More thoughts on misappropriation of scary face at Halloween.

I did an interview about my thoughts on scary face at Halloween yesterday. Please be considerate of misappropriation that may offend. It's over here.

And don't read the comments.

My actual writing on this topic is on my blog. It's in far more detail than the interview.

Today three parents of kids with Ichthyosis told me their kids were asked if they were dressed for Halloween. I don't want to know that others think my claims are outrageous. The reactions to these kids is why I speak up.

Related:

Song of the day. Because online comments.

"I'm lightning on my feet

And that's what they don't see,

that's what they don't see.

I'm dancing on my own,

I make the moves up as I go,

And that's what they don't know."

 

 

 

Appearance Diversity: World Psoriasis Day - Hanah's story.

Today is World Psoriasis Day. I'm featuring a guest post by my gorgeous friend Hanah. She has psoriasis - an inflammatory skin condition - and she does so much to raise awareness of the condition. When I saw her promoting the cause on social media, I asked her if she could write a post for my blog.

When I read her words, it struck me how confronted people are about skin conditions. Any skin condition it seems. The questions she answers are similar to what I am asked - and so sare the recommendations for cures. I am forever wondrous (and relieved for the empathy) that while people's conditions - whatever they are - may be different, we can all relate.

Meet Hanah.

"A little over 10 years ago, out of nowhere, I broke out in red, itchy scales all over my body. It was soon diagnosed as psoriasis (suh-rahy-uh-sis). I don't think I have to tell you; this wasn't the easiest thing to happen to a 16-year-old girl at high school.

Since then, psoriasis has impacted my life every day on and off. There have been days where I have kept myself covered rather than wearing bathers or shorts; and days where I couldn’t go to work, because my psoriatic arthritis was playing up in my feet and I couldn’t walk. I’ve hidden parts of my body when photos were taken and untagged myself from Facebook photos. I’ve spent thousands of dollars on treatment options that were time-consuming, disgusting smelling, difficult to administer, and didn’t work. I’ve spent days throwing up from drugs that made me sick.

Most significantly, I’ve answered thousands of questions since that time about why I am ‘covered in red spots’. Most commonly, when my skin is at its worse, I am asked if I have chicken pox, was burnt in a fire, or if I have sun-baked too much. For the first couple of years, when I was covered almost head to toe, the sunbaking question always annoyed me the most, because it put the blame on me. When I was about 18 and working in sales, a lady lectured me for sunbaking and getting burnt and it was mortifying.

Then there was the pregnant woman who jumped back in fright and said (not quietly, either), ‘Is that chicken pox?! I'm pregnant, you have to stay away from me’. Thanks for turning my disease into something to feel guilty about, pregnant lady. Another time, my cousin (12 years my junior), who was about 6 at the time, said to me, ‘Hanah, I liked you better before you had the spots’! Being very young and self-conscious at the time, it hurt a little, but the innocence of the question makes me laugh now.

Nowadays my skin looks substantially better than it did in the early days (the drug I’ve been on for the past year has been very effective and cleared up most of my body). After initial questions these days, I’m then lectured about how to ‘cure’ it. Comments like ‘My friend had psoriasis and she cured it with X’. And ‘Oh yeh, I have dry skin too. You just need to moisturise’. I’ve snapped at sales people in shops who have told me their ‘cure’ and lectured me about how I am doing something wrong to treat it.

I’m a lot tougher than I was as a teenager and most questions don’t faze me now. It’s good that people ask (polite) questions, because hopefully they will learn something. I can only imagine how hard it is for very young children with psoriasis, and I hope the awareness that comes with World Psoriasis Day will help you feel confident and not hide away – it’s not worth hiding, and in fact, sun is so good for psoriasis that it’s worth showing some skin at the beach!

The disease needs more awareness and understanding worldwide – and hopefully one day there will be a cure. Thanks to Carly for featuring this piece and helping raise awareness of this disease. I'm writing this, because it's therapeutic – and because World Psoriasis Day is so important for raising awareness and supporting people who struggle every day hiding their skin.

Remember, psoriasis is a chronic skin disease that is genetic and not contagious. There is no cure, however there are treatment options to manage it.

Get more information about psoriasis, treatment options and support from the National Psoriasis Foundations. Participate in World Psoriasis Day."

 

 

Love Your Sister book giveaway plus TedX videos.

It's been such a privilege to cover some of the Love Your Sister journey on my blog.

Samuel Johnson (actor, voiceover artist and all round nice guy) spent one year riding more than 15,000 km on a unicycle. He did it because his sister Connie is dying from breast cancer. It started off as a dare - Connie joked that he should unicycle around Australia, spreading the breast aware message as her legacy. He took on the challenge and raised over more than $1 Million for the Garvan Institute - the money goes towards breast cancer research. Together, Sam and Connie and the Love Your Sister team have raised awareness and money, and touched so many people on their journey.

I remember that Connie's prognosis was not good at the start of the Love Your Sister unicycle trip. Sam's send off was so emotional - no one was sure whether they'd be reunited after a year. But she was. She was there to greet Sam at the finsh line. Love Your Sister has buoyed Connie. And even after the unicycle ride, she's been touring and fundraising with Sam. She's still here.

When the ride finished, Sam made it his mission to make finding a cure for cancer through Love Your Sister his job. He and Connie have worked with Garvan, spoken at TedX (those are below) and met with the Prime Minister - all in the name of cancer research and awareness. It's given him a new lease on life too. I was lucky to be invited to the Love Your Sister homecoming party on the day Sam returned. There was a special interview being filmed with Guy Pearce - and the conversation was raw. The guests were in tears. I think Love Your Sister has not only prolonged Connie's life but saved Sam. Watch that interview here.

Somehow in between working with Garvan, fundraising, film making and Connie's treatment, Samuel and Connie have found time to write a book!

Here's what publisher Hachette has to say about the book:

"In their book, LOVE YOUR SISTER, these two remarkable Australians share their tale, from their childhood, through to the finish line and beyond in this truly unique story. Part memoir, part travel diary, part conversation, LOVE YOUR SISTER is an inspiring and unforgettable book that shows just how far one man will go for his sister."

You can purchase it on Booktopia, Bookworld, or iTunes. A portion of the sales will go to the Garvan Institute.

I'm excited to give a copy away. Tell me what extreme you'd go to to help your sister (or loved one) fight their biggest battle. Competition closes Tuesday 4 November at 5.00 pm.

Donate to Love Your Sister

Watch my video with Samuel

Read about the Llfe Your Sister return

 

 

 

 

 

On setting blogging boundaries

One of the best things about blogging and freelance writing is all the wonderful people I meet – both in person and virtually. Readers connect with bloggers because they empathise and relate to our experiences. Bloggers share a lot of themselves – anecdotes, struggles, happiness, advice.

The level of personal information we share is different to most other occupations. What I share with readers as a blogger is completely different to what I share with my colleagues in my day job. And I am always aware of the knowledge-power imbalance between bloggers and our readers.

Sometimes I meet readers in the street and they are excited to meet me and they recite the stuff they know about me, and then I realise I don’t know anything about them. And it becomes awkward because all I can say is hello and thank them and ask them a little about themselves in our brief encounter.

When I write my blog, I share a lot of intimate information about what it’s like to look different and have a chronic illness. I receive wonderful emails from readers telling me that until they read my blog they thought they were alone. It’s a real privilege.

I am not your health professional

But sometimes I feel the pull from readers who want more than I can give. I’ve received emails of desperation – asking for advice about treatments and fundraising and even suicide prevention.

I’ve also had messages from people who want to meet me – even just to prove their situation is worse than mine. While I take these emails very seriously, I can’t be responsible for helping everyone who asks. I always acknowledge these sorts of emails – but I tell the person who wrote the email that I am not a doctor or counsellor and suggest they seek professional advice.

Occasionally the person has written back to me a few weeks or months down the track telling me they did seek professional advice and their life has changed – and this makes me so happy. But there are times I just have to take a step back from direct contact.

We need to set boundaries for ourselves as bloggers. While we give so much of ourselves to our readership on our blog, we might not feel so comfortable in a one-on-one situation.

There are also time and emotional constraints on how much we can give our readers. I don’t have the emotional stamina, time nor professional qualifications to give everyone the advice or support they are seeking. I have had to set boundaries about how much I can share with my readers.

If I feel like a reader’s question is out of my depth, I tell them and direct them to somewhere that might be able to help – a support group, Lifeline or a doctor. I’ve created a separate Facebook page where people I don’t know can contact me.

There’s a disclaimer on my blog about me not being a medical professional. And in some extreme cases, I’ve shown emails that I feel scared or overwhelmed by to people I trust – to share this emotional load with me and to alert them that I don’t feel comfortable. I’ve also emailed the extreme cases back to tell them I don’t feel comfortable being in contact with them.

Sarah Wayland, academic, writer, health advocate and a bloggy friend of mine, has given me some advice for setting boundaries as a blogger.

"I think it is important to acknowledge that to share is to be vulnerable – if we honour that then we honour the feelings that come from allowing others to hear our voice. Protecting ourselves is two fold – it has to be physically and emotionally. Being clear about what is safe to share prior to sitting down and writing is key to your protection," Sarah says.

She advises to step back. "Step back when it’s not being helpful. I know in my own professional and personal world I run the risk of being bombarded with the stories of others and I lose sight of my own goals.

"Stepping back is an exercise in mindfulness; it allows us to observe how we are thinking and reacting to the world around us. It quietens down that internal narrative that, when overwhelmed, can be destructive."

Bloggers need bloggy support

I have connected with my writerly friends to seek advice about setting boundaries. They’ve been an excellent source of support because they understand the power of sharing our stories and social media interaction too.

Sarah Wayland also advises bloggers to seek help through support groups (such as blogging communities) and community groups; and if necessary; crisis lines. Finally, Sarah told me to choose what I reply to and how much I want to give carefully.

"If someone is pressing you for more details and you don’t feel safe in that sharing then pull back. I think that most of us know that our online self has different shades to our real life self – we are under no obligation to share if it doesn’t feel right," Sarah says.

"The underlying issue with the conversation about sharing and boundaries is often about values – if we are clear about what information we value as sacred to us and our inner circle then the idea of navigating boundaries can become easier."

How do you set blogging boundaries? Does your personal life and blogging life intersect?

(This post was originally written for Kidspot.)

 

And so we're here. One year on.

It's a year since Adam and I met in person today. We went on a rather untalkative date to a Mexican restaurant. Neither of us thought we'd be here together today.

I saw this quote and thought it matched that picture perfectly.

The way he looks at me. It's love like I've never imagined. He loves me for my everything - even for the things that others couldn't bring themselves to love. A couple of weeks ago I was woken in the middle of the night by his caress on my face. I drifted back to sleep, happy and loved. When he said goodbye to me in the morning, I said "I felt you touching my face in the night". He smiled big, saying he's so glad I felt it. I said that no one touches my face, and so this was the greatest. Those cliches are right. Being in love is like being in our own world.

This love is like a fire. It's certainty, it's fun, it's silly and it allows us to be ourselves.

There's one more first anniversary to mark this year. Aren't we just the luckiest?

 

Sore yet so thankful. Online connection - it's a cheer squad.

 

I was so very sore yesterday. It felt pretty awful. My legs were throbby and weeping and inflamed. I don't know if you know what it feels like to have sore skin. I can't even really explain. It's like my skin is hot and damp, and my limbs are heavy. It feels like my skin is torn. It feels like I can't remember what it's like to not feel pain.

I went to work for a few hours, because a few hours is better than not going at all, and then I went home to bed to sleep. I had an oil and salt bath. And I rested some more. It hurts.

However, I keep saying it, but I feel so lucky for this life! Even during the sore times.

This morning, I'm flying to Sydney to the 100 Women of Influence Awards. I'm worried about flying when my legs are so sore - lucky it's a short flight. I plan to rest up in my hotel room instead of exploring the city this afternoon. Maybe get a manicure if I feel up to it. And then, it's the awards night, a time to dress up and celebrate the way women are changing the world. So excited!

On Monday I was contacted by some former teachers of mine to tell me I will presented with a plaque and my photo hung in the Murray High School 'hall of fame' at the end of the year.

I'm even more excited to be able to talk to the students about appearance diversity and acceptance, and about finding your tribe - a message so important for those who feel alone.

That event will be the first time I've been back to my high school in years. I went on stage to accept various awards, but I'd never spoken to my peers. I always imagined that if I did, I'd be laughed at. Sniggered at. Not paid attention to. Come December, I will have trepidation. School was not a good experience. But it's such a privilege to have a small moment now, as an adult, to address my school. The students aren't my contemporaries, but it will feel like I'm talking to the class of 1999. I've got so much to say.

I just can't believe the life I've created for myself. As Darren Hayes sings, who would have thought it could be this amazing?

-

Being online so much, and being connected to so many people affected by Ichthyosis, I see so many people who uncertain about their future. It's hard not to take these on as my own worries. I want to let people know they're not alone. I am always quick to welcome someone and offer them an ear - or set of eyes - if they want to talk (or tell their story on my blog).

I understand that parents (and patients) grieve for a life that could have been. I know how hard it is. I know the not knowing. Wondering whether life will ever be 'normal'. Feeling as though they are, or may be, missing out. Resenting the cream and skin that gets everywhere. I've been there. My parents have been there too. I maintain that life with Ichthyosis will be hard, but it can be amazing, if you let it.

I can't promise that it will happen soon, it might take years of feeling lonely and like an outcast (like I did). And it can be physically painful. I don't mind looking different, but what I'd give to have pain free skin. I get it.

When I was laid up in bed yesterday, elevating my legs to reduce the pain, I saw a post from a mother. She worried that her child was missing out, that she would face rejection because she's not like other kids. It saddened me. I wrote back, telling her what life has been like as an adult with Ichthyosis. I said:

I can tell you that life with Ichthyosis is hard, but it can be wonderful. I never feel life I've missed out on things...Things were hard for me, especially at school, I faced a lot of rejection. But they did get better. Your daughter is different to other kids, but she's not missing out if she has the love from her parents and family and friends, and the encouragement that she can do anything she wants to (even if it's a little differently to how others do them). Physical appearance is not the defining feature. What's important is a kind heart, inclusion and good values. If your daughter has these qualities, I am sure she's well on her way to making some strong friendships.

And then a woman who also has Ichthyosis wrote about how she is married with two grown up kids and works as a neuropsychologist. She said "life is what you make it". Yes it is! My friends Hunter and Bailey perform concerts together to raise awareness and funds for Ichthyosis. Mellissa, who I met in San Francisco, is about to have her first baby. Little Evan goes to preschool and LOVES it. Katie is studying to be a nurse, she's recently interned at an African hospital. Jeff is a Cub Scout leader, teaching children life skills and values. Larisa is a teacher. And baby Mason loves to get into mischief. These friends, and many others, are just going about their life, being ordinary through extraordinary circumstances.

This connection we have through the Internet brings a world of support that - sadly - many people never get in person. It's a chance for us to shine, to tell our stories and be ourselves. And we can lean on each other. This online connection is an empathetic cheer squad, a band of security guards ready to tackle any bully we're faced with, a fan club, a mirror to make us see how worthy we are.

When I read stories of little girls being bullied in a dance class because they look different, or little boys being excluded and called names, I leave a message for their parents to pass on, telling them how amazing they are.

Every day I am grateful for the support I get, and I am so glad to see it given to others in similar situations too.

While sometimes people might see me as unrealistically positive, or a little too chipper considering I'm in a lot of pain, or too enthusiastic to want to tell my story to the world, I will continue to let parents and patients know that life with Ichthyosis is hard - it's so damn hard and sometimes it feels like my skin is on fire - but it's amazing.

-

I made this video last year. I hope it gives you some hope.

 

 

Paint the town Ford: road tripping to the Mornington Peninsula. Competition closed.

This post is sponsored by Ford and Kidspot. There's a chance for you to win a $500 Temple and Webster voucher too. This competition is now closed. The winner has been notified. Thanks for entering.

Earlier in the year, my little old reliable 23 year old car went to the wreckers - it died an accidental, premature death. I didn't have a car for quite a while because I went overseas. As serendipity would have it, I was offered a loan of a Ford Ecosport for six weeks.

I was SO EXCITED to be able to drive a brand new car! Living in inner Melbourne, a car has been a nice to have, not a must have. It's not so necessary for me to have anything more than a reliable, safe and economical car as I live so close to public transport and walk around my local area, and now Adam drives me everywhere else. I've had three cars of my own - and they have all been old (one was older than me!). None of them have been fancy. So It was such a novelty when the Ford Ecosport arrived and I didn't even need a key to turn it on!

My first adventure was immediately after I received it. My friend Kate was stranded with a suitcase and a bike! I couldn't let her get home on six wobbly wheels! The bike fit in the back and we had a lovely chat on the drive home.

Her verdict: "everything is intuitive except for unlocking the boot". (That works when you open the driver's door if you're still inside the car, or unlocking it when everyone is out of the car.)

The Ford Ecosport is like a skinny car in a fat car's body (probably like me!). It feels small and zippy to drive, but it sits high enough above the road to give the driver a vast view and a soft ride. Its size is perfect for the city. I admit that I don't drive much but this past month I've had performance rehearsals across town and I didn't even mind sitting in peak hour weekend traffic because the ride was so enjoyable. (What is with peak hour traffic on the weekends?! It's as bad as in the week!)

It's got some other amazing features that I haven't had the privilege of experiencing in a car of my own before:

- Keyless entry (to help when your hands are full) and ignition (this was like real life Beyond 2000! - I just needed to put my foot on the brake and press the Power button to start it!

- A little spot in the car's ceiling to hold sunglasses.

- A shelf in the glove box to hold a small box of tissues, plus the deep part to hold CDs, the manual and other stuff.

- A USB outlet to charge my phone (any phone or music device) and make the songs play through the stereo.

- Reversing sensors and a screen that showed me how close my car's rear end was to the object behind me.

- Auto headlights - great for me who forgets to turn on the headlights in the Burnley tunnel.

- Adjustable seats that could be raised and lowered. I tested out how sleepable the seats were (very!). They reclined nicely.

- A boot big enough to hold a bicycle.

Adam and I went on a road trip to the Mornington Peninsula last weekend so we could explore all features of the car. The weather was perfect for our day out.

I have only been to the Peninsula once before. This time I took the sea views and cute sights along the way. I snapped pics and uploaded them to Instagram, my instafriends giving me advice of where to stop next! We had lunch, looked at galleries and shops and went to a cheesery. We forgot an esky but the car's glove box is cooled so we were able to store the cheeses we bought from Red Hill.

Adam had the chance to test out the sports mode when we took the windy hills overlooking Port Phillip Bay. He liked this feature - he said "it helped me accelerate a bit quicker, helped with the hills, and I didn't have to push the pedal down as far on a steep slope".

I loved the stereo - It's all hands free, controlled by voice command - I just have to say "sync". The sound quality was great and I could play music through the radio or my phone either on BlueTooth or USB. I made my first ever phone all while driving (again, such a novelty!). "Hi Mum! I'm calling you from the Ford! Look, no hands! Gotta take the next exit now! Bye!" And I could adjust the volume of the stereo on the steering wheel. Adam and I did a lot of singing and seat dancing in the Ford - the climax was Shake Your Tail Feather - where bemused onlookers were totally jealous of our dance moves.

It was so nice to get away for the day. Life has been busy, and that outing on a sunny Saturday refreshed us. Having a loan of the Ford Ecosport made me realise that a car is not just for getting from A to B. It's for creating a great journey to get to my destination. Thanks so much Ford and Kidspot.

 

 

So now it's your turn. To celebrate me loving this car so much, I'm giving away a $500 Temple and Webster voucher. In 25 words or less, tell me where you'd go on a road trip.

Entry is open to Australian residents only. One entry per person. Entries close on Monday 27 October.

 

 

Sticking my hand in a giant tub of paraffin will probably feel like I'm helping a cow give birth.

I ran some errands this morning - visits to the post office and pharmacy.

The pharmacist made me up a two litre tub of cream (my usual mix of 60% soft white paraffin and 40% liquid paraffin). My tubs are usually 500 grams. This is huge!!

I imagine dipping my hand into this giant tub will feel like a farmer who helps a cow give birth.

Ichthyosis can be messy, itchy, embarassing, inconvenient and can attract stupid comments. Thank goodness for seeing the funny side!

Tell me something funny about your disability or illness?

(Also pictured are some products I use in the bath/shower: table salt for baths (cheap and good for infections), MooGoo eczema and psoriasis cream (I have only used this on my hands), Aquaphor bath wash (DeDe gave it to me in her wonderful houseguest hamper when I was in Connecticut - it's a non creamy bath wash, and a good size for travel - I will reuse the container), and a large pump pack of QV Gentle Wash (I decant this into a smaller bottle and use in the shower - it's a great every day wash, though I prefer MooGoo Mini Bubbly because it's even gentler and leaves the skin in tact when I wash - I don't scrub like many people with Ichthyosis do).

Reflections on final high school exams, 15 years on.

Final high school exams have started in Australia. I hope the High School Certificate (HSC) students went well with their first exams on Monday.

Please remember your end of school exams aren't the be-all and end-all of your life. There's so much ahead of you. Doing you want to do is a journey, and you don't have to know what that is at such a young age.

I sat my HSC 15 years ago. It was full of humanities subjects - 3 Unit English done in the early morning hours before school officially started, and General Studies instead of Chinese - a subject I'd given up after I couldn't go to China the previous year. I studied Shakespeare and Charlotte Bronte, the impact of the Vietnam war on Australia and John Donne poetry. I did Maths in Society (I did MUCH better at that compared to the advanced maths I'd done in the junior years) and Biology. I also did art, enjoying it so much that I'd applied for Art History at the University of Western Sydney (and got in). I was a very good student but in the end, my HSC was only worth 74.65. Just a number. It doesn't matter now.

Oh I was a dreamer, buried in classic books and poetry, loving history of the world and arts, and thinking too much about bad boys I was chatting to the Internet. Most of my swot-vac was spent writing poetry that was a cross between Douglas Stewart and Silverchair's Neon Ballroom album (I was heavily influenced by the words I studied). I had very few friends. I'd not touched a drop of alcohol, or even kissed a boy more than an apprehensive peck on the lips. I was scrawny and nervous, lonely and creative. That's me up there. I knew there was more for me out of the confines of school.

I didn't get the amazing HSC score I wanted, I didn't go on to do the university degree I had my hopes set on (journalism). I did a Bachelor of eCommerce - in fact I really hated half of the course (the numerical subjects). I had never failed anything until my first year of university. I had also never worked so hard to stay afloat. I was paying for this degree. It was tough.

However, I made some amazing friends at uni and at my part time job, learnt some life and career skills and went on to a stable day job.

And now, I'm doing the stuff I want. I studied journalism after my undergraduate degree. I have a day job and write on the side. I've won some awards, written for some big media outlets, been overseas, lectured at a university, fallen in love. When I sat my HSC I never dreamed I'd be doing exactly what I want 15 years on.

So final year high school students, I implore you not to put too much pressure on yourself. It's just a number. No one cares about what your final mark was 15 years after school. Focus on being a good person and on happiness. Place less emphasis on that golden score. There's always another chance.

If you find yourself doing something you don't love now or next year, trust me, there's plenty of time to work towards doing that thing you do love. You might have to stick it out for a bit, but sticking it out makes finding your way so much sweeter.

Just do your best.

How did you do at school?

Are you now doing what you set out out to do at the end of your schooling?

Have you ever used algebra?

 

Recovering from blogger burnout. Losing myself in shaping my blog.

I wrote some of this post, ironically, after I said I need to take a short break from blogging. I was writing again pretty much immediately after pressing publish. I got this amazing comment on my blog, after that post. It spoke to me:

"This is just my opinion, so take it for what it is worth.

Content does not always have to be "research, back linking, proofing, social media promotion" - I'm reading *your* blog, and it is ok to be you. Not some content producing robot. It is ok to just post a photo and/or a quick thought, or a link to something you read which you found interesting.. a memory, a this is what I did today, a recipe you love..

"bloggers are being encouraged to"

And who exactly made that person king of blogging? :) I think "problogging" can be a great thing at times. Sometimes, it can put massive amounts of pressure on people to be a certain way or produce posts which totally and completely bypass the reason we - their readers - loved them in the first place.

I find this seems to happen a lot after "conferences" where people are told all kinds of wonderful things and then they want to come home and put all this stuff they were told into action, and in the process they lose the one thing which most of their readers loved about their blog - themselves. :(

"I want each blog post to move a reader."

And wouldn't that be an exhausting blog to read, not to menton write - for every single post to move your readers. It is ok to move people on an irregular basis. It is ok for moving people to come as a surprise to your people, and not be an expectation for every single post written. I think you want to move people once a week at most, otherwise you'll burn out your readers as well as yourself. :)

Just be you. I like you, for who you are, not the "content" you produce and twist yourself into pretzels to create. Pretzels can be fine, they can be awesome, but if you have them each and every day, you crave icecream, or a macaron, or a cat photo. :)

Do your own thing. Be who you *are* - not who someone else says you should be, not someone you are "encouraged" to be. That is the reason I subscribed to your blog, and I am sure I am not the only one who feels this way."

Thank you so much Snoskred. That comment! I needed it! I get you and agree with you and this is what I wanted to read. Somehow I may have lost myself in shaping the direction of my blog. Somehow I've made myself busier!

I do feel the pressure to write, to perform, and like everything I do in life, I'm a perfectionist. I write for me - and so my theory about perfection vs excellence means I strive for perfection rather than excellence. It's silly isn't it? Feeling the most pressure from ourselves.

I came back from Problogger with so many good ideas. I've already been filling up a notepad, talking to people who can bring these ideas to life. Funnily, many of those don't involve actual blogging. Those ideas are all about blogging, but use the blog as a springboard. And so while I want to focus on building those projects - all will be revealed soon - I need to just be. And I've enjoyed taking some time out, reducing that pressure to have something on the blog every second day.

A blog conference always leads to heightened inspiration - the content coupled with being in the presence of like minded people really does make you realise your potential. But there is overwhelm - of the crowds, the wonderful inspiring speakers, the ideas that you come back with, and also the experience of being away for a weekend. If there was a scale of overwhelm, I'd say this type is at the good end. I'd much rather be overwhelmed with excitement and inspiration than anxiety, fear and idea blockages - but I acknowledge that for many, these conferences might leave them feeling all of those things on the not so great end of the scale. When I got back from Problogger, I did notice bloggers wonder if they fit in; if they're doing it right. The ever lovely Pip Lincolne has some nice advice about how to overcome the overwhelm.

After blog conferences there's a danger of comparing ourselves to each other. The thing for me is that I keep comparing myself to what I've already done and want to do more. I compare myself to my last achievement and want to do more, do better. This is blogger burnout.

While blogging hasn't stopped being fun, the pressure to produce a post - or content as it's known in the industry - is tiring. For now, this isn't a full time job. I've been looking to decrease my day job hours so I can do more of this amazing writing and speaking career. I don't want to just be producing content, because that seems robotic. I want to keep it interesting and topical and continue to educate. But as my dear commenter said, it is ok to move people on an irregular basis.

This isn't a whinge about the sheer volume of wonderful opportunities that have come my way because of blogging. But the input definitely doesn't match the output. I did some invoices in bulk recently and the money I've made in projects away from my blog was more than 10 times the amount I've made through ads and sponsored posts here. It is hard work.

I've also found recently I've began to temper myself more online. The more of a following I have, the more conscious I am about what I'm saying, how I'm presenting myself online. There have been times I've been questioned for having an opinion on experiences and issues - because there's the belief my opinion contradicts my appearance activism.

I don't style my life online, but I am focused on what I write here - trying to ensure I set a good example, that don't contradict what I stand for, and knowing that what I do write may be scrutinised and criticised. But sometimes I will have an opinion that doesn't seem like 'me' - the online Carly that readers are used to seeing online - and that is ok. Please don't be disappointed. Hell, I commented on our Prime Minister's budgie smugglers recently and was hauled over the coals for not being true to my appearance activism work - I was told I was body shaming him. I wasn't.

I read an article about whether personal blogging can survive monetisation and this paragraph resonated with me the most:

"Most of all, when you blog about yourself, you’re putting YOU out there for strangers to judge. Most 99% of the time it’s good. But there will be times when people will judge, say they don’t like what you’re doing, or what you’re wearing and you will have to be tough enough to live with that judgement."

You do have to be tough. It's funny how out of a bajillion lovely comments, the not so nice ones stick.

There are opinions I'd love to share but, for many reasons, I can't. Having an opinion has cost me friends. And truthfully, I'm devastated. Having an online opinion is probably harder than in 'real life' opinions because there's no body language or fluid back and forth conversation for the intention to be interpreted clearly. And it seems that it's more difficult to clear the air in person when communication with them is mostly online. And the worst is when people who don't ordinarily contact me do so just to disagree. I'm all for differing opinions but if a differing opinion is all you're going to offer, then I'm going to feel hurt.

I've recently seen some commentary about blogging (and other issues) online that has caused some heated words. Looking at these examples, and also experiences I've had, I wonder whether we are able to ever ask questions about blogging/bloggers' behaviour/social media online or is this something to ask in person? Does this commentary get more dramatic online because of:

-the chance of misinterpretation

- the length of question and answer

- the pack mentality of the replies

- replying in the heat of the moment

- the ease of typing something compared to talking in person?

I don't know. I do think conversations aboutblogging issues, online behaviour and etiquette need to be had - the more transparently the better, but I question whether having them online all the time is the right platform. (I saw this post about that topic on Facebook - must listen to the podcast soon.)

We're making this blogging business up as we go along. That's how new it is. Sure, there are many experts providing us great advice. But the great thing about blogging and having our own blogs is that it can be anything we want it to be. It's ok to slow down or change direction or only post on Sundays.

Me? I've got to keep telling myself that it's ok not to go at full speed with everything I do. It's ok to let some of the day-to-day posts creep back into this blog. And it's ok not to be liked by everyone. It's good to find myself.

 

 

 

 

Building confidence in children with visible differences.

Recently, a friend told me about her son’s reaction to someone commenting inappropriately about his Ichthyosis. She said it was not confident like it would have been a year ago. He looked down on the ground and said nothing. I felt sad for him – and could relate.

Sometimes it seems like the questions we receive about our visible difference can define us. They can make us feel worthless, that we’re no more than a red face, and they can make us feel tired – it’s relentless.

I suggested that she get her son to list all the great, fun and special things about himself, aside from his skin, so he has this list to remember when people question him.

Or better still, organise an after school play session with some of his friends and encourage them to create a collage featuring positive statements about each other.

When I mentored chronically ill young people at a hospital a few years ago, I received a ‘warm fuzzy’ after each camp. Each camp attendant did. Warm fuzzies are books featuring words and pictures from campers about the difference the warm fuzzy recipient made to them.

Camps were often emotional. The young people (and me included) challenged themselves to do physical and emotional activities – high rope climbing, rafting or song writing. Some of the young people were mobility impaired and modifications would be made for them to participate in the physical activities they wouldn’t usually be able to do outside this supervised, accessible environment. It was so wonderful seeing them achieve what seemed like the impossible – swinging on a flying fox or building a hut from scratch. And these achievements made everyone emotional – from the young people, the volunteers and the nurses and doctors who assisted at the camps.

So the messages in the warm fuzzies were often of awe – describing what it was like to see someone achieve a goal or push themselves. These messages remind us we can, when we think we can’t.

I treasure my warm fuzzy books – often reading them when I need a pick-me-up or remember that I’ve made a difference to someone. I know the young people I mentored value their warm fuzzies as much as I do.

Child behaviour consultant and researcher Nathalie Brown says, "Encouraging children to realise the good in themselves when they are different is 24/7. You need to build up their self-esteem as much as you possibly can.

"I love the warm and fuzzy book idea or you can create a book using a display folder that you add to every day. Each page is all about them, things that make them happy, activities they enjoy doing, a list of friends, games they like playing, my wonderful family, things I can do, things I would like to do and so on.

"You also have to speak to them about how others may perceive them as different – because they don’t know any better. And how it may make them feel sad when others say not so nice things or ask questions and how you will help them. The help can involve the school talking about differences and acceptance, talking to the other parents at school and how they can talk to their children about acceptance and kindness, encouraging play dates, finding children with differences to be pen pals with, joining a support group together. But most importantly, not losing sight that they are a child and children thrive on love, empathy and fun."

How do you build confidence in your children?

(This post was originally written for Kidspot.)

 

How wonderful life is now that you are in my world.

Today marks exactly one year since Adam contacted me through OK Cupid. I went back through my emails confirming the date - and while I can't see his full message because I no longer have an account, I could see that he told me I seem like a nice person and that he likes my smile. At first - because of a bit of spelling judgement and assertive activism on my part - and some very uneventful dates - I didn't think it would work out between us. But I'm so glad he was tenacious in his perseverance, and I'm so glad I gave him a go.

Every nignt we talk about the best thing about our day. "You", he tells me, without fail. He just has to look at me and I know he loves me.

Love is hard - it takes work. The mundane can detract from the romance. There are compromises and a whole lot of learning for both of us. But it's so worth it. He's my biggest fan, and I'm his. And we've both grown incredibly.

Who would have thought our lives would have changed so much in a year? A proper relationship. An overseas trip. An engagement. A change in jobs for both of us. Moving in together. Just wow.

There will be more anniversaries in the coming weeks. Our first date, our second and third dates. The one where he took my hand and said he was my boyfriend. But today, a year since he sent that hopeful message, marks the moment he came into my life.

How wonderful it is. How lucky we are. This is the love story I've dreamed of being a part in.

Here's his song for me, the one he sent me before we'd even met.

 

The Australian Financial Review and Westpac 100 Women of Influence Awards for 2014

I am excited to announce some news - I've been named a winner in the The Australian Financial Review and Westpac 100 Women of Influence Awards for 2014 - it's for my work in promoting appearance diversity through writing and speaking. Read the news story here.

It is an honour to be named as a Westpac Financial Review Woman of Influence - the calibre of women is outstanding. It is great to see the diversity of winners. Many women I admire are current and past year winners - some I am lucky to call friends and mentors. Congratulations to them all.

I have worked hard at blogging and branching out to showcase appearance diversity and promote inclusion. I would like there to be a greater representation of diversity in the media, so we can normalise appearance diversity. Body image and diversity is so much more than fat and thin, and it's so good that powerful women in the media like Turia Pitt, Francesca Martinez and Stella Young are bringing diversity into the mainstream.

I also think blogging is at the forefront of diversity in the media- showcasing all types of people - their image and stories - and I'm so glad to be a part of this. It's so good to be able to make our own media so our stories are told fairly and without exploitation. I'd like wider society to see beauty in those who look different through getting to know their stories.

Thank you to Westpac and the team of judges for recognising me. Thank you to my wonderful online community (especially those people who have contributed guest posts about living with Ichthyosis or a visible difference) and my friends and blog/activism colleagues for helping me on my journey - your support is so appreciated. Thank you to my amazing employer who supports the work I do outside of my day job. And thank you to the people I love the most - Adam and my Mum and Dad - for always being my biggest fans.

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Now in its third year, the 100 Women of Influence Awards celebrate outstanding women from a wide variety of sectors across Australia. There are ten categories: Board/Management, Public Policy, Young Leader, Social Enterprise and Not-for-profit, Philanthropy, Global Influence, Innovation, Local/Regional Community, Diversity and Business Enterprise. Entrants into the awards were assessed by a panel of esteemed judges and have been recognised based on their outstanding ability to demonstrate vision, leadership, innovation and action in and beyond their fields.

Gail Kelly, Westpac Group Chief Executive Officer said, "The breadth and calibre of our 100 Women of Influence for 2014 is remarkable.

"It is such a privilege to be able to recognise and celebrate the outstanding contributions these women are making to Australia. The 2014 winners will join the now 300 strong, prestigious alumni of these awards.

"With over 40% of leadership roles at Westpac filled by females, I am fortunate to be surrounded by inspirational women every day. We are blessed to have such great numbers of influential women doing incredible things in many industries and organisations right across Australia", Gail Kelly said.

On Wednesday 22 October, a gala event will be held at Sydney’s Town Hall to celebrate these women and the significant impact that each has made within their chosen field. The ten category winners and overall winner for the year will also be announced on the evening.

For further information please visit: www.100womenofinfluence.com.au.