16 June 2016

Me Before You - disability as a tragedy and the laughing able gaze.

This post discusses suicide. If you need to talk to someone, please call Lifeline on 13 11 14, or QLife 3pm-12am on 1800 184 527, or the equivalent support service in your country. It also contains spoilers about the book and the film Me Before You.

 

Me Before You is released in Australian cinemas today. I saw the film last night (at a special 'girls' night out'), and have read the book. (Yawn!) However, I had formed an opinion about the film before I had seen it, based on others’ valid commentary, and my own experiences and insight into disability themed and led media.

Me Before You, based on JoJo Moyes’ 2012 novel, is the story of the relationship between Louisa Clark (played by Emilia Clarke) and Will Traynor (Sam Claflin). Louisa takes a job caring for Will – who became a quadriplegic due to a pedestrian accident. Will was a high flying money maker, and gave that up since the accident. He wants to end his life in six months, and Louisa tries to show him that life is worth living.

Louisa is perky and quirky, saying mildly humourous things that I found ironic when juxtapositioned next to disability. "There isn't much that can't be solved by a cup of tea", she told Will early on. Well, how about attitudes towards disability? Employment rates? Accessibility? Internalised ableism?

The film has been marketed as a romantic tear jerker. As my friend, Kaitylyn Plyley, podcaster extraordinaire said, "Girls night out. Watch a disabled man die. I don’t know what these cinema marketers think girls do on nights out." My film-buddy Kath (who giggle snorted throughout the screening) called it a "woe-mance". Also, in one scene, Joanna Lumley's character said "one can't do these things sober", and I wished I had a drink to help me through.

The main message the film conveys that death is a better option than living with a disability. Will ends his life because he has a disability. That's the only reason. He cannot live differently to the way he lived prior to his accident. He has the wealth and support to live a comfortable life - which many people with disabilities don't have.

The film highlighted the expectation of a non-disabled person to be a hero, to save the disabled. Louisa took care of Will and she learnt a lesson. She told him that. She needs him to be a better person. Disabled people are not your teaching moments.

There is also the issue of a non-disabled actor cripping up, the portrayal of disability as a tragedy, and the way our response has been shushed by non-disabled people.

There's not much to say about Me Before You that hasn't been said by my fellow disability activists already. For one of the first times that I've known, the collective voice of the disabled community has been hear loudly. As Buzzfeed headlined, The "Me Before You" Backlash Was Bigger Than Anyone Expected.

Seventeen year old Stella Barton wrote an excellent piece this week on why she won’t see the film.

Dominick Evans has written about the problem of Hollywood telling us it’s better to be dead than disabled, and led an excellent campaign on Twitter.

Twelve year old Ella Frech wrote an open letter exploring themes beyond her years, asking "Dear Hollywood, Why do you want me dead? Please don’t deny it. The movies you make tell me the truth about what you really think about me.".

Jax Jacki Brown explained her concerns for young, vulnerable people with disability getting the message that death is better than being disabled, and also about the protest we are holding tonight.

There are also the brilliant Huffington Post and Karolyn Gehrig articles, from which I’ve quoted towards the end of this piece.

And the Center for Disability Rights in New York created a video showing just how many films feature the same narrative that death is better than disability, and assuring disabled people their lives are worth living. The disability-led commentary has been amazing.

Despite our loud voices, there's still shushing from the non-disabled, telling us what the film is about, and how we should feel about the film.

The film's director, Thea Sharrock, believes the activists anger is a "misunderstanding".

Writer, JoJo Moyes (who also wrote the screenplay) said you can’t judge a character "unless you put yourself in somebody’s shoes". Many disabled people are in Will Traynor's shoes, JoJo.

Actor, Sam Claflin didn’t even want to engage with the disability activists during his chat on Twitter, ending the chat early.

And the online commenters - ablesplainers - are telling us to get over it. It’s just a film!

When I first wrote about the film on my Facebook, and shared links to others’ writing, I was told that I had to watch the film to make a proper judgment. My lived disability and media experience didn't count. I was told that it wasn’t REALLY about death being a better fate than a disabled life, and disability hasn’t been portrayed as a tragedy – Will was just an arsehole. So much ablesplaining.

Oh, but it's just a book and a film. Relax, it's fiction. So, what’s the problem?

Popular culture has a huge impact on the way disability is perceived. And in this case, the book and film has portrayed disability as a tragedy. Many readers and viewers will get their perspective of disability from this book and film, yet won't even interact with an actually disabled person. They won’t see that a person with a disability can have a joyous, pride-filled life.

Readers and movie goers are crying over Will Traynor's death, yet are they crying over the barriers and discrimination actually disabled people face in our everyday lives? Do they know about the low employment rate and poverty experienced by so many, and what are they doing to change that? How are they changing their low expectations of people with disabilities if they regard Louisa as a hero for caring for Will? (I am amused that art imitates life, and Louisa has zero qualifications to care for Will.)

(Just on low expectations, I've been thoroughly researching what people have said about the film. I listened to a podcast that reviewed it, and one of the hosts thought the portrayal of Will was unrealistic because of his disability. He was too attractive for a man with a disability, she implied. She went there.)

I'm concerned the only exposure to disability people will have is through a schmaltzy, fictional depiction of us. They see 'us' through the movies, and they cry. And they laugh at our disabled quirks. They see us in real life and they pity us, or other us, and never get to know that our lives are worth living. Are they even getting to know people with disabilities away from popular culture? The able gaze is narrow. People are fascinated by how we move, eat, think, have sex, and can be loved, and they look away quickly. It's easier for readers and viewers to get to know disabled people from the comfort of seeing us through fictional characters, feeling like they’ve learnt something about disability just by consuming Me Before You.

While watching the film, I paid attention to the audience's reactions. The audience laughed at the severity of Will's disability symptoms - like spasms and voice, and any scenes that hinted at love and sex. Was that funny for them? Awkward? A bit gross? Can a disabled person even have sex or be found attractive?! (That question was evidently on people's minds from the laughter I heard.)

The saddest thing for me during the film was hearing the audience laugh at how inaccessible the race track was for Will's wheelchair. It sunk into the muddy grass and he looked frustrated. Help was called. This inaccessibility is every day for disabled people. And the audience laughed.

The laughing able gaze was sickening while watching the film last night. There was more laughter than crying - perhaps the audience didn't see disability as a tragedy, just an awkward thing to laugh at? As I live-tweeted the film, my Twitter followers told me they were disturbed at the audience's laughter, too.

Karolyn Gehrig wrote about the able gaze in her brilliant piece – perhaps my favourite among the Me Before You commentary:

"We see you. You do not see us.

Nothing I do transcends disability. It is deeply entrenched in every thought, action, and interaction. To deny its inextricable nature is to dismiss, shirk access, make the world more unforgiving for me, and those in my community. Especially those who do not yet identify as members of the disability community, out of fear or self loathing. Those who might "want to see Paris, but as me." You do your companions no favors by rendering disability so flat."

I do wonder if all those people who support the tragic narrative of disability and cripping up by non disabled actors would go see theatre, films, music and art made by actually disabled people? Would they see our take on disability, or prefer Hollywood and airport bookstore schmaltz?

Another issue is Sam Claflin cripping up (a non-disabled actor playing a disabled person). Ablesplainers say "BUT IT'S ACTING. THEYRE PLAYING A CHARACTER. THEY ARE PRETENDING TO BE DISABLED."

The role could have gone to an actually disabled actor. Most likely he will win some sort of award for being a hero and playing a disabled character. As Scott Jordan Harris wrote:

"Able-bodied actors should not play disabled characters. That they so often do should be a scandal. But it is not a scandal because we do not grant people with disabilities the same right to self-representation onscreen that we demand for members of other groups who struggle for social equality" .

There are so many disabled artists who could play have played the role of Will Traynor. Blacking up is not acceptable in film and wider society, so why is cripping up?

I also want to acknowledge that not everyone feels the same way about the film as myself and other disabled activists, especially around the theme of assisted suicide. As Holly Warland wrote in her very articulate piece on Daily Life:

"I see the character's decision to end his life on his own terms empowering. I'm in a very unpopular section of disabled society who believes in the right to assisted suicide for those competent enough to make the decision for themselves. For full disclosure, I will reveal that as a 24-year-old woman with Muscular Dystrophy (this involves the deterioration of my muscles from the chin down over time and means that I rely on 24-hour care), I plan on taking my own life once my disability causes me more grief and anguish than I feel is worth living for."

It’s a very complex issue, and I respect all views. If it comes to the time when my skin is too painful to bear and my quality of life is reduced considerably, I hope I have the choice of voluntary euthanasia. However, like Jax, I do worry that the message of this film might prey on vulnerable people with disabilities, it might make them think they are better off dead.

I don't have an acquired disability, and I don't have the type of disability Will Traynor has. The physical barriers he and so many of my friends encounter are not my experience. But I do have a disability, and experience the same attitudinal barriers he and my friends experience. I've also experienced that internal ableism he feels - for a long time disabled was the last thing I wanted to identify as. There was a time when I was young that I wanted to die, life was so isolating. And I've had people tell me if they'd were me, they'd kill themselves. This has happened a few times.

I was on a date once. He was nice - academic, good at making conversation and funny. I was gazing at the way his hair flopped over his forehead when he told me if he looked like me, and had my skin condition, he'd top himself. He couldn't handle me publicly telling my story, he wasn't comfortable with me being proud. And he thought my life was so hard it was easier not to exist. This hit home how others see us, how Hollywood sees us. Lives not worth living. And I don’t want that to be the message that keeps on being perpetuated.

(Some friends did a fake fundraiser outside a Perth cinema last night, asking people to donate to send them to a Swiss suicide clinic, like Will did in the film. People donated, without question. This is very disturbing. People thought my friends were better off dead.)

Many people within the disability community are angry about the book and film. But we’re also angry about how we’re being told to feel about the film. It’s the same old case of being grateful disability is even covered, of having our feelings and life experience invalidated. Mik Scarlet so eloquently wrote for the Huffington Post:

" Throughout the comments sections of blogs and articles explaining disabled people’s views are non-disabled people telling us we’re wrong. Not just about the film but pretty much whatever we’ve said. Our real life experience is nothing compared to stereotypes and beliefs of those who can only imagine how they might cope with impairment. Hence a debate around a work of fiction has become something bigger. To me it has now opened the lid on the truth behind how society sees disabled people. The key message from the recent protest around Me Before You is disabled people should just be happy that good intentioned people are trying to do something for us, with no experience of what it means to be us, and without really talking to us. We are not allowed to be experts in what our lives are like, or what we want? The mantra of all campaigners for disabled people’s equality is "nothing about us, without us" yet this whole furore has proved how far we have to go to achieve this goal."

One of the most poignant passages of the book for me was the part following a day out of the races - tiring from inaccessibility and staring. It particularly resonated with me because of so much of the shushing that's gone on towards the disability community. It is such a true example of people speaking for us, over us. Perhaps JoJo Moyes had a premonition that we, too, didn't want someone else telling us how our lives should be run.

" ‘Is … something the matter?’ I said, when he failed to respond to my third comment about the local news.

‘You tell me, Clark.’

‘What?’

‘Well, you know everything else there is to know about me. You tell me.’

I stared at him. ‘I’m sorry,’ I said, finally. ‘I know today didn’t turn out quite like I planned. But it was just meant to be a nice outing. I actually thought you’d enjoy it.

I didn’t add that he was being determinedly grumpy, that he had no idea what I had gone through just to get him to try to enjoy himself, that he hadn’t even tried to have a good time. I didn’t tell him that if he’d let me buy the stupid badges we might have had a nice lunch and all the other stuff might have been forgotten

‘That’s my point.’

‘What?’

‘Oh, you’re no different from the rest of them.’

‘What does that mean?'

‘If you’d bothered to ask me, Clark. If you’d bothered to consult me just once about this so-called fun outing of ours, I could have told you. I hate horses, and horse racing. Always have. But you didn’t bother to ask me. You decided what you thought you’d like me to do, and you went ahead and did it. You did what everyone else did. You decided for me.’

I swallowed.

‘I didn’t mean to –’

‘But you did.'

He turned his chair away from me and, after a couple more minutes of silence, I realized I had been dismissed."

So relevant, hey? (The movie left the race scene in, but skipped Will's assertion that he preferred not to have someone else decide what he wanted - I thought this omission weakened the film, implying others did decide what Will wants without asking. Of course, he was adamant that someone else didn't decide he should live on, live boldly.)

Will chose to die when he seemed most content. Loved by Louisa, surrounded by family. That's his choice, although it contradicted the so 2016 hashtag for the film - #LiveBoldly. But it was his informed, consenting choice, a complex one that was far too deep for a PG rating. The film ends with dead Will 'reading' Louisa a letter as she's in Paris (living the life he yearned for). "Live well" he told her. Yet Will didn't take his own advice.

There do need to be more films made about disability. But we need to be consulted in the creative process too. For us, this fictitious story is more than just a film we should get over. It’s a reflection of the low value and expectations society has for us.

There are people with disabilities who are not happy with their lives, and this is a valid, complex reality - I don't want to dismiss their feelings and decisions. But tragedy is not the only story about us. Disability should be an incidental part of a character’s life. Film makers need to show that for many people, disability is a proud part of our identity. We belong to a strong community. And our lives are worth living. Pride is a story.

Live well. Even with a disability. Because you can.

We are protesting Me Before You in Melbourne tonight. Come along to the Jam Factory from 6.00 pm if you're interested. Details on Facebook.

Did you like this post? Did it help you? Please consider buying me a drink!

Edit: here is some media I did around our protest.

I wrote a piece for SBS Life.

I was interviewed on ABC World Today and a different version on ABC news.

Quoted in the Sydney Morning Herald.

10 June 2016

Of child bearing age. At the doctor.

I went to the doctor with a pain in my head.

An ongoing headache.

She looked in my mouth twice, poking my tongue with an unsweetened paddlepop stick. I looked at the wall, lined with anti-obesity posters, as she took my blood pressure. I hoped she wasn't going to ask me to weigh myself.

My blood pressure is perfect. I was sent home with a script and instructions to take paracetamol. Come back and see her if the headache deteriorates.

After her observations, she engaged in small talk.

"You still working at the Office?"

"No, I work for the Department now."

"And things going well otherwise?"

"Yes, I got married in March."

"Are you planning to have children?"

"We aren't sure yet."

"Well make sure you come to get a checkup, three months before you start trying."

She glanced at my file. 34 years old.

And the small talk became big.

"Don't leave it too late, there's a strong risk your baby will be born with a disability."

I just got married five minutes ago, and now babies are a common discussion topic. It's been strangers asking nosily, but this time, it was a doctor because of her duty of care.

I smiled meekly, remaining silent. I hoped she'd stumbled across my work sometime. My writing on disability pride. Seen me speak, or perform. Spent time with my people.

But her head was probably in books about the medical model of disability. Diagnoses and grieving for a life lost.

I don't even think she realised there's a small chance of me passing on my genetic condition. Because no one seems to want a baby born with that other disability.

A baby could be born with any type of disability. And anyone could acquire a disability at anytime. It's a life lottery.

And then I wished she had the perspective of disability that I do.

That disability isn't a tragedy or a burden. Not a life sentence.

That can be a strong, positive part of identity.

That disability is not the worst thing that could happen.

And, did she forget that I too identify as having a disability?

Every woman of child bearing age must get this talk. Women with all sorts of perceptions about and exposure to disability.

I told my husband about the doctors appointment when he arrived home. Mentioned the headache, and we argued about the official term for a medical paddlepop stick. It's a tongue depressor, he said. I told him about the family planning discussion. He groaned. He also knows disability isn't the worst thing that could happen. And I loved him so much at that moment.

I just wanted to stop my headache. But now my heart aches from that brief discussion about the risk of having a baby with a disability. The discussion was not about fertility and how much time I have left to maximise my chances of conception. It was about disability.

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06 June 2016

Speaking Out by Tara Moss (I'm a contributor within!)

 

About a year ago I sent Tara Moss a link to a piece of writing I did, as I thought it was relevant to something she'd just discussed. I'd admired her writing for a while, excited to see her win blogging competitions. Since that day, she's been incredibly supportive of me and my work. Tara and I haven't met in person yet but we will meet when she comes to Melbourne this month.

Tara does great work in writing about feminism, speaking out about domestic violence and refugees, and deflecting the criticism received online. Remember when she went to a Syrian refugee camp, and all the comments were about her red lipstick, not the way she was helping people? She defended her choice to wear lipstick so articulately.

Late last year she asked me to contribute to her new book 'Speaking Out - a 21st century handbook for women and girls'. I was so flattered.

It arrived in the mail on Saturday, and I had tears of excitement. I've had a good flick of Tara's book - it's so well written and researched, and a great resource for online writers and public speakers - and women and girls in all sorts of industries.

Love. Thanks Tara! ❤️

My piece mentions how hard some criticism of my work can be, and how I manage self care. I speak out a lot - much more now than I ever did. Lately it's gotten me shushed, unfriended, blocked (especially if I mention disability slurs to people who just don't get the impact of them). I try not to let it worry me, but it's hard. Speaking out has also afforded me contact with amazing, likeminded people, so it's not all bad!

Never be afraid to send your writing to someone you admire. Look where it got me!

Synopsis from Harper Collins:

"An accessible and practical handbook for women on speaking out safely and confidently. Worldwide, less than one out of every four people we hear from or about in the media is female, and men outnumber women in parliament by more than three to one. If half of humanity's experiences, perspectives and possible solutions to world problems are under-represented, or entirely unheard, all of us lose out. Tara Moss has spent 20 years in the public sphere and has had to face down nerves, critics and backlash to emerge as a leader in speaking out. In this handbook she offers advice on preparation, speaking out and negotiating public spaces. With a special focus on public speaking, writing, social media and online safety, she offers tips on how to research, form arguments, find support and handle criticism. This is a guide for women young and old that not only helps them find their voice, but argues passionately for why it matters."

Buy Speaking Out at Booktopia.

 

 

03 June 2016

"When are the babies coming?"

 

When I tell people I've just met that I'm a newlywed, a common question is "when are the babies coming?" I reckon I'm asked this twice a week.

Adam and I went out to an event four days after our wedding and five people asked us about babies. It was awkward.

These questions have made me feel "normal, just like everyone else" because many friends have told me they were asked about their plans to have kids immediately after their wedding too.

But what people who ask these questions don't think of is that having children might not be as simple for me as for other women.

And they might not realise there have been people in my life who have told me I shouldn't have children due to the (low) likelihood of passing on ichthyosis. Oh, they have.

Sometimes strangers have asked me this, with their hands waving around their face in the universal language of "I don't know what to call it".

They ask, "What's the likelihood of you passing on your condition to your children?" And it's awkward because until recently I hadn't had that conversation with Adam, or my geneticist, and people are so damn judgmental of someone with a disability passing that disability down to their children.

Also, the desire (or not) to have children should not take away from our existing and future achievements.

Sometimes I get clucky when I see babies and baby clothes. And then I hear a screaming kid and think that I like our current low-responsibility life.

If women want to have babies and openly talk about it, we should be able to. If we don't want a family, we should be able to talk about our choice; or not. And if it's complicated - we shouldn't be expected to go through the pain of explaining why we can't have children or gritting our teeth and smiling at these well meaning conversation starters.

I'm not comfortable being asked when we will have children. Next time I'm asked, I'm going to say this - that I'm not comfortable discussing babies - instead of politely smiling and saying "maybe one day".

(I wrote this last year, it's about all the things I think of around having a child.)

(Picture: closeup of Adam holding my hand, close to my tummy, I'm wearing my wedding dress, he's in his suit. It was taken by Fresh Photography.)

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31 May 2016

9 Instagram stars who have Ichthyosis. (And please consider buying me a drink!)

9 Instagram stars who have Ichthyosis

A while back I wrote about the ways you can use instagram to connect with the chronic illness community. And my mate Starbrite Warrior wrote about this too. It's so ace to connect with others who know what you go through, isn't it? And Instagram is a good platform to use when you're not feeling great - as it just requires a thumb for scrolling, and some emojis if you're not really up to typing a lot! Also, taking selfies and sharing photos can be great for the self esteem of people with chronic illness and disabilities. What's not to love?!

I've found some great people who have Ichthyosis on Instagram - and I LOVE seeing their adventures in pictures.

As a part of Ichthyosis awareness month, I contacted them to ask if I can showcase their instagram. They all said yes! Here they are in their own words. They are so interesting and smart and I love them all. And they are all BEAUTIFUL. Go show them some love. (And I'm on Instagram -@carlyfindlay.)

@Clonecollector

 

"I suffer from a lot of other illnesses and currently just diagnosed with elhers danlos syndrome. Quite interesting because I don't see Ichthyosis Vulgaris and elhers danlos syndrome cases.

I'm from LA, but I have family in in Alabama also on my fathers side. I love going to the beach and it's become harder and harder due to photosensitivity and other medical conditions. I used to play tennis competitively until I could no longer.

My last diagnosis waselhers danlos syndrome, which has been invading my life in the physical, effecting my mobility. I plan on advocating Medical marijuana and cultivate my organic hair and skin raw line.

I've been taking care of my skin and hair needs due to deficiencies with my own remedies that I can't wait to finally share this year. I have very neglectful parents and I was on an 8 year quest after leaving the radiology dept on medical leave to find out what was goin on. I have a rather large medical web of things going on from lupus to dysautonomia to ichthyosis. I finally got diagnosed after several doctors had seen me all of my life, in May 2014."

@2PuenKtchen

"I am 27 from Germany. I'm a special education teacher. Happy, blessed christian girl from Germany. My faith keeps me strong because I know that Jesus is nothing but good. I know that he made me perfect! I am not a mistake. I am wanted.

I love my hair. They are growing since 2 years.

It's such a difference having long hair as a woman.

I love to laugh. I live to be joyful and I have so many reasons foor being joyful: I have the best family and greatest friends."

 

@Bumblebeemick

I'm Brittany - I'm 28 years old. I didn't know I had ichthyosis until I was college every dermatologist I went to said I had eczema clearly I don't lol. Since I was little, my mom made sure to tell me that I was beautiful and God made me the way he wanted to make me. She also made sure I looked in the mirror and tell myself: "I love me". And because of that I truly love myself and am grateful God chose this path for me.

I'm also a lover of fashion. I love to read & spend time with family and friends."

@Kiavvyeh

"My name is Kristin. I am in Alabama, USA where I'm a phd student in composition and rhetoric in English studies.

And... I dream of making higher education more accessible to those with disabilities. That's what my research focuses on, and how I combine advocacy with my professional work."

I love Kristin's dream!

@TinaSmith13

"I'm from Kansas. I have EHK. I was adopted by two awesome people who also adopted my bro who also has a disability.. I work a lot, mostly different photography and make-up projects. Plus a caretaker for a friend with CP. Side work Right now I'm slowly working on a documentary and YouTube project about living with ichthyosis. I do a little modeling gigs. I like to keep busy. :)"

@MissBrianna_Jane

"I am 26 years old, born and raised in Melbourne. I have congenital Ichthyosis vulgaris. I love to travel and try new things.

I work full time and study full time doing my bachelor of business major in event management. :)"

(I met Brianna in April and we could not stop talking. So great to meet her - friends for life!)

@K.Idella_

 

Kelly featured on my blog last year. She's in her 20s and lives in Missisippi. I love the confidence she exhudes. She's developed so much confidence and has been doing a lot of great things to educate people about Ichthyosis, and development her sense of style and self worth. Just recently she did her first modelling show! So proud!

"When you go from, "You're stanky." Or people not wanting to touch you because of your skin. To hearing, "You're beautiful." Or people wanting to meet me because of the awareness I've been spreading. This is the transformation of all times. Skin always been poppin'. Just have the confidence to say it. #YouCantTellMeWhatGodWontDo #SkinOnFleek ❤️😘"

I LOVE THIS!

@RafJonathanTan

"I'm 20 by this Dec. I like playing music and listening to music, I use instagram to connect with friends. I live in Malaysia."

 

@Fiqasani

"My name is Syafiqah. I am 26 years old and im from Malaysia. I am doing online businesses, i am selling scarf and life insurance policy.

I like to explore new things in life so that I can be more adventures in the next time.

I like to buy things online too!

I like to feed stray cats - I am a cat lover. Do check my stray cats Instagram @kucingjalanannn which stands for stray cat 😁

The reason I love Instagram so much is because I can see my families and friends new updates."

I adore Fiqasani's fashion!

Hope you enjoyed meeting them as much as I did.

Also, please note that before trying any treatments my friends have mentioned, talk to your doctor and psychologist. There are many variations, symptoms, appearances and seventies of Ichthyosis and what works for one person might not work for others.

❤️

This is the last post for Ichthyosis Awareness Month 2016. I hope that I have done more than raise awareness, and made you think about acceptance (of self and by others), and the media representation of the condition, and introduced you to some great people. I've got some more posts about Ichthyosis coming year round - thinking critically of course.

You can read this year's posts at:

Ecdysis. Tender soles.

Vereniging voor Ichthyosis Netwerken

How to cope with the emotional aspects of Ichthyosis - advice from people with the condition

Choosing clothes to accommodate ichthyosis

Crystal's video

Using Moo Goo cream to de-scale the scalp

When the media directs you not to google Ichthyosis (and what I'm doing to change that)

Rethinking Kindness - True Blue Hand

Ichthyosis Awareness Month 2016 - we must move past awareness raising

And catch up on the 2013, 2014 and 2015 posts.

Thank you for reading about Ichthyosis again this year - I hope we've moved past awareness.

❤️

I have a favour to ask, please.

You know, I've been blogging for quite some time. Almost seven years here! And I am really proud of what I've produced. There are some great resources here for you - scores of posts about Ichthyosis and appearance diversity that are really helpful. I know this because you tell me. You search for and share the posts, and I'm so grateful. Thank you.

Apart from the very occasional sponsored post, I don't get paid to write this blog. I spend a little money on the blog - online storage, apps, graphics and getting people to edit my posts when I'm really busy. I come home from my day job to write because I love it. There's a lot of time involved in blogging - this post took me four hours. Most posts take me up to five hours. I also manage social media and answer countless questions asking for advice about Ichthyosis and general disability issues. People ask me to help them with blogging and socials media. My blogs are used as classroom and business resources. Sometimes I am asked to edit work or give interviews. These are GREAT OPPORTUNITIES but take time and expertise.

I've been listening to a few podcasts talking about backing ourselves, and asking readers to show us they value our content by paying us what they can afford. So that's what I'm doing today.

I am thinking of setting up a Patreon (crowdfunding) account to support my blogging - so I can continue bringing you quality content, and spruce my online home up a bit. I plan to finally make this a dot com! I can keep writing but outsource the stuff I'm not good at. While I look into Patreon, I've signed up to a PayPal business account (I have an ABN and everything!).

I ask that if you value my work, if it's been useful to you in any way, if it's made you laugh or cry, and can spare a few dollars, you might consider supporting me. Think of it as buying me a drink. (It can be a cocktail, a wine, a hot chocolate or even a bottle of water!)

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30 May 2016

Ecdysis. Tender soles.

I was reading about how angry snakes get when they shed their skin. One animal carer said he observed a skin-shedding snake to lose most of its vision and wouldn't let anyone near him.

The process is called Ecdysis. Ecdysis is a necessary process for growth and movement, and happens to snakes, lizards, turtles and iguanas. These animals go off food, and they're very sensitive to touch during and after the shed. And I expect dinosaurs experienced ecdysis too. Imagine how angry they'd get during a shed?!

Every year and a half or so, my body undergoes a big shed, not just the daily shed. Sometimes it's fully body but usually it is limited to my feet and hands. This shed often means my skin comes off in big pieces - in the shape of my hand or foot. Ouch. (I've written about the big peel here.) My appetite is still the same, of course!

People with other types of Ichthyosis shed big prices of skin more frequently than I do. I'd rather not scrub to peel because it hurts - it thins the skin and leaves it burning. So many different variations, symptoms and treatments for this condition!

Right now my feet are shedding. It's a slow process - it's been happening for about a month. Each time I arch my foot or take a step, I am acutely aware of my skin. My feet tingle as the old skin comes away, making room for the new skin.

The old skin stretches and shrinks. It's like milk skin. Strudel pastry. Thinly rolled pizza dough, before it's been topped and baked. Though not delicious, because it's on my feet.

The new skin is initially soft and supple, but it's a long wait. By the time I lose the thick layer, the new layer is almost as hard as the old layer was.

I don't know what it's like to have skin that isn't painful or scaly. I do know that when my body is comfortable, I can't feel specific organs like I can feel my skin. I asked Adam this question - whether he can feel his skin? He said he knows his skin is present, but it doesn't feel a certain way. It just is. He said he notices his skin is there when it peels.

I feel so aware of my skin - the way it shrinks and tears, and flickers with itches. The way it cracks and bleeds and flakes. The way it stretches over my face in the morning, making me hide away from the world. I'm embarrassed at the way powders all over my work chair - screaming "Property of Carly" - and no, black wasn't the idea colour for a piece of reasonable adjustment equipment. I'm 10 times more embarrassed when it falls below me in the work bathroom, like talcum powder. And it flings all over the shower walls when I wash my body. I wipe it down so it doesn't gross others out. Skin, hey?

When I'm relaxed, my feet are curled inwards, like they're emerging from being bound. There's daintiness in them, but no beauty. They're like half peeled potatoes.

Occasionally I give them a salt bath, and then gently bandage them - breastfeeding pads below thickly applied antiseptic cream cushion my tender soles. And I am a tender soul during this ecdysis.

I wonder what I can do to speed up this shedding process - the fastest way with minimal pain and infection? Can I induce the rebirth of new skin? I have friends who are doing this feet shed voluntarily - putting bags over their feet, then waiting until smooth skin appears. But this is my life, involuntarily. I probably won't use Milky Foot or a pumice like my mum did to smooth her feet in the 80s, or a power tool. I'll just wait, in intermittent pain.

The beauty industry saying we need smooth feet - with all sorts of products on the market to buff, polish, moisturise and preen them so we can confidently wear sandals. Just as well I've mastered the art of pretty dresses, stockings, cute bunny socks and enclosed shoes, then! Fashion makes me happy when I feel like an angry dinosaur bursting out of its skin.

This post is for Ichthyosis awareness month. I realise it's way more information about the medical side of things than I usually share. For more about Ichthyosis, click here.

27 May 2016

Ichthyosis Awareness Month: Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.

My friend Karin from Holland writes for Ichthyosis Awareness Month today. Karin runs Vereniging voor Ichthyosis Netwerken - the Dutch Association for Ichthyosis Networks.

She's doing an amazing job to bring together people with Netherton's Syndrome (the type of Ichthyosis I have) in her country. I love the idea of a support group being run by people actually affected by the condition. And she also told me how the group, plus doctors, are focused on both the physical and emotional aspects of Ichthyosis. So important.

Meet Karin.

Karin from Vereniging voor Ichthyosis Netwerken

"Carly Findlay invited me to write a guest blog about my living with, and work for Ichthyosis.

My name is Karin Veldman, I live with my husband and two cats in Assen in Holland. I am not working anymore, but I spend some time raising ichthyosis awareness. I love knitting, and singing in a choir. I did a study in applying singing bowls for massage. I used to work in a hospital for a mental health.

I have Netherton Syndrome. I had my diagnosis at 39. Before that, I knew I had some kind of ichthyosis, but I didn’t know what form it was. I was born with the condition and I have spend a lot of time visiting doctors. One of them told me to expose myself in a museum, when I asked him if it could be Netherton Syndrome. This still makes me cry. In my younger days, I was bullied a lot, because I looked different. This is leaving scars on and under my skin. Sometimes the memories come back as if it is happening in the moment, called PTSD.

This is Lisette and Nicky.

In Holland, all people with Netherton Syndrome know each other. We were brought togetter in 2009 help a little girl, fighting for her health. Our first meeting was so special, so much emotions were shared. We heard other people tell our story…amazing. We are still meeting each other. In 2013 I wrote the website , also available in English.

Suzanne Pasmans, Dermatologist, immunologist and Professor of Paediatric Dermatology in the Erasmus Medical Center in Rotterdam is leading lady of the Netherton Expertise Center in Holland. Suzanne is pictured below.

Dr Suzanne Pasmans

This Center is doing research on the syndrome. There is a lot going on at the moment. They want to know more about our immune system. They want to know what the protein LEKTI means to our body. Where should it be working? What is missing? We all had to go to a medical photographer. Blood samples were taken. We all visited a psychologist, to talk about our experiences with the syndrome. The Netherton Expertise Team is a multi disciplinary team, they do very good work. They are working hard to raise awareness for European Expertise on Netherton Syndrome.

In December 2015 we started the Dutch patients association Vereniging voor Ichthyosis Netwerken. Now, five months later, we are proud to announce we have almost seventy members. And we are groing bigger. I strongly believe in that. My other board members voted me for president, so now I am the leading lady of this association. But we cannot do without our members. I am so aware of the importance of us doing this, it brings togetter so many people sharing the same experience. We lately had our first Meet and Greet. It was so great to meet everybody. There were a lot of stories, a lot of emotions. Our medical advisors were under the impression of what was shared. They think health care for people with Ichthyosis needs to improve!

Our goals as an association are to raise ichthyosis awareness. We want to know all about other peoples stories. We want to organise meetings, live and online. We have started a facebookgroop Vereniging voor Ichthyosis Netwerken. There is also our website. Our first Meet and Greet learned us about the importance of this. People with Ichthyosis need our support, they need medical support. Everybody deserves a good chance.

On this picture you see, from left to right, Eline (who has netherton syndrome), Eline's mother Anita and me.

Vereniging voor Ichthyosis Netwerken - Eline, Anita, Karin

On this picture you see me and my little friend Savio, and his daddy. My friend Eline was helping at the meet and Greet. She is standing at the door.

Vereniging voor Ichthyosis Netwerken - Savio, Karin

Another goal is to raise a big International Netherton Network, with our association as a solid base. We invite you, to become an international member of Vereniging voor Ichthyosis Netwerken. Togetter, we can make some difference!

This is our handmade mascotte VIN."

Vereniging voor Ichthyosis Netwerken - handmade mascot Vin

Carly, thank you for giving me a chance to write on your blog. Kind regards from Holland."

Find out more about the Dutch Patients Association on their Dutch website, their Engilsh website, the Netheton's Syndrome website, and join the Vereniging voor Ichthyosis Netwerken Facebook group.

This post is for Ichthyosis Awareness Month. Read more about Ichthyosis here.

 

 

 

 

 

 

 

26 May 2016

How to cope with the emotional aspects of Ichthyosis – suggested by people living with the condition.

One thing I can’t seem to find is a resource offering advice on how to cope emotionally while living with Ichthyosis. There is a lot of fundraising money for research and a big focus on raising awareness, which is GREAT, but it's hard to find any tangible ideas for children, young adults and adults to manage their condition beyond the physical. There is a lot of VITAL information about how to maintain the skin and other parts of the body, but maintaining mental health is just as important. The social reactions we receive and emotional impact of living with Ichthyosis can be wearing. This is one reason we need to move past raising awareness – to support the people actually affected. To equip us with skills to take us through our lives.

Last year at the inaugural Australian Ichthyosis Meet, the attendees workshopped some great coping strategies. Most of the suggestions were initiated by children with Ichthyosis. This is SO good – I love that this young generation can provide peer support to others living with the condition – children and adults of all ages, and with a range of conditions, and parents too. A lot of this is pretty useful life advice, whether you have Ichthyosis or not.

It makes me smile to reflect on what a fun time the attendees had – and that children and adults were equal contributors. This is the utmost demonstration of leadership.

Here is their advice - verbatim and gorgeous:

How do I respond to comments and stares?

  • When people stare, I just keep walking, but if someone asks if I’m sunburnt, I just tell them I have a skin condition.
  • I smile at the person and tell them I have skin conditions and end the conversation
  • I say "No see I was born with this skin disorder called Ichthyosis". Also I ignore these stares. Sometimes the best thing to do is just keep going and ignore it.
  • Educate people about the condition
  • Raise awareness
  • By being approachable – eg – tell kids when they ask us, correct people if they assume it’s sunburn
  • Say "there’s nothing wrong with me, what’s wrong with you?"
  • Try brief explanation and walk away
  • Use a business card with information about my condition on it
  • Ignore it
  • I think "I am better than them because I don’t stare and make comments about people".
  • Ignore
  • Walk away
  • Tell a teacher
  • Be nice
  • Invite the child to play
  • Be strong and stand up tall
  • Be proud
  • Just say hello
  • Smile
  • Remember that sometimes people forget their manners, think before they talk and haven’t forgotten to interact properly.
  • Have a happy list
  • Laugh
  • Dance
  • Have fun – jump on a trampoline and play with friends
  • Being unique
  • Have mummy cuddles
  • Playing with pets
  • Funny jokes
  • Quiet time with myself
  • Go to events like the Australian Ichthyosis Meet – make new friends
  • Watch favourite shows
  • Play video games
  • Swim
  • Appreciate a nice teacher
  • Be brave
  • Have pillow fights
  • Do arts and crafts
  • Doing thing I’m good at like netball and dancing

How can I feel good about myself when things get me down?

  • Have a laugh
  • Exercise
  • Guide of concern
  • Think about what I can influence?
  • Gym and friends
  • Gardening and cleaning
  • Being a social butterfly
  • Go shopping and buy really expensive things
  • Get on the phone and vent and vent and vent to my best friend
  • Sleep
  • Laughter
  • Going out with friends and having a good night out
  • Being around people who you know will listen and support you.
  • When I’m upset I go for a scooter ride or motorcross
  • Wash my hair – because I love my hair
  • Being positive
  • Reflect on how far we’ve come
  • Being able to communicate with people who understand
  • Knowing you’re not alone
  • Look on the bright side
  • Eat chocolate
  • Go outside and play
  • Soccer
  • Read a book
  • Coffee with friends
  • Quiet time
  • Travel to tropical places
  • Watch movies in bed
  • Watch soccer
  • Draw
  • Take time for yourself
  • Give yourself unconditional love
  • Talk to friends and family
  • Facebook – sharing and understanding
  • Know that I am not alone
  • Spending quality time with the kids – kicking the footy or playing cricket
  • Do things I enjoy
  • Look at photos of my kids
  • Play with a friend

It’s also so important to have access to a counsellor or psychologist in addition to your/your child’s dermatologist – to support the person affected by Ichthyosis and also the people caring for them. Changing Faces and YP Face It are also great resources for supporting the emotional impacts of appearance diversity.

Have you got any ideas to cope with the emotional aspects of Ichthyosis?

 

 

23 May 2016

Choosing clothes to accommodate ichthyosis.

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.

Sam

"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!"

Katie

"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."

Nelly

"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."

Christine

"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."

Michelle

"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."

Gina

"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."

Cheryle

"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 ."

Bailey

"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!"

Jeffrey

"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)."

Abby

"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!"

Mary

"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!"

 

Kelly

"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."

Becky

"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."

Mark

"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."

Maria

"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."

Catherine

"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."

Nicole

"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."

Nicolle

"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!!"

Sarah

"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."

Lucy

"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."

Betty Ann

"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."

Thank you to everyone who contributed. You can read more posts about ichthyosis here.

 

 

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