I often get asked why I cover up so much. Am I hiding my skin condition? Am I cold when it’s really hot? Am I sure I’m not hot?!
I don’t go out of my way to hide my Ichthyosis. I am very proud of who I am. However, I do cover up to be comfortable. Wearing layers helps to protect me from the sun, the cold and from scratches and bumps I encounter from living life. Sometimes I wear sleeves that don’t quite cover all of my arms, and I end up with small cuts on them just from doing desk work!
Getting dressed can be tricky – what clothes will keep me warm, not show too much ointment and look good?! I need that trifecta. I pat myself dry before getting dressed. And I avoid silks and satins because the just get so oily from my ointment.
I love fashion, and so glad I’ve found ways to work around Ichthyosis. When I was younger, I’d avoid sleeveless dresses and short skirts. I’d avoid black tops because my skin could show up on my shoulders. I wouldn’t wear jeans much because they’d scrape.
Now I have body confidence, I wear whatever I want.
I have a base layer wardrobe – long sleeved tees and stockings/leggings. They’re mostly black or charcoal grey. And then I have fun with the top layers – dresses, skirts, tops and pants.
When I’m really sore, I wear soft clothes. Pyjamas. All the time. If I have to leave the house, I wear clothes that feel like pyjamas – like silky pants or a tshirt dress (like the tshirt dress and kimono combo in the top picture). I don’t wear denim when I am sore as it scratches. I also avoid stockings on super sore days – taking them off rips my skin and makes it bleed. And I try to make sure my clothes are breathable. Here’s a comfy outfit!
My fave stores to buy from are Cue, Gorman, Target, St Frock, and Sussan – all of which are featured in this post. I love thrift stores too – Camille got me this dress from an opshop which is perfect.
As I’ve gotten older, I’ve also learnt to wear quality, comfortable shoes – if my feet are sore, my whole body hurts. Last year I got a foot infection from wearing cheap, poor quality shoes – the non waterproof upper and sole meant my feet got so wet. As soon as I switched to leather, my feet felt better.
I avoid silks and stains because the just get so oily. Once I wore a silky dress (I think it was polyester) and it got so oily on a car trip that I looked like I’d wet myself! I bought a new outfit!
I hate trying on clothes as my skin rubs and then I leave skin behind. Sometimes I’ve bought something just because I’ve left too much skin behind!
So that’s my fashion story. You can read a little more about why I love sharing photos of my outfits here. Also, I use Coke to wash my clothes – read about that here.
Here’s what others with Ichthyosis recommend. This post was born from an amazing Facebook chat – here are my friends’ responses. You might recall some of them from previous Ichthyosis Awareness Month posts. They said I can republish these.
“Practicalities of fabrics, comfort, laundering and my personal preference of layering, as well as focusing on creams, comfort etc and being an older generation. Unlike many younger opinions, when carving my own style, I was still hung up on covering my skin too much, simply not liking if my skin looked dry if exposed or sticky arms/legs via creams and me sticking to things or things sticking to me if they were too exposed to having had a skin infection history especially a bad legs story as a kid, ever since then I’m careful outdoors to not overexpose my bare legs.
Each decade from my teens to my 40’s has had me evolve with my relationship with clothes, practicalities and budgets etc.
My teens, I pieced music and style and was anti mainstream. In the 80’s, once I went to Art college and went through a rock/hippy phase, with scarves and suit jackets, hippy tops, long skirts/tight jeans and boots. Into my 20’s first at Uni I loved the fact that being into art meant I wasn’t expected to be a high heels girl, so Dr Martins/monkey boots/converse trainers, leggings, jeans & dungarees (especially in the studio) with loose shirts suited me. I went through the rave era, so music again influenced my look and I kicked against girly expectations with the baggy tops, hooded tops and very bright/patterned leggings/jeans/trousers with a kind of ‘well look at my bright image rather than me’ kind of vibe. Budget and practicalities ruled and having to service wash my laundry for many years, the durability of clothes was and still does get considered. I have always loved denim jeans and had a denim jacket in my wardrobe each decade. I’ve worn flares/skin tight/bootleg/combat cargos/cropped to skinny legged/jegging leggings in all eras. And the ‘ladette’ era post rave suited me again for practical reasons and style again went with the clubbing era of Levi jeans with figure hugging tops with loose shirts/denim jacket or a cropped leather jacket (the few times I’ve worn black jacket other than a pinstriped suit jacket).
Although casual attire has always felt more comfy for me, I have used the mix of suit style jackets, formal trousers to shirts, blouses, in contrasting ways to formalise casual wear but never been a high heels gal. I wore denim shorts, printed culotte shorts and mini skirt with tights and calf laced boots during my clubbing days. This was my most sexual image of the wonderbra era of tight tops but again with the quirky edge rather than glamour femininity. With my slight figure back then I explored my identity as a young woman but didn’t feel I fitted into glossy feminine role and have only really felt that with hints of it, as it wasn’t within my budget or confidence to be super dressy. Even today I can wear pretty matching underwear and scrub up to looking smart and presentable. I rarely wear skirts these days and haven’t got the figure of my 20’s. But I feel more at ease with what I wear as there are flashes of colour, patterns, styles with jackets, shirts, chiffon tops with leggings, jeans, trousers that combine the very casual elements from my anti ‘high’ fashion student days (still love a good day to suit jacket with scarves to just boots & leggings with a cosy tops to smart trousers with chiffon tops or loose shirts with a cami vest, as I layer a lot & like contrast)
I don’t feel the pressure to fit in as I did as much or kick against so deliberately but I do tend to choose things around what I feel also is practical with my skin and creams, as I don’t like to have cream marks, skin showing on clothes if tops are too dark or fabrics too porous but I just know what suits my comfort zones. Patterns, colours and stripes have come back into my wardrobe in a less garish way of my student days but I probably mix classic with bolder in my own quirks to just ordinary days which got toned down by my ‘grey phases’ when I’ve struggled with depression at points.
I have a sometimes difficult, odd, garish, understated to overstated relationship with my image as I’ve tried to express and be more comfortable within and beyond my skin.
Undoubtedly being an Artist, often on a budget for my health employment restrictions at points and even when working alongside my studies, I had to put more money into my Arts materials than clothing materials and then there’s the practicality and durability issues that prevail. I don’t feel the need to do designer labels and often can’t afford to. I only ever did trainers and jeans in this way really. I’m a bit anti fashion in that way but love seeing how others do it from magazines to ‘Sex & the City’ & ‘Ugly Betty’ TV, to being online aware of fashion labels and whose wearing what from royalty to film/music and celebs, it interests me in a visual identity way rather than I have to have or be this, that or the other.
Clothes were highly practical for me as a child and have been again during my shaky health decade of mid 30’s to my 40’s as operations and chronic pain meant being curled up in my pyjama, leisure and casual wear so often. Often still is at home but then I re-emerged to exploring my image again which I guess is less about fashion and more an extension of my Artistic self with my palette of clothing but with styles & fabrics influenced by my skin comfort and the practicalities of my ichthyosis.
I have an identity of my own facilitated by choosing from what us an array these days of clothing style and my wardrobe echoes all eras of styles, colours, patterns and who I have evolved to. I still have hoodies to jeans of variable styles, to leggings both plain and patterned, as well as tops and shirts etc. I layer for comfort and practicality often with vest camisole base layers through to the sleeve and leg lengths that compromise my skin confidence and wellbeing. I’m a big bargain hunter (budget has often dictated and I have bought items via charity shops, well before it became fashionable to do so!) but have bought one off good quality items of clothing/accessories to compensate.
I have had a more complicated and compromising relationship with my image and clothes and fashion than I used to think, as we all have in the Western world and the eras of our lives and who we are influenced by and self expressive.
I have my own image that is often different from my Sisters who seemed to trail blaze ahead when we were teenagers and now have more conventional styles, whereas I probably underestimate how many boundaries I pushed, to be at an age and stage more at ease within & beyond my skin. Not bad for a relatively non fashion’ista gal!”
“I just wear what I want and what feels good. I love to find fun clothes at the second-hand store and mix and match. I usually don’t mind showing off my arms even if they are dry but I tend to keep my legs covered if they aren’t great. I try not to let me skin dictate anything I do, so I got over not wearing black or dark colors. I think it can be a challenge to find good sweaters because they can be scratchy and dry me out. In general, I don’t consciously think about my skin when I dress. I just wear what makes me happy.”
“I try to stick to clothes that like wearing but I tend to wear leggings and vest underneath so that the cream does not come though the clothes as much.”
“I dress very warm, but I do not like to try on clothes at stores; very self-conscious about flakes, etc, getting on items. I also have to stay away from certain kinds of materials as my flakes/skin sticks to it like static cling does and it is embarrassing. Not in recent years, but years ago I have actually ended up buying clothes I have tried on because my flakes stuck to the inside of the item, for example dress pants. I now know what kind of materials I can wear and as a rule I do not try on anything in the store; I buy, take home, try on, and return if not suitable. I do not wear sleeveless tops unless I am wearing a cozy sweater over it (not wool); and I stick to dress pants for the most part now so I can wear footless tights and wear nice warm socks; no pantyhose as it makes my feet very sore and break out. How is that for being honest but not pretty. Thanks Carly Findlay for all you do, you truly are special and have made me more open about my skin condition.”
“Wearing shorts or a tank top doesn’t bother me, but I am careful to pick fabrics that don’t snag on my skin or rub a lot at the joints. I do tend to veer away from black shirts because they show the flakes so much, but I’ve never found black to be flattering for me anyway (makes me look pale) so no big loss there.”
“Though I have a lot of confidence in my general appearance, if my legs and arms are too flaky I refrain from shorts and short sleeves without leggings or a long sleeved cover. Any materials that snag, rub my skin, or that are too tight on my joints are a no-go. I wear jeans most of the time or long skirts, but my favorite thing comfort wise is cotton sweat pants As far as colors go, I wear dark colors despite the fact that I flake a bit. I just brush it off.
Another thing about clothes that doesn’t concern style so much as oiliness: A trick I’ve found that works to get the oil out of my clothing is when I put my clothes in the washer, I use regular detergent along with just a little bit of Dawn dish soap. It makes my clothes fresher and not so lotion-y.”
“Just like Gina we use a squirt of allergy friendly dish liquid or my husbands truck wash in with family’s washing brings all the greasy marks off.
For a baby and child I try and pick light weight cottons. I try to steer away from thick heavy denim or cord, so that it’s not right against her skin rubbing or restricting movement. I also try and stay away from button up shirts or things with snaps at the front as she undoes them to try and scratch causing bleeds. Current fashion thin cotton play suits are perfect for this purpose. I like 3/4 sleeves and legs to try to combat the temperature especially when sitting in the pram. I can keep the liberal creams up to those bits that really dry out to try and help with itching and appearance .
I try and avoid silks and satins and silky nylon/cotton, they have this year in department stores as it oils and soaks quite quickly .
Organic Bamboo, which a lot of the eczema kids ranges and Organic Bonds are made from really irritate her and seem to make things worse.
Jr Kaftans I’m hoping are going to be our friend this summer, light weight but full length .”
“I absolutely love fashion! I’ve never been worried about “covering up” to hide my skin. One comment I got from an 80 year old lady who had ichthyosis was that I was the first person she met with ichthyosis and she was in awe that I would wear shorts and tank tops. I love wearing lots of different things, jeans, shorts, dresses, long skirts, short skirts, crop tops, tshirts, sweats, sneakers, flats, high heels, boots, etc. There are times I will refrain from wearing a dark colour if my skin is shedding worse than normal or if I just don’t want to deal with the constant brushing it off. Sometimes the transition between winter and spring is a challenge, since it is warmer weather out but my skin is the worst it’s been all year because of the dryness of winter. I am a little more self-conscious then but still don’t let it stop me from wearing what I want. When I do shop for clothes, I make sure I feel the fabrics because some do stick to me or show my skin really bad. On a side note, leotards and tights have always been fine for me in dance as well. I’ve lived in them for 15 years now!”
“I’m not really into fashion, I just wear whatever is practical for what I’m doing. Everything from togs to swim laps, to suits as required for work or social functions. It doesn’t bother me how much of my skin is on show, I don’t even try to hide my ichthyosis.
Here is a photo of me at McHappy Day last year. The clothes make me feel good because the Scout uniform represents a lot of how I try to live my life and the loud footwear/socks show that I have a very cheeky side (especially when helping others).”
“I’m like Bailey and love fashion! I don’t worry too much about coverage of the clothing, but I concentrate more on the fabric. My dry arms often cause the fabric to pill, similar to a sweater, which is uncomfortable and doesn’t look right. I stick to soft fabrics that when I touch don’t grab at my skin!”
“My primary goal is to be comfortable with the clothes that I wear. I prefer cotton next to my skin especially in the warm weather. This also helps to keep eczema to a minimum. I am comfortable with wearing dark colours as long as my skin is not too flakey. I have become more daring this year and just did not worry so much when I wore shorts. It’s my skin and it is what it is… But it has taken me this long to feel this brave. And part of my increased courage is due to you Carly! Love reading your blog!”
“I don’t follow the trends as I don’t want to be the same as everyone. If I see something I like i’ll try it on and buy it if it looks great on me. I don’t think about my Ichthyosis at all. I’m addicted to shopping abroad! I wear what I want. I’m happy to wear bikinis in front of everyone when on holidays only when it’s warm! I wear fitted and loose clothing depending on its weather, not because of my Ichthyosis.”
“My mom would wear old clothes when she was creaming me. She did not to ruin her good clothes. My clothes always got washed separate from everyone else so the grease from the cream never ruined them. Dark colors were never worn with me living in the house because of the scales.”
“I’ve noticed that having scale on my clothing after a big hug with Hunter is no big deal anymore. When she was little, I was highly aware of it and would often try to brush it off. That being said, and being the fashionista that I am, I never remember wearing stuff that hid her skin on me.”
“My focus in clothes is comfort! I often use soft hooded sweaters, soft jeans/jeggings and sneakers. I can never wear silk – my cream is too greasy and stains the silk in no time. But I always use nylon stockings when I’m wearing a skirt or dress. Almost all my everyday clothes like t-shirts and other underwear is washed in 60 degrees – yes it will ruin them slowly but it’s worth it.”
“Love this topic!! Buying clothes for my 17 month old son Alfie is hard…will it be comfortable, will he be too warm/cold, is it easy to get on/off without ripping the skin, are there any bits that will cause a blister. We stick to joggers and t-shirts & jersey sweaters. No wool, no rough materials. The elastic eventually goes in trousers, I sew in drawstrings instead. Socks are an issue, they cause blisters on the ankles so we use tubifast bandages under socks. All his clothes get washed separately on a wash that steams the clothes. We wear old t-shirts or pjs when doing bath/creams. X
These are jersey joggers and sweatshirts – typical if we’re at home. Then the bottom one is jersey lined jeans with elasticated waistband & drawstring (for when elastic goes!). The cardigan is knitted but is not wool – its made of cotton yarn so no loose fibres and not as hot.”
“My unaffected daughters (4, 6, 9) wear one of Daddy’s old t-shirts when they hold their baby brother. It protects their clothes from grease and spit-up. We also keep big t-shirts around for friends who stop by in nice clothes and want to hold the baby.”
“Definitely natural fibres….and yes the embarrassment of the snow storm sometimes left behind after trying on clothes can be tragic, especially if you don’t want to buy it!!”
“I aim for comfort so I’m a jeans and t-shirt kind of girl. I wore a short sleeved wedding dress after a lot of thought because I figured that all the guests knew me and didn’t care, plus it looked awesome. As an adult I’m much more comfy wearing shorts etc in public but as a kid I liked to cover up more.
Nylons are a pain with blisters so I’ve stuck to pant suits for work.”
“I have found silky fabrics are bad, every time I’ve had any silk or synthetic silk things then I get infections, apparently it’s because the skin can’t breathe. My cream affects lighter colours I won’t wear white or yellow as my clothes become see through (never a good look haha). I find I have to wash my clothes in a hotter wash in order to remove the cream properly. I don’t find this too much of a problem as most things are surprisingly resilient to hot washes, although I try to avoid hand wash and dry clean items.”
“I learned when my Carlie was little that black was not a good colour to wear. The flakes show up on the black really bad! She prefers to wear things that are loose on her tummy since she has a lot of issues with it. But she also likes to be fashionable. She doesn’t mind to bear skin when it’s warm enough for her to do so without freezing! The aquaphor ruins clothes and especially the elastic in clothes though.”