Telling my story of what it's like to live with Ichthyosis and a visible difference. Loving life!
On Friday, I stepped out of work to do a speech at pretty exciting event. You can read about that on my Facebook. About 15 minutes before I left for the event, my tooth broke. I wasn't eating anything. It just broke after I poked it with my tongue. It was about a quarter of a tooth, the furtherest back on the right hand side of my mouth. I pride myself on my teeth, so I was pretty scared of what this breakage meant for the rest of my teeth. WERE THEY SO BRITTLE THEY WOULD ALL FALL OUT?!
After the speech, I made a booking for the dentist on Saturday. I was terrified. Terrified of the pain and the cost.
I haven't been to the dentist in years. How bad would my teeth be?, I feared.
When I lived in Albury, I went to one regularly. At school, I went to the free dental van - it was cold, and the toothpaste was grainy and not at all minty. Even when I was a young adult, I got student rates. And then I moved to Melbourne and made my dental health a low priority because of the cost. Going to the dentist is so expensive. While I get free hospital appointments, my creams and tablets are quite a signtifcant cost (particularly when I was on a lower wage/living alone), and dental appointments just seemed like another financial burden. So I put it off until a broken tooth forced me to go.
My parents always encouraged me to look after my teeth. I think I was about ten when my Dad stopped brushing my teeth - you might call that helicopter parenting, but I call that an investment in a child's teeth. My Dad, especially, was so strict with my teeth that I saw getting fillings as a failure. (I've only had one.) So I have kept to Dad's brushing regime - twice a day - though just with a regular toothbrush, and I never floss.
On Saturday morning, I headed to the dentist with trepidation. When I arrived, I filled in a new patient form, and because I indicated I was anxious about seeing the dentist, I was asked to complete another form, which was a survey about my level of anxiety. I was very scared about the needle and cost, and not so scared about anything else. The fact they were concerned about a patient's anxiety put me at ease immediately.
The dental surgery was lovely. The chairs were luxuriously soft. And Toy Story was playing on the TV screen to distract patients. The room was cleared of latex for me. And the dentist and I had a great chat. He cleaned my teeth and I had an X-ray.
It's my wisdom tooth that broke. It's not worth repairing because wisdom teeth are not necessary. So it's likely I will need them out soon. Before that, I need to see the dermatologist to discuss how this process might hurt my skin. A few friends have given me some advice - the biggest worry will be cracks in the corners of my mouth.
Surprisingly:
1. The dentist was less painful than expected.
2. It cost much less than expected.
3. My teeth are in very good condition. Other than the broken tooth, there were no cavities.
They're super clean and polished now. So white. And I went out and bought an electric toothbrush and floss.
I was so relieved about this appointment. I'd built up the fear, but it really wasn't too bad. I got this. I can do this wisdom teeth thing. Adam will need to hold my hand though.
Have you got a fear of the dentist? Did you overcome it? What did you watch on the dentist's TV?
I'm a pretty private person when it comes to the actual maintenance of my skin. Not many see me washing my face or the scattering of skin flakes that cover every surface I touch. You might have noticed from photos that my scalp gets flaky, and my hair is pretty short. I wrote about my wish for long hair here, if you're interested. Most days I have to comb the scale out, and it can be annoying, but it's just a part of what I need to do to stay comfortable. Recently I discovered a breakthrough and thought it's a nice thing to post here for Ichthyosis Awareness Month.
I'm not going to show you the intricacies of a scalp comb, obviously. This tip might work for scaly, itchy scalps affected by Ichthyosis and eczema:
I had a tube of Moo Goo eczema and psoriasis cream I wasn't using on my face or body (I tend not to use products that aren't paraffin or unprescribed on my face and body because often they leave me sore). While I was in the shower, I squeezed a generous amount of cream into my hands and massaged it into my scalp and through my hair. I have curly hair so it's quite dry. I didn't wash it out. A few hours later, I combed the scale out of my scalp with a hard, fine tooth comb. I left the cream in overnight. And I washed and conditioned my hair in morning.
My hair felt great (so soft and not oily at all) and my scalp was scale free. It stayed scale free for about four days - and I repeated the process again, just to be sure it worked.
Here's my scalp after using Moo Goo cream - a few flakes in my hair but no hard scale on my scalp. And there's very little build-up at the front of my head - there's usually a lot of scale. Look mum! No scales!
The cream is called 'New Eczema and Psoriasis Cream - With Marshmallow, Elderberry and More.'
Remember to see your doctor before trying anything new, and check the ingredients before using this product. You can buy Moo Goo online - it ships internationally.
This product has marshmallow root extract - the website states: "the extracts could also help remove dead skin tissue", which is probably the reason my scalp looks and feels so good! I think it also contains nuts so if you or your child have got an allergy, steer clear - but Moo Goo does a nut-free cream too.
Please note - everyone's symptoms and appearance of Ichthyosis are different - even with the same diagnosis. This means, treatment results vary. What works on me might not work on you or your child.
Good luck!
This month is Ichthyoysis Awareness Month. To read other posts in the series, click here. For more information on the condition, click here.
This post is not sponsored in any way. I'm getting no kickbacks, I buy the products myself.
Styling our wedding was such such a highlight. I started planning how the wedding would look pretty much the day after Adam put a ring on it. I had bought so many bridal magazines, and knew exactly what I wanted. As a blogger, I guess my profile was on my mind - how would it look on social media? That's silly hey?! In the weeks leading up to the wedding, things got pretty stressful. And I heard Meg Keene - a wedding blogger - talk to Aleisha on Save the Date podcast say "pretty is not an emotion".
The penny dropped. Focus on our promises to each other and working on a good relationship for the rest of our lives, and forget a Pinterest wedding.
It wasn't like I'd spent a lot on the styling, but I had given it a lot of thought. And after hearing that interview, I relaxed a little. What mattered is Adam and my love for each other, and that our friends and family had a great time. And they had fun. And to top off the emotions, the day DID look pretty - it really did.
I'm not great at graphic design, but I love doing events (that was my job for a long time) and I love styling clothes, so styling the wedding was an extension of that. It was really good to work with Camille - who is such a great designer and crafter. She gave a lot of her time for the wedding - I'm so thankful.
(Picture by Fresh Photography)
Just before I went overseas in 2014, I caught up with a friend in Yarraville. We strolled through boutiques and I spotted an amazing jacket. (It was Marita's, which shut down the week after my wedding.) I was frantically saving for travel and didn't think I could afford it (I think it was over $150 on sale) and my friend generously went halves with me. I never thought I'd be wearing it on my wedding day when I bought it. When I bought my wedding dress, I immediately knew I'd like to wear this jacket with the dress. (The jacket is by a UK label called Darling, it's no longer for sale in store, but there are a few on EBay. The print also came in green and coral, and there was a dress and a skirt in both colour sets which I wish I'd bought.
I was also influenced by the pinks, cornflower blues and purples at the Tuileries in Paris - the colours were quite similar to the jacket.
When it came to doing the Save the Dates, Camille and I decided to take a photo of the beautiful jacket print and use it as a feature. We decided all stationery would have this print.
The menus, table names and listing was also in this floral print.
(Picture by Camille)
The whole wedding was themed around THAT jacket. Even the clothes.
(Picture by Fresh Photography)
Quite tricky when it came to matching the bridesmaids dresses to the colours in the jacket. It was very lucky one of my bridesmaids is patient and loves fabric shopping. After the three of us visited 17 fabric shops, Camille found the perfect shantung silk in carnation pink and royal blue.
(Picture by Fresh Photography)
When I returned from photos and had drinks, I was wearing that jacket, and lots of people recognised it from the invitation.
(Picture by Camille)
I didn't want real flowers near me on the day as I really do get itchy and sneezy. And I like the thought of a bouquet that can be displayed forever. My bouquet was a mixture of silk flowers, buttons and brooches, and my bridesmaids' bouquets were white flowers with crystals scattered through. They were made by Nic's Button Buds - Nicole and her team were so lovely to work with!
I sent off my wedding invitation to Nicole in November, for the purpose of showing her the colour scheme, and the bouquets came back in February in the exact colours I wanted. It's so pretty to look at.
(Picture by Fresh Photography)
A friend asked what is in the little pink purse? It's a great #Ichthyosis hack - it's filled with a lip-balm sized tub of Vaseline and some tissues. Camille tied it to the bouquet with the ribbon from one of those horseshoe trinkets - made for easy access. This is the wedding version of reasonable adjustment. Perfect!
Even our gorgeous cake - made by Jason - carried the floral theme.
(Picture by Fresh Photography)
The flowers were styled by Pip Lincolne - again in pinks, blues reds and purples. I have been to a few blogging events she has styled so beautifully, and I immediately knew what I wanted - lots of flowers in lots of different shaped and sized bottles and jars. (So I collected glass vessels for about 18 months!)
(Picture by Fresh Photography)
The room was amazing - just how I planned.
Thank you to everyone who helped us style our wedding day. It looked beautiful. The little details were amazing. And more importantly, I stopped to remember pretty is not an emotion when it comes to styling. But "pretty" was present in our emotions - Adam and my happiness and beauty shone.
Content warning: this post contains screen shots featuring hate speech about Ichthyosis, and examples of ableist media representation of the condition.
Sometimes I torture myself by searching for Ichthyosis on Twitter. I want to know what people are saying about the skin condition that I have. I also don’t want to know.
The Ichthyosis Twitter stream goes like this: a few tweets from Ichthyosis support charities, some people say it’s an interesting condition (like we’re here for other’s entertainment!) and link to medical journals, there are usually tabloid news stories about people with the condition, and there are a few bloggers like me adding to the conversation.
But the majority of tweets about Ichthyosis make me despair. Lots of people tweet pictures of babies with the condition, reacting like the photos are a horror film. Many discourage the searching of Ichthyosis - especially Harlequin Ichthyosis.
Last month I did a quick Twitter search and came across a tweet responding to an article The Independent newspaper created.
I scrolled up to The Independent's tweet. They’d linked to their newspaper article titled ‘9 things you should never ever search on Google according to Reddit’. (Well, referring to Reddit as a reliable source says it all, really. You know my thoughts on Reddit. Don't even search for Ichthyosis on Reddit if you've got an ounce of empathy and decency.)
The things the article suggested you don't google included: Google (duh), your medical symptoms, your favourite food (spoiler: you'll get hungry. Big deal.) and your email address. Also on the list - Harlequin Ichthyosis.
"8. Harlequin ichthyosis
It's a severe genetic disease in which, at birth, a child's skin is encased in thick white plates of skin, separated by deep cracks.
This has many complications - because there are cracks in the skin the newborns are more susceptible to infection and constant care is required to protect and moisturise the skin.
The disease used to be considered fatal, but in 2011 theArchives of Dermatology concluded:
Harlequin ichthyosis should be regarded as a severe chronic disease that is not invariably fatal. With improved neonatal care and probably the early introduction of oral retinoids, the number of survivors is increasing."
While the content is factual, isn't derogatory and doesn't even suggest the appearance of Ichthyosis is grotesque, that it's included in this list says it all.
While someone told me The Independent is not a major paper, it describes itself as "Independent, international and intelligent news coverage, from breaking stories to agenda-setting campaigns and comment.". A quick scroll through shows me it’s no Daily Mail. There is the occasional click bait story, but its front page featured stories on UK and international politics, poor work conditions, terrorism, culture and lifestyle. It seems to have some brain.
Its online readership isn't huge, but it's in the thousands per month (about the same as my blog actually!).
This article was shared on Facebook 322 times, and received over 900 likes, and 16 retweets and 12 favourites on Twitter. In the scheme of things, those numbers aren't huge. But the media has an influence, and hundreds of people have read the article.
The Independent also has a code of conduct - this part is most relevant:
"Offensiveness
We do not set out to offend the general reader or viewer and you should always consider how people will respond to our material. That is not to say that we should necessarily shy away from publication simply for fear that it might provoke a negative reaction in some quarters. Insofar as broadcast material is concerned, the Ofcom Code makes clear that: "generally accepted standards must be applied to the contents of TV…services so as to provide protection for members of the public from…harmful or offensive material." It goes on: "Broadcasters must ensure that material which may cause offence is justified by context."
Perhaps it's a personal bias, but I strongly feel this article breached that code of conduct.
When the media creates fear around something – like we’ve seen with of the media’s hype around Islam, society doesn't actually stop to get to know these people who are marginalised and vilified.
The Independent has created fear around a medical condition, a visibly different appearance. This is bullying. Fear mongering. Hate speech. This is where it starts - the mainstream media, and of course, social media.
People’s impressions of disability come from the media – dangerous, tragedy, victims, pitiful, heroes, inspiration porn, overcoming. Sometimes I think the media representation of disability impacts society more than meeting actually disabled people in real life. They're seen shows like Embarrassing Bodies and Body Bizarre - which create awareness, but in a voyeuristic, sensationalist way - and think they've been fully educated. Next!
And this is why the disability community is constantly calling for better media representation of disability. Alice Wong writes:
"When you have non-disabled people pitching, writing and editing stories about disabled, you’re missing the lived experience that’s intimately tied to accurate depictions of disability. And it’s more than a matter of hiring more disabled people in media–there’s also a need for a culture shift to examine how ableism is entrenched in the media.
Poor media representation is why people are scared by visible difference and disability - because we are presented as grotesque. This is why people feel shameful about their appearance. This is why there’s such a stigma around looking different and having a disability. No one wants to own it, because we’re warned against googling it.
I wrote about someone being scared by my face last week. Articles like The Independent's exacerbate that fear. People are discouraged from googling Ichthyosis, so it must be grotesque, right.
A couple of weeks ago, I got thinking about why I post photos of myself and share my story. The fundamental reason hasn’t really changed since I first wrote about this. Control. Control of how my story is portrayed, control of how Ichthyosis is portrayed.
I am an online writer, focusing on Ichthyosis and what it’s like to look different so I can contribute to changing the media landscape around Ichthyosis and other visible differences. I hope to show the world that people with Ichthyosis like food, fashion, can write and think critically, have meaningful and loving relationships, endure ableism and discrimination. There are many, many others doing this through blogging and socials media too – Courtney and Brenna, DeDe and Evan, Mui, Fiqasani, Maria, Hunter, Brianna, Steph, Lucy, Gina, and many many more.
When people search for Ichthyosis online, they see the condition as medicalised, the portrayal of Ichthyosis as a horror story. They don't see our full lives, our smiles and the way we are affected by ableism and medical challenges. But we collectively have the power to change that.
Everytime I post a photo of me, or write a blog, it has the potential to be misused (it's happened before). But this content also has the opportunity to change the portrayal, contributing to the library of sensitive, non sensationalised, realistic stories about Ichthyosis.
I hashtag Ichthyosis on Instagram so people can see me leading a full, happy, loved life. They see me as a bride, as a fashionista, gazing at my husband, seeing a band, eating at a restaurant, travelling. I hope they see beauty, energy and laughter. I talk about Ichthyosis on Twitter and Facebook, because it's a part of my life, a part of my identity. And I blog about Ichthyosis so that when people Google the condition - out of fear, to ridicule, to seek information, because of genuine curiosity - they won't be shocked.
When I saw that article from The Independent, I was shocked and saddened. It's a reminder that the fight never ends. As Edward Kennedy said, "There’s work to be done. The work goes on, the cause endures, the hope still lives and the dreams shall never die."
But writing this, and thinking of all the positive content created by people affected by Ichthyosis, I realise we really can help outweigh this negative portrayal of our conditions. Disability and facial difference is too often used as a target in the mainstream and social media. It's time consumers started paying more attention to the actually disabled instead of taking cues on how to react to our appearances from those who are just out to ridicule us.
I - a person with actual ichthyosis - direct you not to listen to the media. Google ichthyosis. You'll find some amazing, beautiful, smart, articulate and strong people.
I first met Ainsley and her husband in January 2015. Her little girl has Ichthyosis. We chatted for hours - exchanging anecdotes and advice. I finally met her beautiful daughter just before our wedding. Oh my the cuteness! The week before our wedding, Ainsley sent me a video of her daughter blowing me kisses for the big day - just beautiful.
Ainsley has written an eBook called True Blue Hand that you can download for free. It's a great resource to explain appearance diversity to children. The link is below.
Today, Ainsley has written a beautiful piece about kindness. I nodded when I read this line: "the approach of others is the biggest negative of having Ichthyosis."
Here's her story.
Rethinking Kindness by Ainsley Kyder-Gould
"The nurse ushers me to the chair to have the first of three needles to check if my gestational diabetes has calmed post pregnancy. As a first time mother, I proudly sit next to my precious and most beautiful new born daughter, who is content and sleeping soundly in her capsule under the blush pink muslin – that like so many other things we bought in excited anticipation of her arrival. I am so happy.
The nurse starts to chat with me as she is preparing the needles.
"May I take a peak?" the nurse asks referring to our little sleeping princess.
"Sure" I say with the tone of a proud first time mother.
I love that people love babies and I love that I am now a part of that world.
The nurse gently lifts the muslin, as to not wake her. Un-expectantly she recoils, dropping the muslin and stepping back. "What is wrong with her?" she exclaims in reaction.
"Nothing" I reply.
"But she is all red, is she sunburnt?!" the nurse quickly responds.
"She has a skin condition but there is nothing wrong with her" I say calmly.
"Oh, that is sad. Think of how she is going to be bullied at school, it’ll be horrible!" continues the nurse in a surprised tone, believing that her response was in some way sympathetic to me.
I kept calm because I confidently did not share her vision.
My reply to her was simple, "We choose not to see it that way".
I left the appointment deeply thoughtful and hurt by the apparent unkindness. However, this was the first of many incidences with adults and children alike. Fuelled by the distress of the world my daughter would grow-up in, it opened up many questions that occupied my mind for several months. There clearly was a disconnect in how I saw my daughter, who just happened to have a rare skin condition, and how other people saw her, our situation, and how they responded.
Why do people respond in this way? Have I also, through some misguided belief ever responded in the wrong way? The truth was yes. While I have never been as tactless and would consider myself a kind person, I had to admit that prior to my own personal experience with my daughter I would approach these delicate situations behind a polite façade. Really what I was thinking was "you poor thing" and my heart would break for them.
This self-reflection led to better questions; why don’t people know how to deal with appearance diversity? Why do we wait until we arrive in these situations to only struggle through them? We often offer some form of pity and seriousness like it is relevant or even appropriate. Knowing now, as a mother of a perfectly unique and most beautiful child who just happens to have Ichthyosis, the approach of others is the biggest negative of having Ichthyosis.
The truth is, without Ichthyosis we wouldn’t have our little girl. It’s not who she is but it is a piece of her. So naturally we choose to embrace Ichthyosis. We must take the road less travelled and most people who have some form of uniqueness do too. Although we wouldn’t have chosen it for our daughter – many good things come from a crisis. We can often think "I would never do that…" but until I truly reflected only then did realise I honestly didn’t have the right mindset. I now approach any kind of uniqueness with a smile and an open mind, focussing wholly on the person not the diversity.
Meeting or interacting with someone with diversity of appearance may be a one or two time experience for you or your child but for that person it is every day that they are dealing with the unkindness. I think it is fair to expect we can all live our lives focussed on who we are and not what we look like, and with this in mind we may all benefit from a little preparation to ensure we put our best foot forward.
I can never fix my daughter's condition, but I believe I can change how the world deals with diversity of appearance. This was my impetus to create True Blue Hand. True Blue Hand is the tale of a little girl name True who happened to be born with a blue hand. The book is an excellent way to begin dialogues with your children about how to approach people with uniqueness in a curiously kind way. The book is available for free download from www.truebluehand.com and we have started a kickstarter campaign that you can contribute towards to raise funds so that we can print and give away copies of the book to schools, libraries and hospitals in the community. Follow True Blue Hand on Facebook to get updates.
Read more Ichthyosis Awareness Month posts here.
A few weeks before the wedding, I realised I wanted a videographer. Friends suggested I ask a blogger who enjoys making videos, and I did! I put a call out in a bloggers group, saying I haven't got a huge budget but willing to pay, and promote them on my blog and socials. I added that it could also be a great opportunity for them to develop skills.
The amazing Clare Reilly from The Life of Clare Blog nominated herself, showing me some of the little videos she's taken recently. I loved them and she's a great friend so I gave her the opportunity! Initially she wanted to do the videography as a gift and I thanked her but insisted we pay her. She refused. Eventually I (and her husband) convinced her to take up Adam and my offer of paying for her to stay in a lovely Air BNB for the night.
I'm so glad Clare offered to film our wedding. She did a great job, and it was lovely having her there too. I think she learnt a lot from our professional photographers too.
Here's the beautiful Clare, camera in hand. Photo by Fresh Photography.
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Clare said:
"I was so happy to be involved. Up until Carly saying yes to my offer I had only ever filmed videos on my iPhone, so I wanted to get good quickly before filming the wedding.
The day was beautiful to be a part of but it was long and stressful (I wasn't too stressed!). I used my limited experience to try to get different shots throughout the day and was more interested in getting real candid moments instead of posed shots.
When it came to the editing I had a really hard time until we found the music policy section on YouTube. Then I was able to edit with confidence.
I learnt that I love making videos, I love sharing beautiful moments in that way."
I love the details in the video - they bring back wonderful memories. I have a few favourite moments - Mum putting my cream on (no one sees that, and it takes me back to childhood), my Dad seeing me for the first time, Adam coming down the aisle (I was waiting to see his grand arrival), us being silly, and all our friends dancing. The music Clare used featured in our ceremony and reception. Perfect.
Here it is!
I've watched it five times now, and I've cried each time! Thanks for doing a fabulous job, Clare!
And sorry this is the only photo of us - taken by Jarrod. I'm sure Clare has the selfie!
I strongly encourage you to ask people if they are interested in collaborating with you, and putting your hand up to do something, even if you've just dabbled in it. Asking Clare to do the video got me thinking about the shared economy - trading skills and talents fairly - but that's a blog for another time...
Follow Clare's blog, Facebook, Instagram, Twitter and YouTube.
Read more wedding posts here.
It's May and that means it's Ichthyosis Awareness Month. This isn't my usual chipper post. This is me being cynical.
From the Royal Children's Hospital website:
"Ichthyosis means 'fish scale' and is the name of a group of genetic skin diseases that cause dry, scaly, thickened skin. The condition is usually present at birth or in childhood. It is not caused by infection and is not contagious (i.e. it cannot be caught by others). The life span of someone with ichthyosis is normal. There is no known cure for ichthyosis, but there are treatments available which can help to improve the skin's condition.
Our skin has many important functions including physical protection, temperature regulation and providing a barrier to water and infection. Skin cells are the building blocks of skin and are made up of keratin.
In normal skin, new skin cells are formed in the deepest layer at the same time as dead cells are shed from the top layer of the skin. In ichthyosis, either the dead cells are shed too slowly, causing a build up of the top dry layer; or the production of new cells from the lower layers is too slow. The skin barrier is abnormal and allows too much water to be lost from the skin."
As well as the medical challenges, it's socially challenging because of other people's ignorance and fear about the condition. But you know all that. I've been banging on for it for almost six and a half years.
I'm not running Ichthyosis Awareness Month on my blog each day (twice a day) in May like I've done for the past three years. Cue sighs and protests, because I know how popular it's been. I've given the Ichthyosis Awareness Month blog project a lot of thought. And I simply can't do it in 2016 with all that has happened since last May. I'm still trying to get on top of my own Ichthyosis, which hasn't been great for more than a year now. And so I must rest.
One main reason is the sheer effort and time it takes. Editing, publishing and promoting others' stories is huge work, especially when many aren't natural writers . Last year I wrote a couple of my own posts, plus edited, published and promoted more than 40 posts from others affected by Ichthyosis (as a patient or a parent). I paid others to help edit some of the guest posts. And I tried to get as many people promoting the posts - which is tricky. Even people who submitted stories didn't promote them.That was on top of my day job, the early stages of wedding planning, organising the Australian Ichthyosis meet, and freelance writing. It broke me.
This year I am only running a couple of posts a week posts during May. There is one guest post coming that I know of, and I have a few topics lined up - more so opinion pieces than my personal story. It's such a relief not to be overwhelmed with a full calendar of guest posts. I do appreciate everyone who has submitted stories the past three years, but I can't manage a month's worth this year. I hope you understand. I'm happy to take a couple more guest posts - if you would like to submit a post, you can read the guidelines here, and I'll consider publishing it.
Here's the posts from the 2013, 2014 and 2015 Ichthyosis Awareness Month blog project. Please go back and read and share them - they empowered and educated so many. Thank you.
Another reason I'm not doing a full month of posts is because I strongly believe that we need to move past raising awareness. We need acceptance and inclusion. I know the rest of this post won't make me popular, but I back myself. I wrote a lot about the need to move past awareness last International Day of People with Disability. Me and others still experience exclusion, rudeness, stares and discrimination on a daily basis - despite awareness raising. We are expected to be teachable moments during every difficult encounter - even by people in the Ichthyosis community. I'm bloody tired.
Despite awareness raising, there's little acceptance. While I am proud I've helped to change perceptions of people with Ichthyosis (and other facial differences and disabilities), I'm also jaded. In recent months, I've received lots of messages from readers who have told me I've helped them in some way, but I still feel the message isn't reaching the people who need to hear it. I think a few others with Ichthyosis feel this way too.
Despite myself and hundreds of others raising awareness, there is still hate speech on Reddit, and stolen photos of people with Ichthyosis on Youtube and Facebook - dripping with ridicule and exploitation.
We still have to explain why we look like this, tell people we aren't contagious, and receive stares, comments and ridicule regularly. One friend, a parent of a little boy with Ichthyosis, experienced swarms of concerned people at an event asking why they let their child get so sunburnt, even calling the police. Another friend endured a nurse calling child protection because they thought she wasn't looking after her child properly. Both these friends continually raise awareness.
Raising awareness has meant parents share well meaning yet undignified photos and videos of their children with Ichthyosis. The content should be kept private. This past year I've seen some pretty horrific images and videos on Facebook including nudity, piles of skin and a screaming child in the bath. They've made me cry. This stuff belongs in the home, never to be photographed, and never on social media so others can say they've learnt something new.
I know it's with the best intentions, I know. But private groups of 700 people or more aren't private. And a public Facebook profile certainly isn't. I've been shouted down for speaking up for privacy and dignity. I wonder whether those adults without Ichthyosis doing the sharing would like their images shared in this way, in the name of awareness raising? It hurts.
Despite raising awareness, there are still uninformed, sensationalist news articles stating that Ichthyosis is caused by marriage between relatives.
Despite raising awareness, adults with Ichthyosis find it hard to get employment - because employers are scared of how their skin looks, and they underestimate abilities.
Even though those close to us are aware of our conditions, our skin can still be an inconvenience to them. They're not comfortable with our skin getting on the floor or on their clothes, and voice it. These criticisms sting, even when they're said about someone else.
Our stories are often told by others, sensationalist and exploitative as mentioned above. We need better inclusion in the media. We need inclusion across the board to prove our worth. The media culture need to stop making money from portraying our lives as tragedies.
And raising awareness can be an echo chamber. The majority of people raising awareness are those with the condition, or our family members. The shit that happens to us constantly makes us tired, and so sometimes, even we don't want to raise more awareness (I'm included in feeling like this!). I'm not sure if it's awareness fatigue, apathy or the inability to handle another issue that isn't ours, but even those with the condition don't speak up when members of the Ichthyosis community face injustice.
We need to move past raising awareness. People know we're here. We leave trails of skin like breadcrumbs. We need to get to acceptance - acceptance of our condition by others, and by ourselves.
This May, I hope for more than awareness raising and tokenism.
I hope individuals and companies take committed action to tangibly improve the lives of people with Ichthyosis.
I believe Ichthyosis charities especially need to focus on supporting the every day, rather than cures - such as offering advice about education support, helping with addressing online and offline bullying, and coaching for job seeking.
I hope more of us can meet in real life. The bonds formed are amazing.
I hope more parents can listen to adults with Ichthyosis and really respect and value our experience and advice (and so I'm thankful for the many who already do).
I hope the new generation of children with Ichthyosis learn to love themselves, speak out about their experiences, and not feel the need to conform to a beauty ideal. Above all, I hope the ableism myself and so many others have endured stops at us, and these beautiful kids never have to experience it - because society is more aware and accepting.
And on a personal note, I hope the pain of my Ichthyosis subsides a little so I don't spend so much time in bed.
Raising awareness about Ichthyosis is a start. But it's up to those without their condition to remove their prejudices and judgements about our appearence and medical needs so they can accept and include us. Over to you.
It's been so much fun writing about the wedding! I can't believe it's more than a month ago. This post is the topic that everyone is asking me about - the clothes! All pictures are by Fresh Photography unless stated.
I had such an extensive wedding wardrobe! Two dresses, three jackets, two pairs of shoes and two bras! It was lots of fun to have wardrobe changes, and also kept me comfortable.
Having two dresses was extravagant but practical. Plus my first dress was on an incredible sale, and my second dress was kindly gifted.
Dress one was more bride-y than I'd ever imagined I'd wear. I bought it in June 2014 from Fairytales Bridal Boutique - Mum actually picked it out. It had six skirt layers and half a metre of tulle was cut off as I'm so short. It was adjusted with a lace up panel at the back to accommodate my bust. My lovely dressmaker altered it - I think I spent more time standing in it for fittings than wearing it on the wedding day!
I loved it - I felt like a princess!
I wore some soft gold glitter peep toe wedges for the ceremony and some of the photos, but I soon removed them and replaced them with some comfier soft gold ballet flats. My dress length was just right for both pairs of shoes. I can wear my shoes again.
In the lead up to our wedding, I was really worried about how the boning in my very bride-y dress would affect my skin. I asked married girlfriends with Ichthyosis for advice on how they kept comfortable on their big day, and also asked my dressmaker friend to make a simple jersey band to wear underneath the bodice - to avoid the synthetic fabric hurting me. I was also lucky to be given a second wedding dress from St Frock to change into, should I need to.
(Picture by Camille)
I managed to stay comfortable in my traditional dress from 1.30 - 9.00 pm. And then I wanted to be able to sit comfortably, eat dessert and dance. Oh yeah, and go to the toilet on my own! And my forearms were getting a little sore from the lack of moisture. So I layered up (with a Metalicus 3/4 sleeve top that disappointingly ran on first wear), the sequinned maxi dress and a little coatlet plus a brooch in the wedding theme colours.
This dress was made for dancing! So swishy and comfortable.
Thanks St Frock!
It's important for me to cover up and as much as I'd loved to have bare arms, it wasn't possible. I get itchy, dry, cold and sore. Plus I wouldn't have bare arms in every day life. And so I covered up with jackets.
For the ceremony, I went traditional - my big white dress and a simple lace bolero that was handmade and given to by my friend Jackie who runs clothing label M'gapi. It was so soft and comfortable to wear - beautifully made to measure.
(Picture by Sandra)
During the official photos, I put on a coloured jacket which was lots of fun! That was by a UK brand called Darling (I bought it from a shop in Yarraville that's recently closed down), and while it's not on sale in store, I saw a couple on eBay.
I promise to write more about this jacket in a future post - it really was the feature of the wedding.
And I put a winter white coatlet on with my second dress (the coatlet was from a bridal store in the city that has now shut down), and pinned the collar with a brooch from Clay and Chic on Etsy. (There's a photo of the brooch below.)
My headpiece was handmade - I found an amazing artist at the Etsy bridal fair. Ashlee Lauren, from South Australia, created a lavish headpiece for me - it fit like an Aliceband. It was rose gold, silver and crystals.
The jewellery was simple - a pearl and cubic zirconia pendant on a silver chain (from Salera's), a pearl bracelet (from Royal Pearl and Gem in Royal Arcade Melbourne CBD) and my grandmother's engagement ring - which is a blue sapphire surrounded by diamonds. I put my engagement ring on my right hand. Now I have my wedding ring, I have been wearing it on my right hand and my engagement ring on my left (my hands have been too sore and swollen to wear them both on one finger right now).
Adam wore a dark blue suit - a suede-like jacket with brown elbow patches (from Peter Jackson), suit pants (from Connor), a white shirt (also from Connor) and a cornflower blue bow tie (from Peter Jackson). He accessorised with Yoda socks (I got them from an online comic store) and a Mickey Mouse Jedi pin I bought from Paris Disneyland.
Camille made dresses for her and Cassie - they were pink and blue shantung silk. I said they could wear whatever they felt comfortable in, as long as it was in the colour scheme. The dresses were so simple and pretty, and I hope they get lots of wear out of them again. Camille did such a great job! She even made matching bags. Their jewellery was their own.
Jason told me he wore a blue blazer, a shirt with red floral pattern, pink check tie and black stripe suit.
He had Blundstone boots, undies by Bonds, and a buttoniere by Nic's Button Buds.
My mum wore an amazing black and hot pink jacquard dress from Anthea Crawford. It went perfectly with the bridal party. I loved it so much!
Dad had a white shirt, striped tie and black pants on. He was adamant he wasn't going to wear a suit... Too restrictive to dance in I guess!
