Ten reasons I am thankful for having Ichthyosis.

I AM thankful for having Ichthyosis.

The incredible Stephanie (supermum - she's just given birth to her second baby!) has put together a list of reasons she's thankful for having Ichthyosis. I contributed too, so did Mui and Hunter. I can relate to what they're grateful for too.

We don't celebrate Thanksgiving here in Australia, but it's a tradition that I wish we'd adopt. Showing gratitude and spending time with those you love is so important. And that food - amazing. Pumpkin everything! Also, I can watch the Thanksgiving episode of Felicity over and over.

(Source)

 

Happy Thanksgiving!

To people without Ichthyosis, it might seem strange that we're thankful for having this often painful, visibly different and socially challenging condition. But there ARE reasons to be thankful. Many reasons. I'm not resentful. Inspired by Steph, here's my Thanksgiving list.

I am thankful for having Ichthyosis as it's given me perspective. Physical beauty is not the most important thing in life. A cold is not something to complain over.

I am thankful for having Ichthyosis as it's given me a reason to write and speak about my story and the importance of celebrating appearance diversity. I've written for publications I dreamed of since before studying journalism. And I've spoken for some noteworthy organisations. I've won awards (and declined one).

I am thankful for having Ichthyosis as it has allowed me to see the funny side of looking different and having a chronic illness. Here's my interview on 612 ABC Brisbane about visible differences. I talked about difficult situations but I could laugh at them with the interviewer. The other contributors and callers were so interesting and relatable. This is why we need the ABC.

I am thankful for having Ichthyosis as it means I don't have to worry about being 'normal'. What's normal anyway? A setting on the dryer. I'm happy with non conformity. (Also, read this post on A Mighty Girl for a great story about the expectation of normal.)

I am thankful for having Ichthyosis because it forces me to talk to others, to engage with strangers, and has given me confidence. While it can be tiring, it's no secret that Ichthyosis is a conversation starter.

I am thankful for having Ichthyosis as it's blessed me with an amazing community - and I feel so lucky to have these friends in my life. My friendships have gone from online to real life - and it was a delight to meet so many people with ichthyosis on my recent trip overseas.

I am thankful for having Ichthyosis as it's given me wrinkle free skin. I am almost 33 but still look 23!

I am thankful for having Ichthyosis because it has given me empathy. I am always amazed when I meet someone with a disability or chronic illness or even from another diverse dommunity and I can relate to their life.

I am grateful for having Ichthyosis because the people around me are amazing. My parents are the best I could ever wish for and my fiancé is the most beautiful man.

They've had to learn, to adjust and to cope. They're protective, compassionate and put up with all my hot and colds and itches and confetti skin.

I am thankful for having ichthyosis because it's made me resilient. I bounce forward. I'm positive.

What are you thankful for?

For more quirky things about my Ichthyosis, see the things I haven't (or now have) told you about my Ichthyosis.

 

 

 

 

 

 

Memories of donkey riding, mid 1980s

 

We did a lot of things outdoors when I was little. Running under the sprinkler, gardening, fishing for pippies, camping...and donkey riding. It's funny, because I really don't enjoy the outdoors and what it does for my skin, and I don't remember liking it when I was a kid either. I guess I didn't want to say anything to my parents in case I sounded like I was whining or didn't want to do the activities they'd planned.

 

Despite the heat, wind and flies in the outdoor environment, I think I always had fun.

 

I used to wear a net under my hat, to stop the flies from getting at my face. Flies and Ichthyosis is so difficult. But the net stuck to my face too, and smelt funny. Sometimes a fly would get caught in the net, buzzing about right at my face, around my ears.

 

We rode these donkeys in the mid 1980s. I remember how jerky it was, how high we were perched and how Mum wouldn't let me go. The paddock smelt of donkey manure and country air. We seemed to get through those hot, dry summers, packing things in, not complaining too much aboit the heat.

 

When I was a little older, we rode camels - smellier, jolter and taller than donkeys.

 

These photos make me smile. It's hard to believe they're almost 30 years old.

 

 

What's love got to do with it? I don't agree with Sarah Wilson's idea that self-hatred is making us sick.

I have a chronic illness and I love myself sick. Sarah Wilson believes self-hatred is making us sick.

Sarah Wilson describes herself as a "blogger, author and wellness coach". She is perhaps best known for her editorship at Cosmopolitan Magazine, host of season one of Masterchef Australia and I Quit Sugar evangelism (oh they all seem like a contradiction don't they?!).

Note that I didn't list qualified nutritionist or medical practitioner in there? Because she's not.

She wrote a news story titled 'Is self-hatred making us sick?'

She writes:

"When I’m asked, as I often am, "What caused your disease?" I have to be frank and say – once all angles are ironed out – everything points to … anxiety. Or as I like to put it, a profound, visceral, itchy dis-ease with myself."

This story was an extension of a blog post titled 'could female self-hatred be the real cause of autoimmune disease?'

She's quoted Dr. Habib Sadeghi, who she describes as "an American 'healer to the stars'". Dr Sadeghi believes self-hatred is the real cause of chronic disease in women

From Dr Sadeghi's Ted Talk, Sarah deducts:

"Self-hatred causes autoimmiune disease, which, boiled down, is the body attacking itself"

Furthermore:

"* So how to heal? With self-love. I rarely know what this means and it mostly seems a bit "motherhoody" to me. But I can see how key it is. You can do all the tests, elimination diets and treatments you like, but, boil it all down, there’s always a sneaking feeling that it’s more than the gluten or the toxin or the hereditary predisposition. Right?

Sometimes I sit and really feel what’s behind a flare up. The only feeling there, behind the pain and shitiness, is a cringy, self-flagellating, forward-lunging anxiety. It’s always there, whatever the flare. The same feeling"

I have a chronic illness and I love myself a lot. I look in the mirror and see a beautiful smile, and I'm proud of my accomplishments. The cause of my chronic illness cause is genetic, not due to self hatred.

Sarah, I was born with Ichthyosis due to a gene mutation. Ichthyosis affects my skin and also my eyes, ears, temperature control, metabolism and immune system.

While I am happy, I also know a lot of people with Ichthyosis who aren't happy with themselves and haven't accepted the condition they were born with. This hasn't caused or worsened the condition. And many parents blame themselves for passing the condition on to their child. Another source of blame is the last thing they need. 

The National Institute of Arthritis and Musculoskeletal and Skin Diseases explains the genetic cause of Ichthyosis:

"The inherited forms of ichthyosis are caused by mutations in genes passed from one or both parents to a child. In some cases, the parents themselves do not have the condition, but carry the genetic mutations."

My form of ichthyosis - Netherton's syndrome - was caused by the Spink 5 gene:

"Netherton syndrome is caused by mutations in the SPINK5 gene. This gene provides instructions for making a protein called LEKT1. LEKT1 is a type of serine peptidase inhibitor. Serine peptidase inhibitors control the activity of enzymes called serine peptidases, which break down other proteins. LEKT1 is found in the skin and in the thymus, which is a gland located behind the breastbone that plays an important role in the immune system by producing white blood cells called lymphocytes. LEKT1 controls the activity of certain serine peptidases in the outer layer of skin (the epidermis), especially the tough outer surface known as the stratum corneum, which provides a sturdy barrier between the body and its environment. Serine peptidase enzymes are involved in normal skin shedding by helping to break the connections between cells of the stratum corneum. LEKT1 is also involved in normal hair growth, the development of lymphocytes in the thymus, and the control of peptidases that trigger immune system function.

Mutations in the SPINK5 gene result in a LEKT1 protein that is unable to control serine peptidase activity. The lack of LEKT1 function allows the serine peptidases to be abnormally active and break down too many proteins in the stratum corneum. As a result, too much skin shedding takes place, and the stratum corneum is too thin and breaks down easily, resulting in the skin abnormalities that occur in Netherton syndrome. Loss of LEKT1 function also results in abnormal hair growth and immune dysfunction that leads to allergies, asthma, and eczema."

There is currently no cure for Ichthyosis, but I can't tell you the amount of times people have offered me Noni juice, magic pills, prayers, happiness retreats, and advice about elimination diets to cure me.

This year has been the best year of my life. Travel, meaningful day job, an engagement and awards, and I've loved myself sick. I've got so much love around me. But it's also been the sorest. I can't tell you how sore I am, even now. Days missed at the gym. Hard to get up in the morning. Bloody, painful legs. No amount of happiness will make me feel better physically. It's up to my body to heal itself.

I've never told myself I'm ugly or no good or self harmed. And even if I was self loathing it would not change my Ichthyosis.

I take pride in my appearance, further myself in my career and education, surround myself with amazing people and reach for the stars. And guess what? My face is still red.

I believe in the power of positive thinking but I'm a realist. I believe in the power of positivity in addition to a good medical team and plan, and a realistic perspective.

And a chronic illness like mine means there will be times I am down. That I wish this wasn't my lot in life. I don't want to be stared at like a freakshow. I don't want to be in pain. And that level of 'negativity' is perfectly normal for people living with chronic illnesses.

I don't want to be told by someone with NO medical qualifications what's caused my genetic, rare chronic illness. What's love got to do with it?

Ichthyosis wasn't caused by a lack of love. My parents love each other very much - they moved countries to marry.

Ichthyosis was not caused by Jesus or sin. (The burden that muse be on religious believers thinking they've sinned to cause illness must be unbearable.)

Ichthyosis was not caused by diet or environment. (Of course what I eat helps me to manage my skin better. But removing a whole food group will not cure it. The same goes for the environment - shady, low allergy areas are best for my skin.)

Neither can Ichthyosis be cured by love, faith, food or positive thinking. I can change my lifestyle but I will still have Ichthyosis. I will still have red, scaly, painful skin.

My friend Camille has an autoimmune condition called Hypogammaglobulinemia - also called CVID. She was on the lung transplant list for 18 months. I never heard her utter a word of self hatred. It took a transplant to save her life, not a positive attitude. When I read Sarah's attitude towards chronic illness I feel for people like Camille.

Sarah has a dangerous message to be spreading, especially to a large and maybe vulnerable following. She's dismissing those with serious illnesses, shaming them into thinking their attitude is not positive enough to make them well. This evangelical movement that Sarah has started is worrying. It's medically unsubstantiated and belittling to medically diagnosed conditions.

Her writing about self-hatred is victim blaming. It reeks of harden the fuck up. And the chronically ill don't need this attitude. We need compassion and understanding and the permission to manage our conditions our way.

If you're desperate in finding answers and treatment for your chronic illness, please go see a doctor.

(Postscript - while I am a health blogger, providing information, advice and support to the ichthyosis community, I've never made unsubtantinated claims. My story is based on my personal experience and I acknowledge that everyone manages the condition differently. I am not a doctor or counsellor and always encourage blog readers to seek professional, qualified help for their conditions.)

 

 

 

 

 

 

 

 

 

Ichthyosis Awareness: Questions, whispers and stares. A guest post by Bailey.

As a blogger, I'm constantly aware of the privilege of being able to broadcast my opinion, and also that not everyone will agree with my opinion. So when I wrote a blog post on the intrusion of peoples' curiosity, I got a few comments disagreeing with my opinion and the way I view questions and comments about my skin.

So I invited an alternative opinion to be published on my blog. You might remember Bailey from Ichthyosos Awareness Month in 2013 and 2014. She's written a guest post today. While I don't entirely agree that it's our role to educate everyone we meet, I do agree that our reactions to these questions and comments shapes others reactions to our skin. And I'm always interested in a contrary opinion if it's well considered. It's a reminder that we all experience Ichthyosis differently.

Here's Bailey.

""What is wrong with her?" "Were you burned?" "Why is her skin like that?" "Spent too much time in the sun?" Whispers. Stares. Double takes.

For those of us living with ichthyosis, this is all a part of our daily lives. It doesn’t matter where we go, we are bombarded with it. We never truly get a break away from it all. I used to hate it. I used to feel like people were rude to even ask. I used to be rude back and give them the cold shoulder. I used to think they had no right to point out my physical difference or ask about it.

Then, over time I changed. No, my skin didn’t change. I still have this outward physical difference that is impossible to overlook, but my attitude changed. Maybe it started changing years ago when I saw my first black person (I grew up in a small town where there were not people of other races) or maybe when I finally met someone else with ichthyosis. Maybe it was when my Mom began to realize that her rudeness toward these people was negatively affecting me and causing me to be more insecure in my appearance. Whenever it was, I began to take a different approach. After all, if I did not have ichthyosis wouldn’t I catch myself doing a double take when I saw it? It wouldn’t be on purpose. It is just a natural human instinct. We are made to be curious, to be full of wonder, to want to know why something is the way it is. Think of children. They are constantly asking questions. "Why is the sky blue?" "Why do we do that?" "What is that called?" "Why? Why?

Why?" It drives parents crazy. Adults tend to suppress a child’s sense of curiosity and as we get older we begin to question less, but that doesn’t mean we don’t still have those questions going through our head. So yes, people are going to wonder why my skin is dry…or red…or flaky…or scaly. I have learned to be open with my ichthyosis and to encourage people to ask about it. I bet you’re wondering "why?" Well, to me it is important to make more people aware about ichthyosis and how can I do that if I ignore the questions and don’t answer them?

We need to be advocates for our differences and share about it every chance we get. That might be on a national TV show or in an international blog, but nine times out of ten it happens in everyday life with the people we meet on the street. We need to allow people to ask their questions. Are some people rude? Absolutely, but I have also realized that sometimes people aren’t genuinely rude; they just aren’t sure how to ask the question. Usually within the first minute of conversation with them, you know whether or not it is worth continuing to inform them. If they are rude, you don’t need to waste your time with them. But everyone deserves a chance. I also know that sometimes people are afraid to come to us directly. They feel like they are being impolite asking us about our skin, so they ask our best friends, the baristas at a coffee shop, or a classmate. Is this wrong? No, they just feel more comfortable asking someone else.

My roommate from college, Natalie, was always getting questions after I left the room. She always told people that I was willing to talk to them about it, but they felt more comfortable talking to Natalie. And thankfully those who are closest to us are able to pass on the info accurately! The other big difference I noticed when I changed my attitude toward the questioning, the whispers, and the stares is that my confidence grew by leaps and bounds! It got me talking about my skin. It made me realize that I am unique in a positive way. It helped me to share my story. And most people are truly inspired after talking to us…to see the strength we show in our daily lives, to admire the confidence we have, to be amazed that we haven’t let the negativity and adversity of the world to bring us down.

So, can those questions, whispers, and stares be intrusive? Yes, if we let it. But let’s change our attitude. Let us look at each interaction as a rare opportunity to teach, to display our unique beauty to the world, to say "hey, I’m different but different is beautiful", and to be proud of the skin we’re in."

For more posts on Ichthyosos awareness, click here. And for some useful Ichthyosis and appearance diversity resources, click here.

 

Me and my Mum: devouring dinosaur bones and going to the theatre

Over the weekend my Dad spent time scanning old photos and uploading them to facebook. He was probably bored without Mum (she was down in Melbourne with me) and they've also just got the NBN, so hello fast internet!

He uploaded this one - I'd never seen it before. I love my time with Mum in the kitchen. And look how pretty she is!

 

Meanwhile Mum and I spent time wedding planning (who would have ever thought?!), and we went to the theatre to see Once the Musical (again, again!). It was nice. She said "let's take a selfie!", and we did! I love this photo - we're so radiant. She commented that her eyes always look droopy (pfft - they're smile lines and she's gorgeous!) and I replied "you can always have a facelift". And we laughed and laughed.

Gosh I treasure this time with her.

 

These are the bloggers to watch. BUPA Health Influencer Awards 2014

I was so lucky to be involved in the BUPA Health Influencer Awards again this year. The team at BUPA few last year's winners up to Sydney to present this year's winners their awards. I love these awards - they support diversity, good writing and social good.

It is wonderful to see a diverse range of blogs - showcasing diversity - win the awards. A blog about autism, a blog about caring for elderly parents and a blog about animal welfare were among the winners.

And I was SO pleased I got to present Julie from the blog Have Wheelchair Will Travel with the award for best travel blog. When Julie accepted the award, she said she wants to give hope to all parents of children with disabilities - because when her son was born, she was given very discouraging 'advice'. DISABILITY REPRESENT.

Here are the winners - congratulations everyone!

Every Cloud has a Silver Lining - winner of Family Time

Edgar's Mission - winner of Animal Lovers and People's Choice

Lifestyle Fifty - winner of Healthy Lifestyle

Have Wheelchair Will Travel - winner of Best Travel Blog

About a Bugg - winner of Social Good and Best Overall Blog (Renee will donate half her winnings to Autism Victoria!)

The Mummy and The Minx - winner of Babies and Parents-to-be

Scoop Nutrition (not pictured) - winner of Healthy Eating

I love seeing these new (and not so new) bloggers coming into the limelight for achieving great things. Do bookmark their blogs - I've read them all and they're fantastic!

Blogging (and being noticed, making money) takes time and super hard work, whether it's a full time job or on top of your day job (like me) or a hobby. So many new bloggers ask when they will make money. I can't tell them a definitive answer. I make a little money now but not enough to quit my day job. Maybe they will make money from their blogs, maybe they won't make a cent. But to me, the biggest success factor and the most important thing is to be making a difference.

But it is the best job ever. Keep at it.

One blogger I have been reading since before I started this blog is Cate from All Cats Are Grey At Night. We met on the Vogue Forums (a definite reason for me starting this blog was the bloggers I'd read from Vogue). It's been over five years that we've known each other and Friday was the first time we met. So exciting! She's just as lovely, just as kind and smart (AND STYLISH!) as on the screen. I told her that most of my blog traffic comes from her blog roll - let's bring back the blog roll hey?!

I also spent some time with Lee from Supercharged Food - last year's overall winner. That woman can rock a play suit! And she is going great guns with her blogging and publishing career! Her generous advice was to be 'anti-strategy'. She blogs when she feels like it, when she has something to say. "Be honest, be real", she said. "Sometimes it's nice to give people a break from you", she said. She also doesn't see other bloggers as competition - and her candid revelation of earnings AND offers to mentor bloggers to reach monetary success is testament to that. She said "it takes five years to build a brand. Blogging success doesn't happen overnight." Lee and I are pictured with Matt from BUPA.

And the very lovely Sally Obermeder (Channel Seven presenter and blogger) was the keynote, talking about weight loss her career path, struggles with IVF and diagnosis of stage three breast cancer the day before her little girl was born. The ribbon that tied all of the elements of her life together was her here determination. "If I just put my mind to something, chipped away, didn't quit, I would get there", she revealed. Sally chipped away at losing weight. She got out of a job she hated. She worked many unpaid hours to get into TV. And she's in remission from breast cancer. She would say to her cancer "game on mole", handling it with humour, treating it as a challenge. She wondered "how do you raise a child if you've only got weeks to live? How do you tell them everything?" She also reminded the room that even when you've reached a level of success, "you've always got a slog of some kind". The hard work doesn't stop. She told us to "use other peoples 'can't do attitudes' to fuel your success" and encouraged us to "be your own cheerleader". Her talk was fantastic.

Here's what we ate. Prawns and artichoke, roast chicken and chocolate lava cake with mandarin sorbet.

And the day (almost ended) with wine time at the airport. God I was tired when I got home. I was (and still am) feeling under the weather with a chest infection, I was sore, plus it was a hundred billion degrees in Sydney, so I really didn't fancy travel, but the awards were so worth it!

 

 

Taking it gracefully. Unsolicited comments and advice re my skin in the workplace.

 

These things have been said to me in the workplace:

Once in a work lift, someone asked: "Is there a cure for that? I couldn’t handle looking like you." (Superficial much?)

Another time, a colleague brought their partner into work and said: "This is Carly. I've told you about her before. Do you think she's as red as you imagined?" (Gobsmacked.)

A colleague answered my phone on my behalf and then told me they couldn't hear the caller because the headset was caked with Vaseline.

Someone asked me to stop scratching because the sound annoyed them. (I told them that I'm sure it's more inconvenient for me than it is for them.)

An interviewer told me that they worry if I got the job, my face would be a distraction to the doctors who I’d be selling the company’s service to. (I didn't get the job.)

Just recently, someone asked, "What did you do to yourself?"…"What did you do to look so marvellous?" (I didn't know what to say. I couldn't figure out whether they were really asking if I did something to my face or if I really do look marvellous!)

And a well meaning, unknown colleague sat me down to tell me about a treatment that will cure me. (I need to forward then my no cures, no pyramid selling, no prayers posts! People don't seem to remember that I've lived with this all my life and have a great team of specialists treating me.)

Can I also add, the majority of people I work with in my day job and freelancing are very, very good. Respectful, appropriate, concerned without being intrusive, wonderful to work with. And I got nothing but praise for my Minnie ears in the office.

Lately, when I write or talk about these sorts of intrusive, curious encounters, people tell me that I have to expect being asked questions - and answer them, that I have to be more polite in my responses, and that it's my role to educate people everywhere I go. (How can I think strangers' questions are intrusive when I write my blog?, I've heard them say!) There's an expectation that I will take it gracefully. A friend with MS joked to me:

"My name is not Grace and I'm not full of it."

She's right. Assertiveness doesn't make anyone less of a role model.

I understand that way I react will determine how others react. I react politely and positively most of the time. But I also gauge their tone and intent, and respond accordingly. Sometimes it's not possible to be all sunshine and lollipops and things happen for a reason. Sometimes it's discrimination. Sometimes it's upsetting. Sometimes it's hard to hear that we are put on the earth to educate (what about those people we have to educate? What's their purpose?). Most of the time I just want to get on with my day rather than be a higher purpose.

My dear friend Michelle said

"People really need to learn just how inappropriate that kind of thing is. When it comes down to it, unless they have the same disorder, in which I will give a little lee way, or they are your treating doctor, they have no business saying anything except "I read your blog and really want to learn more about your condition." I really begrudge the fact that we are supposed to sit and take it and stuff down how it makes us feel, because the other person is just trying to be nice and would be offended if we respond how we want. Why do we always have to take the higher ground? It gets tiring to have to educate others all the time. It becomes a job on top of everything else."

So, back to difficult conversations about disability or appearance in the workplace. When someone in a position of power - a senior staff member, a client, an editor, or a person of authority - makes an unsolicited comment about my appearance or condition, or gives me medical advice, it gets awkward for me. I don't know what to say. I don't know how assertive I can be. So most of the time I just take it gracefully and smile. Because I think I have to. There's the code of conduct and values we - the recipient and the deliver of clangers - need to abide by, and then there's having to see them again in a work context. Most worryingly, there's the fear that if I do speak up, a future opportunity might be lost. Let the employee with the disability lead he discussion.

I know that some people feel like they know me well through my writing, or my confident, candid and humourous attitude towards Ichthyosis. But it doesn't make it any easier for either of us when they offer advice or make awkward comments.

Mark, a friend and colleague, gave some wonderful advice.

"I think if people mean well then it is less offensive and less inappropriate as opposed to someone who was not meaning well.

I could also understand that it was the people who mean well that are the hardest to deal with as you don't want to upset them or hurt them with a response at the same time you want to be able to explain how what they are saying is not considered to be appropriate by yourself.

I feel that People who don't mean well are easier to respond to as life has a way of preparing a person for negativity. So you either don't care for that persons feelings and you can lash out. Or you can go to your safe place to weather the storm.

I think your best strength in dealing with these situations (advice I never follow is about to be dished) is to be honest and kind.

Look them in the eye.

Thank them for taking the time out of their life to do something for someone else and to think of someone other than themselves.

And then explain:

"While I know your intentions are good, I feel ".

Thank the person again (remember eye contact and smile).

Even if the person does not react well. The fact that you reacted well will see itself paid forward the next time that person want to be well meaning."

Next time this happens I will take Mark's advice. That or put it back on them. Ask them about their appearance. Comment on their food habits. Stare blankly. Because while they mean well, it's not always appropriate or comfortable.

And to those who comment on someone's appearance or disability, or offering them advice, think about whether what you're about to say to them is polite, intrusive, scientifically proven, awkward or damaging to your relationship. If it's in the workplace, chances are, this encounter could be very uncomfortable.

How do you deal with awkward conversations in the workplace?

 

 

Keeping it real: me without my face on. And the most embarrassing thing I've done on the Internet.

A couple of weeks ago, I got home to find I had no hot water. The storms we had caused the tank's thermostat to trip, and I was without hot water overnight. It was fixed in less than 24 hours of the discovery. So thankful!

It's imperative I have a shower twice a day - in the morning to remove the skin that's grown overnight and during the day. The longer I leave it, the more sore it gets - cracks and peeling and a general discomfort. Ichthyosis can be inconvenient when I'm inconvenienced!

I went to my friend Nicole's house to shower, she lives close by. Lifesaver! Poor Adam braved a cold shower.

 

So this is me, the morning I had no hot water, before I'd put my face on - or taken the previous night's face off? I did put pre-shower paraffin on so I am much less dry than when I just wake up, it helps with the face washing. The steam in the shower combined with the paraffin softens my skin. Gosh my hair is messy!

I don't do anything or let anyone see me before a morning shower. I'm a bit miserable, a bit mucky eyed and longing to freshen up.

I Facebooked about overcoming the embarrassment of being seen first thing in the morning when I stayed in hostels overseas:

I don't usually let anyone see me before I have had a morning shower.

You see, I don't wake up looking like the photos I post here, or how you see me in person. I must put my face on to greet the world - or more realistically, take my overnight face off. Ichthyosis means the skin renews a lot overnight and I wake up with a very scaly, very hard to move face. Maybe like Botox meets facial peel. Hideous.

So it's been a big feat for me to forgo some of that privacy these past six weeks - staying in hostels and with other people. And it hasn't been so bad. I still don't look at people in the eye before I have had a shower but I can manage to go out of my room into the bathroom past people.

Hurdled jumped.

I believe that is the first photo I've ever put on the Internet where I don't look and feel my best. Hurrah for a supportive community giving me the confidence to do this!

When I put that photo up on Facebook and Instagram the day after the hot water went out, I asked my community to share a photo of themselves without their face on. And they did, showing their natural beauty, their vulnerable side. Solidarity.

-

And also, just to make this post doubly full of self consciousness, here's a video I did - lipsynching to a Darren Hayes song - for Eden. She's had a really tough time lately and she's asked for people to take part in her international lipsynching competition - to bring some laughter her (and our) way. This is the most embarrassing thing I've done on the Internet. Look away now.

 

 

Why I won't provide disability advice for free

I wrote an article for ABC Ramp Up toward the end of its era - it was about why I won't provide disability advice for free. A couple of months after that, I received a query to talk - for free. It was at a university, to empower students to seek employment in the workforce. Oh the irony. This was my response - on Facebook and to the university:

I was asked to speak at an event to empower disabled students in getting employment. Ironically, there was no budget to pay me as a speaker. This event wasn't run by a charity but an education institute. (No doubt they'd pay a consultant specialising in an area outside of disability. No doubt the person running the event gets paid. For me, it'd mean an afternoon away from my day job, plus several hours preparing the presentation.)

While this event clashed with another I have on that day, I politely declined and pointed them into my article on why I won't provide disability advice for free.

This 'no budget for disability education' mentality is hardly giving disabled students hope for their own employment prospects. It's certainly not empowering.

I'm tired of the lack of worth and respect placed on advice based on lived disability experience.

And I hope others asked to speak at such events will decline, on principle. Don't settle. Sure, do charity work. But don't settle for exposure or goodwill when a company should pay you for your skills, knowledge and lived experience.

After talking with the university, I wrote this on my Facebook:

So... After declining to speak at that university event aimed at disability employment yesterday because of a clashing event AND lack of payment, I received an email from the staff member telling me how disappointed they are in my response that disabled people giving lived advice about disability should be paid. I should be happy to donate my time. And anyway, they don't pay other people from diverse backgrounds either, don't worry. They. Just. Didn't . Get. It.

I also got confirmation of the event I AM talking at that day - a university panel discussion about disability and the benefits of blogging as story telling. And they WILL pay me and reimburse travel costs.

That's how things should be done.

Never be afraid to speak up about injustices or inequality - even if it means you're seen as a trouble maker. Because though that opportunity might be lost, another one will come up!

And here's the ABC article. I've been named a finalist in the 2014 Yooralla Media Awards for this piece:

I believe there is a sense of united empathy between diverse communities, even if our difference is not the same. I find myself nodding when I hear stories from my Indigenous and gay and lesbian friends too.

Back in March I saw my friend Anita Heiss speak at her book launch. She's an Indigenous author - so smart, so funny and so beautiful. A lot of what she said resonated with me.

Anita addressed the 'working for free' mentality geared towards diverse communities. "Everyone wants an Indigenous person to do something, but they're not valued in the marketplace," she said.

Anita told a story about how she had been asked to speak at a public event. She sent her invoice, but the organisers asked to lower it as they already give to charity. "I'm a small business, not a charity," she said, and told them she would donate money to a charity if the organisation's staff did the same. Cue gasps from the audience.

I find this happens for disabled people too. Commitment to engaging disabled people often comes without a fee, also even without consideration that we must take time from our paid or voluntary jobs to give this free advice. It's like we are given unpaid opportunities as a gesture of inclusiveness, or worse, that our qualifications, opinions and experience aren't worth money.

There seems to be the belief that we should be grateful for opportunities, that at least it's something for us to do. I feel there's an expectation that because we educate incidentally in life, we don't mind educating large audiences for a low fee or for free.

Lawrence Carter-Long, American disability advocate, says "If you value the insight and the skill set, the best way to show it is to pay for what you're learning. Changing the world shouldn't require taking a vow of poverty. I'm not a non-profit or NGO. Bottom line? If you value what I'm bringing to you, then pay me. If you don't then that's a clear indicator of what you think our community is worth."

I recently consulted with two organisations for free - providing them with firsthand information about living with a visible difference. I spent five hours at one organisation and three at the other. I took time off from my day job to do this work. I received a snack and a drink from each, and a taxi fare, but no payment.

I'm not ungrateful. I have a full time job with a good wage. I earn money from freelance writing and speaking, plus teaching. And I do work for free for charities and schools. I've done speaking events where I've donated my speaker fee to causes I believe in. I've donated time to a film project for organ donation. I've volunteered at the hospital providing guidance to young people. I write without payment for other bloggers and boutique online magazines. And I am proud and committed to supporting these initiatives.

But when I consult for a private or public organisation, I expect payment. If a company asks me for advice on disability, especially when they'd usually pay a consultant for their services, I expect to be paid. Similarly, if a publication or organisation asks me to write for them for free when they pay their staff to write, and if they generate revenue, I want to be paid. I'd also like a link back to my blog - especially if I've done work for free.

Jax Jacki Brown, a disability activist with tertiary qualifications and lived experience in disability, concurs. "There is this assumption that people with disabilities don't live busy lives and that we should be grateful for any opportunity to educate around these issues. And while I am, and I take my educational work very seriously, it takes up my time, travel and money to do it," she says.

I believe the work that people like me and Jax do in educating people is important in facilitating change and improving access and inclusion, and it deserves compensation. Our work is not to be given away for free.

 

 

 

Living the unexpected. Marriage (and maybe babies).

It's almost like I censor myself from addressing all of the micro aggressions I encounter - because I worry about the perception of complaining too much or finding discrimination that others don't see. They don't see the discrimination because maybe they've not experienced it. But this is my truth, and I will tell it. And gosh it feels good to tell it on my own terms.

I can't wait to be a red bride. I wear my colour with pride, appreciative of the opportunities it's given me. I'm most comfortable in my own skin now, more than ever before. I own my difference. When choosing my wedding dress, I didn't worry about how much skin was exposed, or if I'd be cold. I will accessorise later. My dress is more bride-y than I ever imagined.

But in my peripheral vision - my sixth sense for peoples' reaction to the different - I see surprised reactions. Brains ticking over thinking about how a relationship with the other works.

Writer Lindy West says she can't "wait to be a fat bride". She writes of how people are surprised she's a fiancé, assuming he's her roommate, and laments that she didn't see TV shows featuring fat women in relationships. She never thought she'd get married. I wanted to high five her through the screen. Her words hit home.

"But when I think back on my teenage self, what I really needed to hear wasn’t that someone might love me one day if I lost enough weight to qualify as human – it was that I was worthy of love now, just as I was. So I’ll be fat on my wedding day. Because being fat and happy and in love in public is still a radical act. Attention, every fat teenager on earth: you’re invited."

Replace Lindy's references to her size with my skin and that's me.

I never thought I'd get married. Never thought I'd be loved or love as much as right now. Kids at school told me they were not going to talk about sex around me because I'd never have sex. The independence I gained - by default - meant that I made everything else in life a priority. Education, career, travel. And as I said to a friend, last year this time I had no reason to contemplate such life changing events. But so much has changed in a year. And now I'm living the unexpected.

However, I've noticed an element of surprise about my relationship. For a few months I awkwardly called Adam my boyfriend, worried what people would think. And then I hesitated when I mentioned my fiancé, because I didn't want people to wonder about our sex life (because that's often a common question directed to people with disabilities - and I've been asked about whether Ichthyosis affects sex by a number of strangers). Also, I couldn't quite believe the fiancé thing myself so it took a lot of getting used to.

I was recently asked to do some mystery shopping as a diversity awareness exercise for a friend - store manager. The first thing I asked was whether the store had a bridal registry. The sales assistant looked me in the eye and said yes they do, and explained how it works. They passed my awareness test. The sales assistant looked me in the eye and didn't flinch when I mentioned I am getting married. A pleasant experience!

My test may seem unfair, a little baity, if you will. But the reality in looking different, in having a disability, are the low expectations of finding love (the self imposed and those imposed upon us). Even doctors have preempted my request for a Pap smear with "you've never been sexually active, have you?", assuming asexuality, or virgin status, or how could anyone love me at all? (For more on these sorts of issues, see The Washington Post.)

My Mum tells me that when she mentions I'm engaged to a beautiful man, people are surprised. Some people ask her if he's got ichthyosis too, waving their hands around their face in the international language of 'I'm not sure how to describe the skin condition'. Not that there's anything wrong with me dating someone with Ichthyosis. But there is an assumption that we'll seek similar. It's so othering.

For the most part, thank goodness, people have been so lovely when I tell them. They're so so happy for Adam and I. I remember my day job colleagues squealing and gushing when I told them the news about my engagement. The cute little girls in the class I spoke to in Scotland were queuing up to see my ring. These genuine niceties make me feel so normal.

I see parents hopeful their little girls with Ichthyosis will marry one day, become parents. I don't know if my parents ever wished that for me. I hope they wanted that for me. Even more so I'm so glad they wanted me to have a full life - one where marriage and children may be a part of it, but it's still ok if those things didn't happen.

Like Lindy, I can't wait to be a red bride. It feels like a precedent, a chance to prove the naysayers wrong. While I'm well aware that the wedding day is merely a day, and marriage is for life, I really can't wait to throw the biggest party I thought I'd never have.

Something else that hasn't been in my sights until recently are babies. But with marriage, it's a possibility. I'm 33 next month, and sometimes I find myself getting clucky. I always worry that writing about babies is too personal for social media.

The subject of babies hasn't been the easiest to think about due to the genetic complexities of Ichthyosis, and it's hard to discuss as it's already been fraught with other people's' judgment. But yesterday, I did. I asked Adam if he minded me discussing babies, he said he didn't. And I got the loveliest messages from friends, telling me that I don't have to be a parent to parent.

My friend Lucy said:

"Even if you have no children of your own Carly and Sam, you are wonderful women both doing positive things for numerous girls affected with ichthyosis. I never thought I'd be able to have children, I just had my hysterectomy a week ago. I am sad I'm unable to have more children but yet I couldn't have imagined my life without an ichthyosis child. I wanted so bad to try for another baby and hope Chloe would have someone else who shared her skin. I don't have to do that. I can go online and get/give support that her and I need. You're both amazing women and do more than you know."

My friend Stephanie gave birth to her second baby this week. She's got Harlequin Ichthyosis and was the first person with HI in America to give birth last year. Congratulations Steph - you look amazing and your two kids are gorgeous! I am feeling quite reflective right now. Three friends with ichthyosis have given birth this year, another is due soon.

A baby born into the ichthyosis community is something to celebrate - for the mother and for the little baby. Because it's such a miracle! Maybe it's a new baby with ichthyosis, or maybe the mother has the condition. It's wonderful to know in 2014 this can happen, and there is excellent medical and social care available for the family.

Friends with Ichthyosis have said they never considered babies to be in their future. Doctors never raised it as a possibility and health complications plus the difficulty in finding a partner meant babies haven't been a priority.

I don't know whether I will have a baby. Maybe. That's for Adam and I to decide. There's so much to consider - from finances to genetic testing to nappy changing (!!) and my health. But it's comforting to see it's a definite possibility, that there is medical support and that the little one will be loved by so many.

 

 

 

Lately.

Here's a little of my life lately. It's been super busy. I will resume to regular writing soon. I've developed this disclaimer page to tell you about the time it might take me to contact you if you've left a message. I honestly try to respond to everyone but a busy life means I can't do so immediately.

Reading : I've downloaded a few ebooks lately, because I feel like I should be reading more. I have read Dark Places and Sharp Objects by Gillian Flynn - scary stories but I loved them. I am currently reading Before I go to Sleep, but I am not loving it.

Listening to : Alecia Moore (Pink) and Dallas Green's new collaboration You + Me. Love the twang, the lyrics and the familiar sound of Pink.

 

Appearing : I was featured as Pro Bono's Changemaker last week. Also, I did a little interview with Alice from The Whole Daily who has developed an awesome FREE ebook about blogging. The Daily Dot also republished my Reddit story in Kernel Magazine, and another publication called Us vs Th3m picked up the story too.

Wearing : colour, skirts, more colour. I'm loving this season's fashion, and daring to reveal more outfits on Instagram. Here's me with Sandradee from St Frock a couple of weeks ago - I'm wearing a favourite new dress I won from Sequins and Sand.

Also, I picked up these shoes for $10! I love them (through they aren't very soft to wear).

And this was my outfit for the 100 Women of Influence Awards. I was so lucky to be dressed by Cue. Here's the backstory.

I will be doing a post on clothes and Ichthyosis soon - look out for it!

Cooking : I made a pumpkin pie yesterday, inspired by an online friend Tara. Here's the recipe.

And I made pesto with parsley, kale, mixed greens, lime juice, sunflower seeds and Parmesan. It was so good!

Watching : I spent yesterday afternoon (a public holiday in Melbourne) doing NOTHING! It was wonderful. I watched Chef. Adam bought me the DVD. Gosh it was a good film. Food, social media, family, music. I will take the DVD home to watch with my parents at Christmas.

Have you seen it?

Loving : my amazing Facebook community. I've been spending a lot of time over there in between blog posts, posting links to interesting articles, things I've cooked and just having a chat. And everyone is so nice, respectful and kind - no matter how contentious the post is. I'd love it if you could join me.

How about you? What you been doing?