3: baby pyjamas
i’ve had eczema all my life – when i was a baby i had to be wrapped up in snowsuits with built-in mittens and socks, just so i couldn’t scratch. every so often i’ll get a patch or two, on my palm or my ankle or the top of my foot where i got badly sunburnt in 2015, and it’ll stay there for a bit until it goes away. i will scratch in my sleep, but for the most part, i’ve never scratched when i’m conscious – the snowsuits worked, the scratch reflex was cut off before it could be reinforced.
although my skin has always been dry – although people, including friends, including once my best friend at the time, have always made comments about it – although i’ve never been able to go swimming or jump in the shower or stay at someone’s house with any degree of spontaneity, always needing to make sure i have my doublebase or my epaderm or my qv or whatever paraffin-heavy, covered-in-flammable-warning-symbols substance my current gp has put me on – although all of that has always been true, eczema has never really interfered with my life, in the sense of actively disrupting it. it has always been background, something i work around, like badly laid out furniture, twisting to get by but doing it so many times a day that i barely even notice.
it’s a weird way to live – it’s not really a disability, except in that it prevents me from living a “normal” life and costs me money that other people don’t have to spend and occasionally causes me pain and is something i constantly have to factor in to all my plans. but it occupies this kind of nebulous hinterland in my life, something i don’t really speak about, that lots of people don’t even know about, because they can’t see it or the effort i go to to keep it under wraps (ha). it’s a weird conversation, mentioning offhand that i have a skin condition (if i say eczema people say no you don’t, because eczema makes you think of little kids with red elbows), being uber-casual and trying to telegraph i’m low maintenance!! while also hoping that they ask me no questions about it and also never try and get me to go swimming with them.
eczema, or dermatitis, is a skin condition that causes patches of itchiness, inflammation, swelling, and cracked skin. it is actually a group of conditions, including atopic dermatitis, dyshidrosis, numular eczema, and more extremely fun things. the most common, and what you probably think of when you read the word eczema, is the first one, but they all overlap and you can have multiple kinds and they all, basically, suck. atopic dermatitis/atopic eczema often occurs in people who get allergies – i have three food allergies and three contact allergies, which means that i get an eczema reaction when i touch things my body reads as deadly, like biological washing powder or raw potato (seriously). it also overlaps with hayfever – which i also have. barrel of laughs, this body, i tell you.
it’s also hereditary; i spent my adolescent summers in la roche posay, wiling away the mornings on msn messenger and playing sims 2 with my sister and listening to the black parade and going round and round on the carousel in the centre of the village, while my dad was having spa treatments. every summer he would leave with his skin slightly better, only for it to get worse in the next year full of work and stress and british weather and driving up and down the country in a car whose leather seats he was allergic to, so we would go back next summer, and on and on, the cycle of relief and deterioration playing out in front of my fourteen-year-old eyes.
at least mine isn’t like that, i thought, grateful for all the hours my toddler self spent hurling herself at walls, rubbing her wrists against the stair carpet, a tiny body consumed by the frustration of not being able to scratch. i am lucky, i thought, because i know not to scratch, because i was taught to be better, because i have to put thick white cream on every day and every time my skin gets wet, and sometimes i have a flare-up and all the skin peels off my neck and collarbones and there’s nothing anyone can do about it, but at least it’s not like dad’s.
at one point when i was a teenager – i remember this vividly, but i can’t now locate the memory in time, even though i remember standing in the uniform shop afraid to leave the changing room, remember walking down one of the paths at school afraid to roll up my sleeves – at one point between 2005 and 2010, i had a bad flare-up which still didn’t result in the traditional red, angry eczema of pop culture. instead, my skin was just dry – constantly, sloughing off whenever i got dressed or undressed or brushed an arm over my face. i had a case of vitiligo, pale patches appearing on my neck under the shed skin. i was given special pink shower gel, different creams, the usual arsenal. maybe they helped, eventually, or maybe it just went away by itself, i don’t know. all i know is that i remember being so afraid, all the time, thinking that when i was old enough to go clubbing i would have to wear polo neck and long-sleeved shirts on nights out so no-one would ever hit on me, not that i would be able to sleep with them anyway, because i wouldn’t be able to take my clothes off. (i had admirable priorities for someone who could not have been older than fourteen.)
but go away it did, and even though i’m always a little bit worried, when i dry my neck after a shower, that i’ll take away the towel and those white patches will be back, i’ve escaped them for now. what i haven’t escaped, not yet, are their siblings, the angry red eczema of pop culture.
at some point in 2019, i realised i had eczema on the palms of both hands – little blisters, scabs that made me a little self conscious but were easy enough to hide. they made it hurt when i clapped – little stings of pain during the standing ovation or the celebration. but no big deal.
by december, it had spread to the backs of my hands; at christmas, my mum grabbed my hand and turned it over, examining the rash that was forming. she went out and bought me doublebase and cotton gloves, and i dutifully slathered the cream onto my hands and slept with the gloves on for the next year, give or take a few nights. it was at this point, december 2019, that we discovered the mould in our flat (take one of two). i scrubbed the mould off with bleach, just before christmas, wearing marigolds and with a scarf wrapped round my mouth and nose to avoid breathing in fumes.
fast-forward 9 months, and the first wave of the pandemic – i wore the same scarf when going to the shops for the first week before i got a mask, awkwardly pinned to my hair so it wouldn’t fall down and leave my nose exposed. the eczema mostly went away, but still hovered, as it is wont to do, noticeable after a hot shower or a lengthy session of washing up. in september, though, it flared up again – spreading from my palms to my wrists and the backs of my hands, like an animated virus crawling over the surface of the globe in a disaster movie.
i went to the gp, and got prescribed a steroid, and then went again and got prescribed a stronger one, and still, it waged on. i started getting discoid eczema on my legs, which are hard disc-shaped bits of skin which feel like scabs (and so, if you are me, you want to pick them off) but are actually Secret Eczema Sleeper Agents. my gp asked me about potential environmental factors, but it wasn’t until november that i discovered the mould again, much worse this time, for round 2.
at some point – i’m sorry that i can’t date many of these experiences, but that’s the way of the world. sometimes things stop working, and you don’t notice for a while, and then you can’t remember a time when they weren’t broken any more. at some point, during all of this, i started to scratch. i couldn’t stop – i scratched until i drew blood, one of several things i watched my dad do all those years ago and swore i’d never copy, until i did.
from my hands, it chased up my wrists to my arms, elbows, shoulders, neck, ribs, hips, back, legs, ankles, the tops of my feet, the soles of my feet. by the time we were ready to move house, every time i moved my hands to fold a box or pack a plate, my knuckles split. my fingers were striped with paper-thin cuts, my palms still covered in blisters, my forehead red and flaky. in the new flat, i would get out of the shower and look at the red blotches that ran down my forearms, feel the bumps under the skin of my calves.
i registered with a new gp, and sent them photos of the eczema. i was prescribed yet another steroid, and two new heavy-duty creams, and referred to a hospital dermatologist. on payday, i bought myself a pre-payment certificate before collecting the prescription, and some new cotton gloves, and some cotton pyjamas. for the next week, i put the steroid on twice a day, hydromol three times a day, and topped up with doublebase gel in all the in-between moments. i slept in my normal pyjamas, with my cotton gloves on and the socks my boyfriend gave me for christmas in 2019, with my pyjama legs tucked in so i couldn’t pull them up in the night and scratch. in the morning, i performed my litany of skincare rituals, then put on my new daytime pyjamas – i didn’t want to deal with potential irritations from my clothes, and i also didn’t want to get cream on my clothes, both because it’s not good for them and also because it’s a serious fire hazard and i would like to be able to go near open flames without worrying about spontaneous combustion.
in between all this, i scratched – i scratched at night, waking myself up, waking my partner up. i taught them to stop me scratching in my sleep, to notice the look in my eye when we are on a video call and i am pretending to concentrate and instead i am scratching. i developed ingenious methods of scratching-without-scratching, grinding the coarse fibres of a teatowel into my palm over and over when i am ostensibly drying my hands, pushing one socked foot against another until the skin burns, until i literally wear it away.
i did the course of steroids that i was prescribed, and the eczema receded, its anger dropping back to just below the surface – not gone, but simmering, rather than boiling over. the marks on my skin reduced to small pinpricks, rather than the blisters. i wore my new pink pyjamas every day for a week, and then another week, because they were actually very comfy and it’s not like anyone except my flatmate sees my outfits anyway. i joke that i feel kind of like an oversized baby, in my little matching outfit with its elasticated cuffs, its bloodstains, the damp texture that comes from constant contact with my saturated skin.
i start wearing normal clothes again, and stop wearing the creams, and then the eczema gets angry again, new pustules expanding under the skin. more small blisters appear where my palms meet my wrists, that i do my best to coat in hydromol before i go to sleep. my knuckles start to split again, red marks chase their way back up my ribs. i go back to coating my hands in doublebase three times a day, grappling with my phone’s biometric scanner when my thumbprint is too greasy to be recognised. i stop trying to wear wool jumpers that set my neck on fire, and t-shirts with labels that i can’t stop myself from fidgeting with. i go back to wearing my pink pyjamas every day, put my gloves on at night to stop my scratching from breaking the skin, let my hands airdry instead of tempting myself with towels. i think about my toddler self in her snowsuits, and i remind myself that not all reflexes are permanent – you can always cut something off, however deep it tries to take root.