plastic bag to bed. I want to have sex with my husband. With eczema, they give you a punishing routine, an impossible set of lifestyle limitations – they are impossible to pull off – and then they can just blame it on you.’

After my conversation with Bina, I tune in to a webinar hosted by the Eczema Association of Australasia designed for parents with babies and young children who have the condition. I come away with a supply of facts about eczema – clinical name atopic dermatitis. Eczema comes from a Greek word meaning ‘to boil over’. I knew eczema was common but had no idea that one in three babies develop the condition between two and six months of age. Eighty per cent of the people who might be called X-matics, or at least eczematics (for some reason there is no word equivalent to ‘asthmatics’), grow out of it by the time they are adults. Unless, as one of the presenters, Melbourne-based nurse practitioner Emma King, said with a smile, they become concreters or hairdressers. Then it will probably come back. Whatever you do, once you’ve had eczema your skin will always be dry and sensitive. Eczema is often linked with asthma and hay fever. The panellists all agreed that their goal is control, not cure, because eczema is treatable but not fixable unless you grow out of it.

Encouragingly, new injectable biologics for severe cases like Bina’s are becoming available. Biologics, which are injected or infused intravenously, are innovative pharmaceuticals that target part of the immune system – in the case of psoriasis, a T cell, or by blocking proteins in the immune system. Biologics for psoriasis, and now eczema, are a huge deal. Dermatologist Hélene du P. Menagé said, ‘If you ask me what’s been the biggest thing I’ve seen in my career in dermatology, it is the introduction of biologic therapies for severe psoriasis. The benefits could be so dramatic that my initial instinct was, “Oh my goodness, what price are we paying for this?” I don’t mean money, I mean how can something be so miraculous without major adverse effects.’ But for most patients, the results have been life-changing.

Eczema can be triggered by environmental factors: heat, dry air, prickly fabric against the skin, carpet, soap. Eczema can also be triggered by allergies. But triggers are not the same as the root causes of eczema, which are complicated. Eczema is caused by a mutation in the filaggrin protein in the skin. This mutation means that the wall of keratinocytes, the epidermal barrier, is compromised. It becomes leaky. Monty Lyman writes, ‘This “outside-in” model suggests that eczema (or at least many cases of it) is caused by structural impairments in the skin barrier, rather than internal immune dysregulation.’² Filaggrin was first identified as recently as the 1980s, so eczema’s aetiology (study of causes) is still being worked out. One recent paper co-authored by Pablo Fernández-Peñas suggests that the interaction of the microbiomes of the skin, gut and lungs plays a role in eczema.³

I was probably the one lucky person watching the Eczema Association webinar without – how to put it – skin in the game. Speakers described the regimen that Bina has lived with her whole life: moisturising all over at least twice a day, mandatory cotton clothing, bleach baths when needed. (Bina says that people find the idea of bleach baths shocking, but that they are amazing.) Discussion about the difference between ointments and creams (ointment is water in an oil emulsion; cream is oil in a water emulsion), about papules and vesicles, about thickened, hyper- or hypo-pigmented skin, streamed into parents’ computers and mobile phones. We were all watching from home, so I couldn’t tell if worried parents who tuned in were comforted or alarmed.

Two moments during the webinar stopped me in my tracks. The first was a succinct comment from Emma King, who specialises in paediatric dermatology. She said, ‘If it is not itchy, it’s not eczema. The itch can be dementing.’ She tells me later how she evokes what eczema feels like for people who have never had it: ‘like having hundreds, thousands of mozzie bites’. Close-up photographs of babies and children with eczema also give me pause: their chubby cheeks, their elbows, the backs of their pudgy knees, their whole tiny selves covered in eczema. One little fellow’s stunned eyes peer out from the wet dressings on his baby-head as if asking, ‘Is this a joke?’ If their excoriated, angry, sometimes-infected eczema looks like fiery hell, how must it feel?

Just like life, managing chronic illness goes through stages. Devoted parents make sure their offspring’s eczema never gets out of control, but in adolescence and young adulthood its exigencies can become a target of rebellion. Bina says, ‘When I was about eighteen my skin was really terrible, much worse than it is now. It was because I had become really disillusioned with the constant self-management and just wanted to be like everyone else. I wanted to go out late, stay over at people’s houses, instead of going through my punishing regimen of having to put on cream, have a bath, slather myself in moisturiser head to toe, put on pyjamas and go to bed. Basically, if I don’t follow that, I really don’t sleep. But, you know, I wanted to hang out with everyone else. I wanted to eat whatever I wanted, wear whatever I wanted. I wanted to not be managing my skin constantly. So, my skin was really terrible. I tried all kinds of alternative therapies.’

What worked in the end was corticosteroids. Bina tells me about seeing a doctor, ‘who took one look at my skin and said, “You have the equivalent of second-degree burns on 60 per cent of your body. No wonder you are miserable.” She rang up Canberra and got authority to prescribe thirty tubes. And I got it under control. It was as if my skin was ablaze and I’d been trying to manage with cups of water when I needed a fire hose.’ Getting your hands on enough of the topical steroid you need – so you can then get it on your hands or wherever you need it – is much harder than it should be. Bina complains, ‘They give you a measly little tube. I don’t understand this. You can’t get high on eczema cream! You would think it was Valium, the lengths you have to go to. The misery they put you through. This much [she makes the universal gesture for a minuscule amount, index finger close to thumb] for your whole body. You have to beg. The eczema is not going away! The number of times a doctor has written me a script, then I go to a pharmacy and the pharmacist says, “Oh, we can’t give you this,” because they need authority, blah blah blah. You walk out with a fraction of what you wanted.’

Bina tells me that the doctors she most warms to tend to be women in their forties with an ethnic, non-White background. I suspect she’d like dermatologist Monisha Gupta. I asked Dr Gupta about her views on eczema or psoriasis patients who must fight to get enough of the treatment that works. Her answer was more thoughtful, and unsettling, than I expected. ‘I think that’s a problem with our teaching. We are taught to do no harm. I’ve got a talk called “clinical inertia” and that [approach to treatments] is what I mean. To use a bushfire analogy, when we get our fire training we are told if you’ve got a little fire in a bin, you feel confident about picking up a fire blanket and putting out that fire. If it’s anything bigger, if a microwave has caught fire and the blanket won’t work, you shut the door and call for help. If you’ve got a big bushfire, do you want to use just hoses? You don’t. You want to use water-bombing from a helicopter. The specialty of dermatology attracts people who are very risk averse. But complications are a part of our work. Appropriate use of topical steroids should be the difference between a GP and a specialist. It has to be about having the confidence to use appropriate and potent medications.’

‘Flashover’ is a word that describes heat so great that fire spreads fast; the moment when a fire in a room becomes a house on fire. Monisha Gupta reflects on the nature of chronic illnesses such as eczema and psoriasis and dares to ask, ‘Are they chronic because we make them chronic? We don’t treat them well. There is a study going on in the United Kingdom by Chris Griffiths, a world leader in psoriasis. Rather than getting the GP to manage people’s psoriasis, they’re calling for an early intervention. So, when the patient is given the first diagnosis of psoriasis, they are referred to a specialist who gives them a biologic injection in the rapid-access clinic in Manchester. Biologics are the most powerful medication we have currently to treat psoriasis. Maybe we can just switch it off and potentially cure diseases. Right now, because of the Medicare requirements in Australia, our patients’ access to the most effective medication is quite delayed because they’re expensive. As a taxpayer I fully understand that there are hoops to go through. But in the long term, there might be some sense in what I call a pharma-economic benefit. If you switch off the disease at the onset with a strong medication, you have a well person for the rest of their life, rather than making the disease chronic. This is a very provocative thought process I’m entertaining after years of experience. I’m beginning to think that we’re responsible for making chronic diseases chronic.’

Not all of her colleagues would agree, of course. But dermatologists know well the high psychological costs of chronic skin disease. Bina Bhattacharya’s school experience was horrible. She warns me she doesn’t talk about it a lot and will probably cry. ‘I was always different. Kids didn’t want to hold my hand because it was sticky. I had an allergy to carpet, and little kids sit on carpet all the time. I got called names. Teachers were not sympathetic. I always think about how different my life would have been if I didn’t have a middle-class White lady as my mother, advocating for me. It was hard for me to concentrate. I scratched a lot. To this day people complain when I scratch. They say, “Can you stop scratching?” I say, “Fuck off.” Or if I could, I would.’

Praise, the 1992 novel by Andrew McGahan and the film adaptation of the same name, both of which I happen to love, is how Bina shifts the mood and fast-forwards into early adulthood. Praise is about dissolute twenty-somethings, one wheezy, one itchy. It’s set in a grungy, abject version of Brisbane where Gordon, a chain-smoking asthmatic with addictive tendencies and little energy or aptitude for sex, meets Cynthia. She has severe eczema and a high-octane libido. Bina isn’t comparing herself to Cynthia (although I suspect, like Gordon and Cynthia, she’d be great at Scrabble) but says, ‘I got very used to being naked in front of people because I got examined a lot. And I think that led to me being quite sexually impulsive in my teen years. I was certainly very insecure about my appearance.’ But managing her condition, and being smart, meant she could never be one of those kids who left their assignments to the last minute. ‘I always had to finish things in advance because I would never know what my health was going to do. So, I had a lot of discipline. But it was very hard.’

Bina sends me articles by the San Francisco–based psychologist Dr Shelley F. Diamond, with the tip-off that she writes amazingly about eczema. Diamond’s perspective as a woman, shaped since birth by a chronic illness, is distilled through her professional insights. Her graphic account of being restrained – by ropes, handcuffs, straitjackets and other contraptions – to stop her from scratching is devastating. ‘To resist responding to itching is a maddening experience when the itch is all over your body and you are unable to give yourself even a minimum of tactile sensation. I felt my mind drift out of my body, and it seemed as if I was on the ceiling looking down, knowing what “she” was feeling, yet at the same time separated from “her”.’ She writes, ‘A child cannot articulate the excruciating horror of these experiences – it’s hard enough for an adult . . . The use of restraints affected every aspect of my psyche.’

Diamond directs a simple but necessary reminder to medical practitioners: ‘There is such a large disparity between my world and yours.’ She challenges the ethics of medical professionals who ignore the emotional care that most chronically ill people hunger for. They must rectify this lack not by referring patients to psychiatrists – out of sight out of mind – but by making emotional empathy central to their work. Getting inside another person’s skin, we might say. ‘The patient is sunk into her body, with her mind in danger of being completely submerged. She is drowning, not waving at the doctor, who is sunk into his mind and nearly divorced from his body, which is reduced to a tool for his will.’⁴

We need a pedagogy of suffering; the reason medicine exists is to alleviate it. Diamond’s challenge to health professionals, and indeed all of us, is to feel, to empathise. Not by way of misguided ‘concern trolling’, but by acknowledging that some skin conditions may not be life-threatening but are nevertheless hard to live with. They don’t always go away. No one wants pity, fake or otherwise. But we all deserve recognition. Bina’s most-repeated phrase in our conversation was this: ‘There wasn’t a lot of sympathy.’

Early on in The Singing Detective, a gumshoe-noir novel inside a hospital drama inside a psychotherapist’s notes, punctuated by 1940s musical numbers and turned into seven hours of television, there is a famous scene of alienation. Comic but cruel, it is so disquieting I had to press pause during my viewing to regroup. (Alienation is the main affect of the whole series, written by Dennis Potter and first screened on British television in 1986. It may be renowned as some of the best television ever made, but good luck finding it on a legitimate streaming service today.) The psoriatic, arthritic Philip E. Marlow, played by Michael Gambon, lies in his hospital bed surrounded by doctors and nurses. Their entrance, pulling apart the curtains around the bed as if to announce the coming of the cavalry, is accompanied by Handel’s ‘The Arrival of the Queen of Sheba’.

As he lies prone, almost naked, Marlow’s blistered, flaking, ravaged skin makes him look like the survivor of an atomic bomb emerging from the blast zone moments after the flash. We have seen his nurse, soon to become a hallucinatory showgirl – her uniform hemline rising, bustline falling, chunky hospital shoes replaced by slingback heels – scoop moisturiser out of a tub. Her job is to ‘grease him’. Marlow, in agony, is febrile and delirious. Crying hurts his face. Laughing hurts his jaw. He is a prisoner, he says, caged inside his own skin and bones. He mentions the biblical Job, whom Satan did smite ‘with sore boils from the sole of his foot to the top of his Crown’.⁵ Marlow wishes for death.

Finding voice, he pleads, desperate, looking up at the supercilious faces and white coats peering down on his wretched form, ‘I can not stand it really truly can not stand this anymore. I can’t get on top of it or see clear of it or think straight – or – or – or . . .’⁶ Concluding that a mind as unwell as the body that contains it makes one complication too many, the pinstriped medical consultant asks him, ‘Would you like to see the Padre, would that help at all? Or (Sotto voce) a psychiatrist perhaps?’⁷ Meanwhile, a murmur of words forming an antidepressant cocktail – ‘librium, Valium, barbiturates, lithium’ – syncopates and then bursts into a full-blown song-and-dance number. Dem bones, dem bones, dem dry bones: the knee bone’s connected to the thigh bone, Hear the Word of the Lord. Doctors harmonise, nurses percuss skulls and bones. Parody and damnation become one, blended with lip-synced surrealism and written by pain.

Meanwhile, a spy in a trench coat, a character from Marlow’s novel-in-progress The Singing Detective, walks through a gloomy tunnel and enters an underground speakeasy called Skinskapes. The soundtrack? ‘I’ve Got You Under My Skin’, of course. In this and every moment of the show, writer Dennis Potter asks the question: Is the mind or the skin the true site of torment? For Marlow, it’s both. Forget doubleness, the supposed mind/body split; mind and skin are the same. The real detective work lies in finding the structure of the self.

Most psoriasis is not as bad as Dennis Potter’s own psoriatic arthropathy was. His fingers curled into clawed hands, a pen wedged in so he could write. More often than not, a cigarette would be wedged in too. Most people with psoriasis will not develop inflamed joints and are more likely to have the textbook version of the disease: chronic plaque psoriasis with its red, heavily scaled patches on the scalp, knees, elbows and lower back. But psoriasis can affect anywhere. When Potter’s flared, it covered 100 per cent of his body. Whether there is joint inflammation or not, psoriasis is a condition of inflammation. It is not ‘just’ a skin disease, all on the surface, but an autoimmune disease. Understanding this has led to more targeted biologic therapies, a miraculous development for many patients and their doctors alike.

The world-renowned psoriasis expert that Monisha Gupta mentioned, Professor Chris Griffiths of the University of Manchester, has been at the forefront of much of this research. In addition to arguing for early intervention, and establishing that psoriasis was an immune-mediated disease, a concept that led to the development of targeted therapies, he is a director of the Global Psoriasis Atlas, a long-term project that seeks to understand the epidemiology of psoriasis. The condition affects about 2 per cent of the population in Britain and Australia and more than 100 million people around the world.⁸ The World Health Organization says diagnosis of psoriasis doubled between 1979 and 2008.⁹ Psoriasis has a sobering range of comorbidities: it is associated with obesity, heart disease, anxiety and depression. Dennis Potter died very publicly of pancreatic cancer, although no link was ever found to the potent drugs he had taken for his chronic condition for decades.

In literature, as in life, psoriasis is graphic. The psoriatic diarist in John Updike’s 1976 short story ‘From the Journal of a Leper’ writes:

The form of the disease is as follows: spots, plaques, and avalanches of excess skin, manufactured by the dermis through some trifling but persistent error in its metabolic instructions, expand and slowly migrate across the body like lichen on a tombstone. I am silvery, scaly. Puddles of flakes form wherever I rest my flesh. Each morning I vacuum my bed. My torture is skin deep; there is no pain, not even itching; we lepers live a long time, and are ironically healthy in other respects. Lusty, though we are loathsome to love. Keen-sighted, though we hate to look upon ourselves. The name of the disease, spiritually speaking, is Humiliation.¹⁰

Updike, the great man of American letters, had fallen out of fashion before he died in 2009. In an infamous review of a late novel, David Foster Wallace quoted a friend who described Updike as ‘a penis with a thesaurus’.¹¹ The writer Patricia Lockwood sugars the tank of that old vehicle the Great American Novelist some more in equally blasphemous and hilarious measure. Her Updike takedown, she says, comes from a place of love. She writes, for example, ‘Updike unrolls himself over the landscape of his boyhood like a vast horripilating skin.’¹² That’s a compliment, I think, with a careful simile: his prose can indeed make your hair stand on end. Updike’s characters, it is said, reflect his own personality traits – narcissism, philandering, aloneness and objectification of all the world’s women according to how they might accelerate his sexual satisfaction. His alter egos share his physical traits as well: psoriasis, like the ‘leper’ above, asthma, a stammer. Reading his memoir, Self-Consciousness, it seemed to me that psoriasis could provide much insight to any researcher attempting to map the relationship between the life and the work.

‘At War with My Skin’ is his chapter about psoriasis, but it tells the story of a whole life. If you view semi-nude sunbaking on the porch of your childhood home alongside your mother, both covered in Siroil, ‘with its sickly, oleaginous smell’, as a Freudian trope, as Updike surely did, you might call it oedipal.¹³ His mother had psoriasis and wanted to be a writer too. (For the record, Updike writes that Siroil ‘softened the silvery scales but otherwise did very little good’.¹⁴) According to the memoir, key life choices were dictated by the author’s psoriasis. After the Army examined his body, Updike the patriot was excluded from the draft. ‘4-F: Psoriasis’, wrote the doctor on the form, ‘Unfit for military service’. Updike writes that because he didn’t see himself as presentable, he counted himself out of jobs such as ‘Salesman, teacher [like his father], financier, movie star’, choosing something more ‘closeted’, writing.¹⁵

‘Why did I marry so young?’ he asks the reader who has come along for this ride of self-examination. ‘Because, having once found a comely female who forgave me my skin, I dared not risk losing her and trying to find another. Why did I have children so young? Because I wanted to surround myself with people who did not have psoriasis . . . Why did I move, with my family, all the way to Ipswich, Massachusetts? Because this ancient Puritan town happened to have one of the great beaches of the Northeast, in whose dunes I could, like a sin-soaked anchorite of old repairing to the desert, bake and cure myself.’¹⁶

I found horrifying Updike’s descriptions of lying on New England dunes or Caribbean beaches, deliberately and systematically sunburning his skin. ‘Only the sun, that living god, had real power over psoriasis; a few weeks of summer erased the spots from all of my responsive young skin that could be exposed – chest, legs, and face.’¹⁷ Sunbaking worked, until it didn’t. He underwent PUVA treatment at Massachusetts General Hospital in the 1970s, under the care of an Australian doctor who appears in ‘From the Journal of a Leper’ as ‘Dr Aus’. Patients undergoing PUVA, a phototherapy treatment, take a tablet containing psoralen (the P in the acronym) that makes the skin more sensitive when exposed to UVA light. ‘It is pleasant, once or twice a week, to stand nearly naked in a kind of glowing telephone booth.’¹⁸

Is Updike’s skin a metaphor for his writing, or his writing a metaphor for his skin? ‘What was my creativity, my relentless need to produce, but a parody of my skin’s embarrassing overproduction? Was not my thick literary skin, which shrugged off rejection slips and patronizing reviews by the sheaf, a superior version of my poor vulnerable own, and my shamelessness on the page a distraction from my real shame? I have never cared, in print, about niceness or modesty, but agonize over typos and factual errors – “spots” on the ideally unflecked text.’¹⁹ And skin, as we know, is the biggest sexual organ.

Could only a narcissist write, as he does despite all this torment, that the disease was superficial, that it was ‘too much, simply, of a good thing (skin)’? Updike claims that the Italians call psoriasis morbus fortiorum – ‘the disease of the stronger’ – but might this be self-serving exaggeration? When I finished the memoir, I wondered if Updike was perhaps more conscious of his shortcomings than his critics credited. Or perhaps simply disingenuous: it’s not that he wasn’t selfish. ‘I sometimes worry that my self-obsession on the epidermal level has deadened those feelers that sentimentally interact with the rest of mankind. Away from the mirror, I am hard to distress, and uncannily equable. I have been since early childhood caged with my fierce ugly skin and all struggles outside the cage – that is to say, the general run of human travails – are relatively a relief.’²⁰

There’s acne and there’s acne, but whether you have a monster outbreak or a lone blemish, its timing is guaranteed to be terrible. Just got orthodontic braces? Acne makes the perfect accessory! Overnight your clothes don’t fit? Pimples will make you even more uncomfortable! Getting married tomorrow? Something old, something new . . . such as a zit on your chin! Teenage spots are near universal. During puberty, acne will appear on the face and often the chest, shoulders and back as well, giving us the portmanteau ‘backne’. (Now we have the COVID-specific ‘maskne’ too.) The ubiquitous selfie must add an extra circle of hell, although a heavenly filter might ease the twenty-first-century spotty teenager’s anguish. No filter takes away the emotional devastation of looking in the mirror, however.

Acne is like an unwanted but often compulsory uniform made by a fashion label called Self-Conscious and Unsightly. There are three kinds of acne: comedones (common whiteheads and blackheads); the more severe inflammatory papules and pustules; and, finally, the most serious, cysts and nodules. Deep and painful, these can leave permanent scars. Whatever kind of acne it is, it can accessorise general teenage angst, or perhaps cause it in the first place.

Skin eruptions are excruciating to live through. Almost as bad is watching someone else experience the embarrassments of acne. The ability to put one’s own tribulations into perspective is not a hallmark of adolescence. Dermatological setbacks fit neatly into the ‘It’s a disaster, my life is ruined’ narrative. A single pustulant pimple at the wrong moment can feel as catastrophic for some teens as the most severe cystic acne. But that’s no consolation to people like the droopy teenager who almost crashed into me not long ago in a shopping mall. He was moping along, looking at the floor, long greasy hair covering his whole face. I dodged him just in time, giving him little choice but to look at me. All I could think – as much as I tried not to – was, ‘That is the worst acne I’ve ever seen.’ But what was on his face, really, was despair.

Consider the heartbreaking reactions to Vancouver filmmaker Melissa Lam’s short film about the loneliness of acne, Skin, posted on YouTube. Nearly five hundred viewers have taken the time to write comments such as these:

I hate my skin so much.

I wish people could start to see the beauty of hearts not the beauty of faces.

Trying to cover it up makes it look worse. I cleanse and tone and moisturise every night. I drink two liters of water a day. Nothing makes it any better.

The moment when she tries different creams and prescription medicines for her acne hit me on a personal level.²¹

Irish actor Saoirse Ronan shone as the eponymous teenager in Greta Gerwig’s 2017 film Lady Bird. Ronan was twenty-one at the time but looked like the high-schooler she played, having brought her own acne along to the shoot. Her lovely but slightly pimply face, uncovered by makeup, made big entertainment news on the film’s release. Grateful fans on social media thanked her for baring imperfect skin on screen. In interviews, Ronan explained her ‘courageous’ choice (not her word), saying that stress, and the heavy makeup and hot lights from a fashion shoot before filming started on Lady Bird, caused acne on her skin for the first time. She thought she may as well use those spots. Who doesn’t admire method acting? She was back to having movie-star skin in time for the publicity tour.²²

Transgender YA writer Juno Dawson addresses this disconnect in representation in an article for the Guardian called ‘Why don’t teenage book characters have acne?’ It is indeed rare to see teenagers with acne in books or film, even when they are the protagonists. Dawson wrote a book called Spot the Difference, after deciding that calling it Pizzaface might be a bit much. She commented, ‘I just didn’t understand how something so, SO common could be so overlooked. We have YA books about incest, conjoined twins and intersex characters – all wholly worthwhile stories – but something that affects hundreds of thousands of teenagers seems to have slipped through the net.’²³

I have a theory here. Teenagers want to shut up about their acne until it goes away. Sympathy offered by the smooth-skinned in the interim seems cloying and fake. Usually acne does pass, with or without pharmaceutical help. Time is the variable, the agony being that no one knows how many months or years it will take. Once their own acne phase is over, former sufferers can become perpetrators of cruel hazing, joking about spotty, poxy teenagers, or can engage in the cloying sympathy they once rejected. Teens, pre-teens or post-teens who are experiencing acne are stuck in the worst of all worlds.

In our image-saturated online lives, however, there is no shortage of people happy to share – or overshare, depending on how you see it – details of their skin tribulations, whatever age they are. Actor, writer and comedian Mindy Kaling, who is in her forties, has shared on Instagram her preferred treatments for her skin, which has remained prone to acne since she was a teenager.²⁴ Dr Monisha Gupta told me that one dermatological trend heading north is adult-onset acne, or acne that lasts longer, one of a number of skin conditions attributable to lifestyle factors, prolonging the pain for people whose acne doesn’t disappear by their early twenties.

British journalist Christina Patterson experienced severe acne, so bad that she writes, ‘When my face was raging, and weeping, and pulsing with deep red lumps that were just waiting to grow their big yellow heads, and peering in car wing mirrors and feeling sick at what I saw reflected back, I thought this was as bad as it could get.’ This comes from her essay – as visceral as Updike’s – on skin, from an anthology of literary writing about the body. ‘My dermatologist founded an acne support group, and you don’t run support groups for things that are gone in a month.’²⁵ I don’t know if this was the same rotten dermatologist who called over his medical students to gawk at her, but it’s lucky Patterson’s sense of humour was not extracted with her pimples. Echoing Updike’s military metaphor, she writes that skin can ‘feel like a secret battleground, in a war that fills you with shame’.²⁶

She tried everything. A dermatologist prescribed Roaccutane, the most powerful drug for cystic or nodular acne.²⁷ (Roaccutane was a brand name for the medication isotretinoin in the United States, but it is now marketed there as Accutane, Claravis, Amnesteem, Absorica, Myorisan, Zenatane or Sotret.) Like Updike’s psoriasis, Patterson’s acne was treated with PUVA light therapy. She writes, ‘Over the years, I tried every drug the dermatologists could find. I tried a cream they use on lepers. Weird diets, homeopathy, Chinese herbs, facials with a woman who used a metal cylinder covered in spikes.’²⁸ Her acne took a terrible toll. It disappeared eventually, although, as she writes in her warm and lively memoir, The Art of Not Falling Apart, other health issues landed in its wake. Acne isn’t life-threatening, but she writes about it in the same category as the lupus and breast cancer she was later diagnosed with, because it causes so much grief. Patterson reminds herself – and her readers – of the body’s extraordinary capacity to heal itself. ‘I also know that every time I’ve been ill, I have got better.’²⁹

I asked a random, multigenerational group of Facebook friends about the acne treatments they tried as teenagers, whether over the counter, prescribed or homemade. Clearasil and Oxy10 (both formulations of benzoyl peroxide, or BPO) were top of the list, closely followed by pHisohex, an antibacterial face wash. BPO can work on mild acne by killing bacteria and removing excess oil. A cleanser from Formula 10.0.6 (produced by the company formerly known as Bonne Bell, and based on the original formula from 1933) has a list of ingredients that reads like a fruit salad because glycolic acids, its inactive ingredients, are synthetic versions of acids derived from fruit. One source said it worked on him like paint stripper. A friend told me that the apricot scrub she used scarred her skin permanently, and, indeed, there have been lawsuits involving a different apricot scrub, made by St Ives.³⁰

Another friend shared details of Chinese remedies for acne that seek to reduce inflammation by rebalancing the excess heat and damp heat that can manifest on the face, and by eliminating toxins. Traditional Chinese medicine uses herbs and botanicals (including honeysuckle-flower powder), acupuncture and drinking lots of water, not too hot, not too cold, to manage acne. No one in my sample group mentioned the ProActiv subscription range, which, like most cosmetic treatments, is heavily promoted by celebrities. Oil of Mink didn’t get a mention, although it takes up five pages of actor Matthew McConaughey’s memoir Greenlights. Sold direct by his mother, mirroring the sales model exemplified by Avon, it caused him terrible acne. But not so terrible to stop him from winning the award for Most Handsome in his senior year of school. He recounts a hilarious story about how this award extinguished his family’s attempt to seek compensation for the damage that Oil of Mink did to young Mr McConaughey.

Prescription retinoids such as Differin or Epiduo – which, I can attest, bleach every towel they touch because they also contain BPO – made the list. Witch-hazel, it seems, did not cast an acne-vanishing spell on the people who used it. Although they cleared her blackheads, one pore-strip user discovered thanks to a very red nose that she was allergic to the adhesive backing. Unexpected remedies revealed by my survey included toothpaste, charcoal cleanser, calamine lotion, honey (eaten and applied topically), turmeric paste, oatmeal, Vegemite and, horrifyingly, X-rays.

Oral contraceptives can work wonders for women with acne. Birth control pills contain the female hormones oestrogen and progestogen, which balance out oil-producing male androgens. Acne is one of the most common reasons doctors prescribe antibiotics. They can work, but not for everyone. One friend who in the past had severe cystic acne said that Roaccutane ‘saved his life’. He wrote that it dried out his skin so much, ‘I had to wet my face and rub it with moisturiser just to open my mouth in the morning.’ But it was worth it. Roaccutane may have a controversial reputation, but it has been around for thirty-five years and for many people is the only thing that works. A few Facebook friends messaged me privately, one confiding that he was suicidal because of how bad his skin was before he started taking Roaccutane, which can cause depression in a small number of people but for him was ‘a miracle cure’. Talking about acne prompted this young man, who now has his own family, to write me a note full of pain and traumatic history that moved me to tears. Acne takes over not only the face, but the mind, body and soul.

Dealing with it can be expensive and exhausting. I couldn’t help thinking that with their scientific promises of a cure, these products we slather on our teenage faces act like gateway drugs for a lifetime of relying on cosmetics. The active ingredient for the buyer of any desperate remedy is hope; for the seller, it’s often snake oil. But depending on the kind and severity of acne one has, the treatments can work.

There is a more ‘mechanical’ approach. Dr Pimple Popper exploded (sorry) onto our screens to become ‘The internet’s favourite dermatologist’. Sandra Lee MD, a dermatologist with a practice in Upland, California, was surprised to find that her most popular Instagram posts – met with ‘unbridled enthusiasm’ – were fifteen-second videos of simple blackhead extractions.³¹ This is not a procedure covered by health insurance, but patients let her upload videos of their extractions in lieu of paying a fee. Thus began Dr Pimple Popper’s empire.

Pink scrubs, a warm bedside manner, and the ickiness of other people’s extrusions and growths have made Dr Lee a star. Many patients hug her at the end of their procedures. Why shouldn’t we believe her when she says she wants to help people feel better about themselves by removing things – often shockingly enormous things – that have shamed them for years? In her book, she refers to herself as a ‘glorified hairdresser’ because of the emotional connections she develops with her patients,³² but that is too folksy for someone with five years’ post-medical-school training in dermatology. (She did an extra year on lasers and cosmetic surgery after the standard four.) Interestingly, her Singaporean father was also a dermatologist.

‘Popaholics’ love watching cysts being cut out, milia being extracted and comedones, ‘the building blocks of acne’ – blackheads (open comedones) and whiteheads (closed comedones) – being squeezed out by Dr Lee’s trusty comedo extractor. If your kink is watching the removal of the ‘king of the comedones’, a dilated pore of Winer (or DPOW) – always a crowd-pleaser – you’ve come to the right place. On the other hand, perhaps you think a purulent Mount Vesuvius erupting from a back lipoma is the most disgusting thing imaginable. If Dr Pimple Popper’s project, now in its fifth television season, proves anything, it’s that disgust and compulsion are not mutually exclusive. Her videos have had more than three billion views (not a typo) on YouTube. She writes, ‘My patient gets rid of something that has been bothering them for some time, and at no cost. Viewers of my YouTube channel, Instagram, Snapchat, Twitter and Facebook page get to witness the glory and satisfaction of a good blackhead extraction.’³³ But even she admits the service she performs as the world watches is a bit weird, and not something that dermatologists usually do.

Merchandise sold on the back of her television program and social media platforms includes T-shirts (‘I’ve got 99 problems but a pimple ain’t one’), her SLMD skincare line (a way to ‘bridge the gap between a dermatology appointment and the skincare aisle’, according to her website) and a book. Put Your Best Face Forward was my favourite of all the illustrated dermatology and skincare books I read. It’s not a textbook, as Sandra Lee makes clear, but it is substantive, with exemplary descriptions of skin concerns from acne to ageing and everything in between. Its photo close-ups of real patients in her practice – as disembodied and gruesome as those in any dermatology textbook – are outstanding, as are her diagrams. As you might expect, the before-and-after shots are irresistible.

Acne vulgaris is an inflammatory skin condition that arises in the pilosebaceous unit. This is the oil gland attached to the hair follicles that sit above and below the skin, and they are bountiful on the face and head, the oiliest parts of our bodies. (Which is why leg acne is not a thing.) The hormones that kick in at puberty cause the sebaceous glands to enlarge and produce more sebum, or oil. The sebum mixes with dead skin cells inside a widened hair follicle, which clogs the pore. Inside these tiny holes lurks a rod-shaped microbe called Cutibacterium acnes. It can form a comedo (the singular of comedones) and cause more generalised inflammation. (‘Torpedo your comedos with . . .’ seems like an obvious advertising slogan, but I’ve never seen it used.)

Sandra Lee’s own SLMD product placement notwithstanding, I was surprised to read in her book that the same range of acne medications has been prescribed or available over the counter for generations. She writes, ‘Some new things have come out but they are few and far between.’³⁴ Over-the-counter treatments are more likely to work for blackheads and whiteheads, because comedones are the mildest of the three kinds of acne. Blackheads, in case you have wondered, are not blackened by dirt. Being ‘open’ comedones means they are exposed to oxygen, which turns the gunk grey.

Cystic and nodular acne won’t respond to most topical remedies, although Retin-A, which requires a prescription, can work. (It works for wrinkles too.) Writer Iva Dixit, who experienced a dramatic outbreak of red spots on her chest aged thirteen while at school in India, refers to the ‘flake-pocalypse’ the medication causes, and ‘the unique cruelty in Retin-A’s way of making the problem worse before it gets better’.³⁵ Dr Lee’s comments about treating severe acne echo those of other dermatologists I spoke to about isotretinoin (Roaccutane, and the other brand names mentioned above): ‘It does something that no other medication can do. It can potentially completely clear severe acne. It’s an amazing medication and it gets a bad rap.’³⁶ Like anyone who prescribes it, she is careful about restricting and monitoring its use (pregnancy tests in advance, regular blood tests to gauge side effects) but says if she couldn’t use isotretinoin, she would consider no longer treating acne patients.

Whether you get acne, and its severity, depends on the lottery that is genetics and hormones. But Dr Lee and many other dermatologists emphasise that it is not caused by stress. Stress can compound acne, particularly by suppressing the immune system. Picking at spots and making them worse can be associated with stress. But stress itself doesn’t cause acne. What about diet, especially the junk food that is so often blamed for acne? It seems unlikely that any foods cause acne, but, as much as it seems like a cop-out, the evidence for food’s role is unclear. I was determined to answer a question common to popaholics and chocoholics alike: does eating chocolate cause acne? Dr Lee doesn’t answer that one and, sadly, nor does anyone else reputable. A systematic review of studies concerned with the epidemiology of acne published by the peer-reviewed British Journal of Dermatology in 2012, with promising subheadings such as chocolate, dairy and glycaemic index, raised my hopes but dashed them with ambivalent conclusions.³⁷ Of course, it’s not the authors’ fault that they found previous studies were flawed and offered no clear answers.

One of the study’s authors, Dr Ketaki Bhate of the London School of Hygiene and Tropical Medicine, confirmed to me in an email that there is no major new evidence on this topic, and that independent research into acne is generally underfunded. She said, ‘Many studies are published by drug companies exhibiting marginal superiority of their own latest products over a similar industry standard, or their own previous versions of drugs.’ There are two major government-funded acne-related studies currently underway in the United Kingdom. One is looking at a drug commonly used for heart failure now being considered for use by women with hormonally driven acne; Bhate’s own research looks at possible connections between oral antibiotics prescribed for acne and anti-microbial resistance. Both studies, she says, ‘have scope to change practice’.

For now, our acne discussion finishes with a typically direct comment about junk food from Sandra Lee, Dr Pimple Popper: ‘Pizza causes acne only if you rub it all over your face.’³⁸

Winnie Harlow is a Canadian woman who is perhaps as famous for having vitiligo as she is for being beautiful. She has been a contestant on America’s Next Top Model, appeared on the cover of Vogue and featured in Beyoncé’s Lemonade ‘visual album’, but everyone wants to know about her skin condition. In a fashion magazine interview she said, ‘I happen to have vitiligo and I’m proud of it, but I’m also not a spokesperson for it just because you want me to be, or just because I have a skin condition. That’s not how life works. That makes it difficult. It’s not about me being private about my skin condition. I love talking about it. But it’s not the only thing about me.’³⁹

Vitiligo (vit-uh-LYE-goh), particularly in people of colour like Harlow, is often more obvious than eczema, psoriasis or acne. Whether it produces distinct chalk-white patches on dark skin, milky spots confettied on fairer skin or anything in between, its dappled effect is striking, up close and from afar. It can affect all skin tones – a close relative of mine, with typical Anglo-Celtic skin, has it. Vitiligo is an autoimmune disease, a systemic condition like psoriasis or eczema, but one where immune cells attack melanocytes and stop them from producing pigment. People with vitiligo have a higher risk of getting other autoimmune diseases, particularly thyroid disease.

Dr Monisha Gupta runs a pigmentary disorders clinic at The Skin Hospital in Darlinghurst and Westmead Hospital in Sydney. She says, ‘Vitiligo can be devastating for a person of colour. Any change in skin colour, whether lightening or darkening, is high impact in a darker-skinned person.’ She recognises the stigma involved with vitiligo, particularly as a person of colour herself who trained and worked first as a dermatologist in India. India has the highest rate of vitiligo in the world, followed by Mexico and then Japan.⁴⁰ ‘Our patients feel heard. Of course, it’s not as if only dark-skinned patients come to the clinic. And then it’s not just Indian, Chinese, African – there are people of Middle Eastern, Sri Lankan, Bangladeshi, Greek, Italian, Spanish heritage presenting to the clinic. Australia is uniquely placed to recognise and treat these because we have such a culturally diverse population. I went to the St John’s Institute of Dermatology [a leading clinical and research centre] in London in 2019 and was surprised to learn they had just started a dedicated vitiligo clinic recently.’

In his book, Monty Lyman cites studies that show half of people with vitiligo report depression.⁴¹ One person quoted in a New York Times story about vitiligo said, ‘People say vitiligo doesn’t kill you, but it kills your spirit.’⁴² The Lancet reported a truly shocking story in 2015: a 25-year-old Pakistani student in Britain contacted The Vitiligo Society seeking advice on getting his arm amputated. He had started to develop vitiligo on his right hand and forearm, and said he would be ostracised if he returned to Pakistan, saying ‘I will surely be rejected by my family if they see my forearm.’⁴³ Echoes of vitiligo’s conflation with leprosy, even though it is not contagious, ripple through time.

There is no cure for vitiligo. Better understanding of the disease’s immunological pathways, however, means that treatments are improving. Gupta says her approach to treatment is to ‘switch off’ the immune system so that it stops attacking the pigment-producing cells, allowing patients to regain and retain colour. Immunosuppressive drug treatments and topical steroids are available for people with vitiligo, but phototherapy is the cornerstone of treatment. Gupta explains, ‘Vitiligo is like wet paint, and there are fewer “sticky” melanocytes, so we “dry” it with phototherapy.’ Usually not PUVA (as experienced by John Updike and Christina Patterson) but narrow-band UVB. The dosage must be carefully calibrated to the colour of the person’s skin, which requires rethinking of what is ‘normal’. Gupta says, ‘When I arrived in Australia the dosing was very timid, because it was designed for whiter skin types. We’re working on an Australian consensus on phototherapy guidelines. We can’t embrace the British or American guidelines in toto.’ Another form of phototherapy becoming more common is the handheld Excimer lamp, which can produce different wavelengths in the UV spectrum and is widely used in China. Most phototherapy requires at least forty-eight short sessions in the booth, depending on whether the aim is to stabilise or stop depigmentation. Taking your foot off the brake too soon can backfire.

Camouflage is a word that pops up a lot, particularly on vitiligo support sites such as LivingDappled.com. Gupta says, ‘as the medical treatment is slow to work and may not always be effective, camouflage offers an alternative solution for patients with pigmentation disorders’. In a dramatic TED Talk, Detroit broadcaster and movie critic Lee Thomas opens by talking about showbiz and his lifelong desire to be on television, saying he had always been drawn to the spotlights, the glamour and makeup. Thomas is a charismatic speaker, and it took me a moment to notice the contrast of his white hands against his dark-skinned face.

After speaking for about a minute, Thomas walks over to a mirror set up on the stage, sits down, removes his scarf and starts wiping his face and bald head, using a pile of white cloths that start turning brown as he removes his makeup. He’s self-conscious, and it’s awkward to watch, but riveting. After a good minute, he smiles at himself in the mirror and stands, revealing the now-exposed white patches on his neck, face and scalp. ‘Ahh, much better,’ he says, as the audience applaud in support.

Lee Thomas tells his story. He was diagnosed with vitiligo when he was working on Eyewitness News in New York City, the top-rated 5 pm newscast. ‘The doctor looked me right in the eye and said . . . “There is no cure,” all I heard was, “My career is over.”’ But he couldn’t quit after all his family had done to support him to get where he was, so he decided to continue by wearing makeup, which, being on TV, he wore anyway. This was easy, he says, except for his hands. The disease comes and goes, but is unpredictable. He shows a photo of himself with a completely white face, a Black man turned white. He confides that being out in the world uncamouflaged, without makeup, was like being a leper. ‘The stares . . . the comments under their breath. Some people refused to shake my hand, some people moved to the other side of the sidewalk, moved to the other side of the elevator. I felt like they were moving to the other side of life.’ As a result, his demeanour started to change. ‘I was allowing this disease to turn me into this angry, grumpy, spotted guy. It just wasn’t me.’

So, he came up with a plan. First, he would just let people stare, and second, he would react with positivity. He shares a story about a guy staring at him in the grocery store who, once Thomas has explained his condition, says, ‘If you didn’t have vitiligo, you’d look just like that guy on TV.’ A little girl sees him in the playground and screams. After that he says he stayed in the house for two weeks, getting his mind around the fact that ‘I scared small children. That was something I could not smile away.’ Another time, a little girl asks him if he hurts, and reaches out with kindness to touch his face and try to ‘rub the chocolate into the vanilla, or whatever she was doing’.

His TED Talk ends up being a paean to positivity and healing, of overcoming adversity, of becoming a better man. What struck me most was that Lee Thomas seemed on the verge of tears through the whole thing.⁴⁴