Nine nice things to do for your friend whose chronic illness has exacerbated.

 

I don't know about you, but sometimes I feel that a chronic illness can be a bit overlooked by people around me. I'm not saying they don't care, but it's either no surprise or a big surprise when I get sick(er), because the chronic illness is present all the time. It's not like breaking a leg or getting diagnosed with something. Those are unexpected things, often met with a lot of shock and rallying. (And in no way am I trying to compete in the Oppression Olympics when I write this.)

Because I'm not "well" all the time, it might be a bit run of the mill for others when I get sick. But for me, it feels like the wheels have fallen off - I'm made to relinquish the life that's been going so well, for a short time at least.

I've not been well for a while now, and I've been a bit miserable. I've had time in hospital, and time at home alone recovering. It can be lonely. What has cheered me up is the thoughtfulness of friends. I don't know whether it's been because I've been more vocal about being unwell this time, or if I've surrounded myself with kinder people, or if I'm more popular (ha!), but gosh people have been lovely. So lovely, and I'm very thankful to have them in my life.

Here are some nice things to do for your friend whose chronic illness has exacerbated. I've appreciatively been on the receiving end of all of these and so I can highly recommend doing these!

Cook your friend a meal.

Sandra did this for me a few years ago and it was so lovely! She brought different courses into hospital, and I had some to take home with me. Most meals were healthy, and there were some treats in there too! Better than hospital food!

Talya from Feeling Ostomistic suggested:

"Make them a dish/meal that could take a couple of nights cooking off of their minds. You don't have to see them if you know they are wanting privacy, but can leave it on the doorstep and send a message saying "I've left something on the porch for you, when you're ready for visitors let me know"."

Tell your friend you're thinking of them.

A phonecall, text or Skype chat is often welcome. I've had people text me asking me to call them when I'm up to it - this has been nice, because it means I can call them back when I'm up to it.

Maree says

"I genuinely appreciate a card/letter- snail mail. It picks me up so much to think that someone has taken the time to write, put a stamp on and mail it. I've been blessed to have this happen when I've been struggling hard, but have been trying to keep up a good front."

A visit is also nice, if your friend is up to it - Jarrod came to visit me in hospital and it waa a nice way to break up naps.

Buy/bring your friend groceries.

Camille bought me a heap of soft foods to eat when I had my wisdom teeth out, and it was seriously a lifesaver. I had gourmet packaged soups, sweet potato, avocado and icecream! She said she chose things she enjoyed when she was unwell.

Even carrying shopping bags is a help - I've had a hard time holding things, and so if someone else carries the bags, it's a huge help.

Put together a care package.

One night, I got a lovely surprise when Clem Ford came into my hospital room with a giant bag of gifts from the Lady Star Dream Team (Clem, Karen Pickering, Catherine Deveny, Amy Gray, Pip Lincolne, Jamila Rizvi, Van Badham and Chrissie Swan!). I had mentioned to Adam that I'd like some green tea the previous night, and he smiled at me and said "someone will bring you some tea tomorrow". He sneakily coordinated her visit.

I didn't expect to receive such a bounty of gifts - 10 types of green tea, plus a beautiful cup, a dressing gown, a book, and things for when I'm better - tea towels, an apron and a candle. Oh my heart! Plus we had a lovely chat and laugh. Now I'm home, every time I look at the cup and the tea towels, I think of how lucky I am to have these lovely friends.

Love, Emma sells premade luxury care packages - I bought one for Michelle and she loved it - see below. Michelle told me she has hung the dressing gown up behind her door to look at and remember the gesture.

Lend out your TV subscription service.

My uni friend Jane gave me her login to Stan TV. It changed my life. I binge watched two seasons of UnReal in three days - what a clever, intriguing show. While I've wanted to catch up on a little writing and admin, my body says no, so TV series on my laptop or iPad it is.

I'm signing up to Stan myself now.

Ask what you can do to help.

I've had a lot of people ask me if they can get me anything - and I asked for some soft socks which a friend delivered.

I do need help doing things. I've asked Adam for help of course, and he's been wonderful. He lets me sleep, cooks dinner, brings me meals in bed. Last Saturday morning, he made me chocolate pancakes for breakfast, and served a hot chocolate in a flask because he knew a cup would be too hot for my sore hands to hold. It's the little things ❤️

Talya says:

"If they (like me) don't get out much and if they're using a wheelchair that needs pushing offer to go for a drive somewhere and go for a walk and you'll push them."

Don't try to compare or give advice.

One thing I've noticed is when I write about the pain aspects of my condition online, people give me advice.

Have a cold/hot/salt/bleach bath. Take an antihistamine. Do wet wraps. I'm doing all these already.

I've tried so many things to help me over the years. And a lot of this advice is given by people who don't have Ichthyosis. It's so hard to write about this because it's all been well intentioned, but I'd rather just well wishes than advice.

The same goes for trying to compare. Sure, empathy is welcome, but the pain I feel doesn't really equate to the pain from a gym session.

Respect your friend's boundaries.

Respecting our boundaries might be not asking too many questions about specific illness type symptoms, or it could be around not making our loads heavy with your stuff.

On the day I went to hospital, Daily Life published a very serious article I wrote the day prior. It was about the Japanese disability murders. My editor told me it was the top story on the site for two days. So many people were sharing it, tagging me in, and trying to engage me on the discussion on Twitter. It was great to see people finally talking about but I didn't feel up to talking about it while I was so unwell.

While I was in hospital, I also had people asking me to share their crowdfunding cause, read their articles, tell them my opinion on a disability issue, and received a callous email from a parent of two disabled adults. No.

Social media is my lifeline when I'm unwell. I didn't want to stop talking to people, I just didn't want to get into heated debates about the worth of disabled people's lives. So I called for that. People respected it. They sent me funny pictures. My editor even removed my Twitter handle from the article. And I was so grateful.

I'm still not taking on any writing and activism stuff until I feel up to it.

Empathise that this really sucks.

I am lucky enough to know a few others with chronic illnesses and disabilities. Without burdening them, I've been able to rant about the pain or the delay in my essential creams coming from the hospital pharmacy, or the damaging perception of the "healthy disabled" (when, for me, that's not the case at all).

And when I've not been as unwell as now, I've been there to listen to their rants too.

Surprisingly, a text from a friend saying "this really sucks" is as comforting as "get well soon". Acknowledging our reality is nice.

Pip Lincolne also wrote a great piece suggesting things to say to someone who isn't having such a great time.

Have you got any tips to make a difference to a friend with a chronic illness?

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

 

There are no wins in having it worse. Chronic illness and disability hierarchy.

This is sore, and this is sore.

On the left, I'm dressed for work. I need to work - to pay rent, to be able to travel, eat out, buy clothes and save for the future. I also need to work to feel valued, to be involved, to contribute to society and to use and develop my skills. And it's a social outlet.

On the right I'm dressed for hospital clinic - as a walk-in patient because I really needed to see a doctor. I saw five doctors and a nurse at the hospital - all offered me advice about antibiotics, immunisation, pain relief and infection control. It was good to talk to professionals who understand.

The photos were taken less than a day apart.

While I am lucky to lead a really full, active life, I'm still sore. I rest in bed a lot. Most of my writing is done in bed. Though I'm smiling, I'm still sore.

I wear pyjamas a lot. I wore them to the hospital. Thank goodness for the fashion gods that have made soft pants a trend, and pyjama pants stylish. I also wear pretty dresses - I love to dress up.

I've been very sore for the past six weeks. Those who aren't close to me wouldn't know it, because I look the same and carry on the same most days. Always red, mostly smiling, my mind never switches off.

Someone recently said I can't really be in pain because I lead an active life (working, travelling, writing, in a relationship) - and that's unrelatable to others in pain, who are unable to lead active lives. Bullocks to that. It's only one person who said these things, but I can't shake it - especially when I'm not well. I always think of their words now.

This kind of hierarchy in the disability and chronic illness community is damaging. It plays on self esteem, confidence and validity of illness, disability and pain. It diminishes achievements. And it contributes to the constant guilt of being unwell - even when I am 'overachieving'. And I bet it's a lonely, resentful existence for those perpetuating it.

I absolutely acknowledge that many others have it worse than me. And others have it better. But I don't pit us against each other. Hierarchy of conditions is rife. This isn't the only time it's happened to me. And I see it happening to others too - medical conditions are often an excuse for bad behaviour.

The "healthy disabled" are disregarded, an assumption that they haven't got much going on that affects their health.Yet I know people in wheelchairs, who some would assume only have a mobility restriction, who are fighting for their lives. Since I've identified with having a chronic illness and disability, I have noticed that while we have different diagnoses, our experiences are similar - especially the way society puts up barriers for us. We shouldn't have to fight the battle within our community. As I wrote four years ago, one upmanship isn't cool.

I wonder whether being around others with chronic illness and disabilities perpetuates one upmanship, especially when those people are online. In 'support groups' (which aren't half as supportive as the title suggests); there is a race to the rarest. Memes are made, with slogans of reality - broken bodies, lonely minds, families not believing them. It's easy to evoke empathy from these memes, but it's also easy to question whether they serve any purpose other than dwelling. And I also wonder if this hierarchy is perpetuated when some don't have a broad political view aaboit disability?

Mum tells me not to worry about what others think of me. And usually I don't. But this hurts. It does. Pain is not a competition or something to be invalidated by someone else experiencing similar. There are no wins in having it worse. No one knows the pain another person faces. We are all doing the best we can. I'm tired of spectating - or worse, being an inadvertent, unwilling contestant - in the Oppression Olympics.

(Image description: me in workwear - a white top with black collar, and black pants; me in pyjamas - blue top, blue floral pants, denim jacket.)

 

Eight ways to use Instagram to build a strong chronic illness community.

I recently wrote about my love for Instagram - sharing advice from Jadah Sellner and showcasing my favourite accounts. I mentioned how much I love using Instagram to connect with others who have Ichthyosis.

Instagram is an unlikely platform for forming a strong chronic illness community. I have 'met' lots of amazing people on Insta - even creating some great writing relationships (it's how I got to write the post for Jordy Lucas).

It's a great way to build a support network - so lovely to read comments when you're feeling down, and also to connect with others who understand what it's like to have a chronic illness or disability.

Danielle tells me:

"I use Instagram as part of my support system. It surprised me, but there is a great chronic illness community on Instagram. I've "met" some wonderfully encouraging people."

Find Danielle @choosing_hope.

And Michelle, who has been doing awesome fashion posts to show she's gotten dressed despite being so sick, said:

"Mine's a bit of a mix of my life, but the reality is chronic illness tends to make an appearance in some manner as it's with me 24/7. In some ways mine is a tangible reminder to me that I am living a good life, especially on the days when it is all too much."

Follow Michelle @Michelle_Roger

Here are eight ways to use Instagram to build a strong chronic illness community, plus more bloggers with chronic illnesses for you to follow.

Use Hashtags to find others in your community

I use hashtags to increase the searchability of my Instagram posts. (Hashtags are grouping tools - I wrote about them here.)

I always insert them in the comment below the post - I think too many hashtags clutter photo. I try to use relevant hashtags - occasionally using viral type ones (#quoteoftheday, #whatiwore #throwbackthursday).

Iconosquare has a great tool to see if the hashtags you're using are performing well, and suggests others you could use. (The Iconosquare optimisation tab (link above) also tells you which filters perform the best and when your audience is online)

I obviously use #Ichthyosis and this lets others with (or interested in) the condition find me. I regularly search this hashtag to find others affected too.

Recently I met a lovely lady from New York - also a blogger - who commented on my photo, saying she has Ichthyosis too.

We got chatting via email - it's been great! You can find her @AudreyAllure.

I've met lots of parents who post pics of their cute kids affected by the condition too.

Use illness hashtags on your photos and search for them on Instagram - see who you can connect with!

Reply to comments.

I'm not so great at replying to blog comments (sorry and thank you!) but I'm better at replying to Insta comments. I usually do this on public transport, replying to all new ones in one go. It's a great way to get a conversation happening and show you value your community. Last week I did a really silly post about what I was wearing (in my living room) to the AFL Brownlow medal, and I asked my followers what they were wearing. I posed in my pyjamas. The comments were great! Such a fun way to pass a Monday night.

When you build these relationships, it increases your credibility, and people will want to engage and get to know you. They might even visit your blog!

Do a photo challenge.

Ellyn, who blogs at I Need More Spoons, has dysautonomia. Her Instagram profile says the platform started out as a photo diary, but now she raises awareness of the condition.

October is Dysautonomia Awareness Month and she's created a photo a day challenge. So cool. She's asked others to take part, using #DysautonomiaPhotoChallenge. Each day has a different prompt.

As I drafted this blog on 2 October, 112 photos were tagged already!

Go Ellyn! Follow her @INeedMoreSpoons

If you start a photo challenge, you might want to collate the participants' photos into a collage at the end of the day/week/month and share it on Instagram, tagging the participants and thanking them. This will make them feel so special. (Use Diptic or Canva to create a collage.) Ellyn captured the faces from day one of her challenge in a collage.

Link back to your blog.

Emma who blogs at One Girl and the Sea told me she uses Instagram to share her blog posts.

Emma screen shots her latest blog post and writes a blurb below, her call to action is asking followers to visit the blog.

Find Emma @OneGirlAndTheSea

I ask followers to visit my blog too, but in a different way to Emma.

You can link to your latest blog post in your profile by editing your profile each time you do a new post.

I can't say instagram creates a lot of traffic to my blog, but I do have the occasional follower who clicks out of Instagram to read my blog and returns to Instagram to leave a comment. Hi @Lenkaland!

Share a story.

I mentioned above that Instagram doesn't drive much traffic to my blog. That's ok - I've got my blog for long form posts. What it is good for is to share bite sized snippets of my life - food, fashion, flowers and sunsets, mostly. Because Ichthyosis is such a visual condition, and because I like to be in control of how my appearance and condition is portrayed, I like to share photos of myself and blurbs from my blog. People who don't follow my blog can get an insight into what life with Ichthyosis is like, and often, a lively discussion ensues. During Ichthyosis Awareness Month I shared a few posts about the intricacies of my condition - fingerprints, the need to wear a hat for warmth and a trip to the hospital. Followers seemed to find these posts interesting and informative.

Jenna who blogs at My Missing Factor told me how she's shared a photo of herself infusing blood product.

"Most 'weirdly' Ive shared pictures of my self infusing blood product, which to the untrained eye may look like something else!

The post fared well! Obviously there was written context. It is a proud thing for me because this treatment is a long time coming, and vein access is a skill. Most people are impressed, or welcome me to the "factor club" if they infuse too!"

Find Jenna @mymissingfactor.

Use Instagram to pass the time or for an escape.

A few people with chronic illnesses told me they use Instagram to pass the time. It's a great thing to scroll through while in hospital waiting rooms (apart from the FOMO and #SoBlessed culture!).

Sara told me that for her, Instagram is a great escape.

"I think I probably use it mostly for escape, or release. I might see something that strikes a chord for some reason, it might emphasise the beauty that lies hidden all around us in very mundane things, or it might be a visual metaphor for how I'm feeling. I don't use Instagram a lot, and do use it for random things too, but that's the main thing. Probably. I travel a lot on trains, which can be hard when I'm not well, so I muse as a #reluctantcommuter... It keeps me company! :-)"

Take part in hashtag parties (or start one of your own).

Jadah Sellner called hashtag trends "hashtag parties". It's not literally a party, but it can be fun. It's joining a hashtag trend that someone else has created.

Recently, model and appearance activist Shaun D Ross started #InMySkinIWin.

Daily Life writes:

"After a mother of a child with albinism contacted Ross to see if he could offer any guidance for her young daughter, the model wanted to go beyond by helping others suffering from bullying and discrimination. And so he started a movement."

Of course, I loved this initiative and I jumped into this hashtag party, sharing my photo and a little story, and used relevant hashtags (below the photo).

My caption for the photo was:

I love the work of appearance activist and model @shaundross - he's started the movement #InMySkinIWin. Shaun says: "Beauty is you and what you make from your confidence in your own perfectly imperfect body. Together, if we encourage others to love what they see when they look at themselves, we can win in our skin." And here's me, winning in my skin. This picture was taken by Rick Guidotti from @positiveexposure last year - another appearance activist who captures the beauty in people with genetic medical conditions. When people tell me they wish there was a cure for Ichthyosis, or that I'm pretty, despite, or that they couldn't handle looking like me, I realise my strength. I shrug off the way the media portrays perfection. We win in our skin when we are comfortable enough to reject those standard beauty norms and celebrate our differences. We win in our skin when we tell people we are happy with our appearances and don't need to be fixed. ❤️

I guess I've started my own hashtag trend - #appearancediversity - I don't see many others using it though! Get on board :)

There are lots more photo challenges you can join in on - and they don't have to relate to your illness - but can raise awareness of it all the same. I love doing #EveryDayStyle - I wrote about my reasons here.

I really like the #hospitalchic hashtag party - showing off style in hospital.

Do a fundraiser for your illness community.

Camille from CurlyPops is the queen of Instagram fundraising - raising funds for The Heart and Lung Transplant Trust of Victoria and raising awareness of organ donation.

She always links to her fundraisers in her profile (see above tip!) and she shares fundraising tallies and photos of the events - showing great transparency. She also shows the importance of blood donation by taking photos of intragram infusions at hospital. Find her @curlypops.

I used Instagram to call for donations for baby Julius and show my followers that the medical items were received.

What are your tips? Got any awesome chronic illness or disability related Instagram accounts you'd recommend?

 

 

 

Life hacks for managing chronic illness and disabilities.

I have to be innovative to manage Ichthyosis.

My feet have been in excruciating pain. They went through their annual shed - the skin on the soles slowly came away. My brain worked and body moved but it hurt to walk. I'd been bathing them in saltwater and dressing them with antiseptic cream and Tubifast. The dressing needed some padding to protect my soles - and so I used some nursing pads.

And at work, my manager and I created a stool for me to elevate my legs under my desk. Two small bins stacked together, padded with some old legislation books to make them taller! Such a relief to put my feet up!

I asked friends how they are innovative with managing their conditions.

Rachel said:

I'm studying (via block courses) at the moment and sitting upright in a normal chair for a couple of consecutive days is impossible for me. So I take along my beanbag, which means I can recline and use my chair for a footstool! It works a treat and I cope so much better with this small accomodation. People have been so lovely about it, too.

Kerry told me:

"I'm allergic to light and heat so I freeze wet towels to wrap myself in to relieve the pain and intense itch. so cold, but so nice!"

Elizabeth said:

"I wear Skechers Go Walk 2 shoes, the extra thick flexible sole cushions my feet. That way I can walk a lot more but I really wish they were more attractive, like my shoes used to be. Then again, I should be grateful I can still walk, lol."

My old next-door neighbour Naomi said:

"Ohhh... my last workplace bought me an ottoman to put my feet up on. It was one of the nicest things that a boss ever did for me. These days I switch tasks to keep productive through as much of the day as possible. I work from home so I can work lying down if I need to and nap in my lunch breaks. I cook meals on the weekend and freeze them so I don't have to order out if I'm having a bad day. I'm slowly learning to just freaking rest if I'm overtired."

Maria, who has Ichthyosis loves support socks:

"Support socks are my help for my sore and weeping legs."

Alfie's mum Cat told me

"It's amazing what we find to help us when we need to! I used to be able to take a nap at work on my lunch break when I needed to, I had a quiet room I could go to and not disability related but I used a tampon to stop a nose bleed...didn't look attractive but stopped my nose bleed!!"

Jess joked that she uses her two tall, strong bodies for jobs!:

"I have learned to open jars by smashing the top of it on the bench and popping it off. I can't hold my arms up long enough to hang washing on the clothes line, so I use clothes horses instead. I hang all my wet washing on coat hangers and almost never have to iron."

What 'life-hacks' do you use to manage your illness or disability?

#abledpeoplesay

(Street art - Hosier Lane, Melbourne)

Yesterday morning on Twitter I came across the #abledpeoplesay meme. There were statements highlighting the ignorance around both physicial disabilities, invisible illness and depression. And I took part straight away, sharing the funny, stupid and insulting things people have said about my skin. Some of these things have been said to me years ago, others more recently. They're the sort of things that just stick, they made me laugh, and I remember them. It wasn't about me being bitter or not letting go. It was about me reflecting on and sharing the reality of how insensitive people can be.

Tweeting these was both humourous and cathartic. And it showed me and the Twittersphere just how intrusive able-bodied people can be towards people with disabilities.

Here are some of the actual things that able-bodied people have said to me. The. Actual. Things.

"You're looking almost 'normal' today."

"I don't even notice your condition anymore."

"I know exactly how it feels to have a severe skin condition; I have my eyebrows waxed monthly."

"Is there a cure for that? I couldn't handle looking like you."

"You want to be treated 'normally' but you still want to maintain your disability identity? I don't understand."

"They don't mean any harm when they ask questions about the way you look. They're just curious."

"Can you still have sex?"

"This is Carly. I've told you about her before. Do you think she's as red as you imagined?"

"Why do you put your photo online if you don't want it ridiculed? You have to expect the ridicule if you look different."

"It's so good that someone like you is out there and not locked away somewhere."

"I've seen Embarrassing Bodies. I know exactly what your condition is like."

"If I was in your situation I'd top myself."

"I will pray for you."

"Don't you wish there was a cure so you'd look a little less...unfortunate?" (Said via an email from an online dating suitor. He didn't get a date.)

"I wasn't sure how comfortable you were with being in a photograph."

"It's easy for you to criticise a diversity conference that lacked diverse speakers. You need to see the bigger picture."

"I don't understand why you only want to discuss your illness on your own terms. Strangers should be able to ask you questions."

"Change your appearance so you can be a little kinder on yourself."

"But dating is just as hard for a 'normal' person too."

"Here's the number of my naturopath."

"You look like that EVERY day?"

"You didn't tell me you were going to be THAT red!" (Said on a date.)

"Quick! Turn on the TV! There's a reality show featuring your condition."

"Is it contagious?"

"Stop scratching. The sound is really annoying me."

"There's always someone worse than you."

"God only gives challenges to those who are strong enough to handle them."

"When I first met you I was a bit shocked but now I realise you're normal and that."

"You've been a silly girl, letting yourself get so sunburnt." (Complete with waggling fingers.)

"What a shame."

"Will your children turn out like you?"

"There's no need to talk about sex around you. You'll never have sex" (Said at high school.)

"But you're not disabled like them."

"He/she must be very strong to be your partner." (This hasn't been said to be but to friends of mine.)

"Retard isn't an offensive word. I'm not talking about disabled people when I say it"

"My kids aren't scared of how you look, they're just shy." (This one makes me sad when I see kids covering their eyes in fear.)

"Oh but people are afraid of difference. They don't know how to react when they see you."

When it's all laid out bare like that I feel pretty proud to be so resilient. But I can't believe that people just say what they're thinking. Would they say those things to people without disabilities? My Twitter friends were disgusted and apologetic about what I tweeted.

I must qualify though: along with these things that have been said to me over the years, there have been so many more wonderful things said. Able-bodied people aren't all like those who have dropped these clangers. And people with disabilities have also said some pretty gobsmacking things to me too.

The things able-bodied people say show the attitudinal barriers that people with disabilities face. There is a gross sense of entitlement for strangers to know what's 'wrong' or to offer a platitude, because they really don't know what to say to someone with a disability. Education like this meme is a start in creating change.

A person tweeted me asking what's a good thing to say? I've written these two pieces that may be useful:

Tips for having a conversation for people with disabilities.

Preparing children for meeting someone with disabilities.

Check out the #abledpeoplesay meme on Twitter for more insights into things able people say.

And I'd love you to tell me what's been said to you.

 

Disability has meant finding my tribe.

 

While disability comes in different forms, I have found there's a collective sense of empathy in the disability community. Putting my condition in a box - ticking that box 'yes I have a disability' - has been more empowering than I imagined it could be.

I never identified with any words to describe my appearance when I was younger. The nicknames I was called hurt, and I wasn't disabled enough to go to a special school so I never had an affinity with the word disability. In the era and town I grew up, the definition of disability was either so severe you went to a special school, or you weren't disabled at all. I too had limited perceptions of disability.

When I first started mentoring young people with chronic illnesses, I was only a year older than the oldest members of the program. They talked about their experiences of having a chronic illness - things like constant hospital stays and appointments, time off school and a lack of understanding from their peers. I realised that these were my experiences too. We were different, we didn't have to talk about our conditions, but we just understood each other. It didn't matter that our conditions varied, we could learn from and support each others experiences. It was then, in 2008 I realised that I have a chronic illness. I always knew I did, but that was the first time I felt like I belonged in a group.

And then, when I was on No Limits, I'd listen to the stories from people with all types of disabilities. I'd nod and laugh, and sometimes tear up, because I just knew. I don't know what it's like to be in a wheelchair, but I do know what it's like to be asked intrusive questions.

Every time I mentored, or spoke on that TV panel, I had an epiphany and felt the greatest sense of empathy ever.

I'd found my tribe.

I went to Quippings on Saturday - it's a disability performance night. The theme was 'Piss On Pity'. I read out my piece on normal. Lots of people came up to me to tell me they enjoyed and/or identified with my words. The audience featured various disabilities and expressions of sexuality - everyone raging against the normal stereotype. It was brilliant. Kate Hood spoke of the patronising conversations she has with people who pry into why she's in a wheelchair. She mentioned how someone chased her down the street to give her a piece of paper featuring the number of a faith healer in Indonesia on it. It's happened to me too. Another performer, 'And Deathray', who has a variety of invisible disabilities, ranted that its so hard when she just doesn't fit neatly inside the box of disability. She's more than a wheelchair accessible sign. Why is she so sore today when she looked well yesterday. Again, I haven't experienced Fibromyalgia, but I've experienced the reactions she's received - the assumptions, advice and especially the sheer lack of understanding.

A person with Ichthyosis asked why I Identify with having a disability. She seemed surprised - she told me she doesn't believe she has a disability. Maybe she was surprised at me because of the negative connotations that the word disability has, or the assumption that disability is a limitation on mobility only? I told her that while I can do so many things, the disability surrounding my condition is external to me. It's the curiosity, attitudes, reservation and hesitation towards my skin, and occasional harassment - all from other people. These experiences are what my friends with disabilities face too. We are all different but so much of us is the same through our collective empathy.

Disability is a little bit about what I can't do, a little about the discrimination and attitudes I face and yet so much about what I can do. I don't want to diminish the harsh and often sad reality of disability. But I - and so many of my friends with disabilities - see the word and the condition in a positive light.

Since I've identified with having a chronic illness and a disability, my life has become enriched. I've met great people and done so many things that I may have missed out on if I'd dwelled on the negative connotations and assumptions around disability.

For me, disability is pride. it's individualism and not giving a fuck about non conformity. Disability is showing them - the underestimators. It's a sense of community. It's friendship and a strong sense of empathy with a big dose of laughing at the ignorance of others' reactions. Disability is a place to belong. It's finding my tribe.

Today is International Day of People with Disability. I've done a couple of interviews - one for 3CR radio and another for ABC Online. You can see what events are happening near you on the IDPwD website.

 

Appearance diversity: Living Without Skin - Life with Epidermolysis Bullosa.

I first met Nikki online when she read my blog back in 2011. I think she left me a comment and I contacted her by Facebook. Nikki has a rare, extremely severe skin condition called Epidermolysis Bullosa (EB). Her condition is evidence of just how much skin affects the body's functions - her skin is raw and she's in pain a lot of the time. I can't imagine the pain she's in. The condition can be fatal, and in the time I've known Nikki, she's lost two close friends to EB, and been on the intensive care ward in hospital twice. It must be really hard to lose friends to the same condition you have while you're going through a life threatening experience.

I asked Nikki to tell her story for the appearance diversity series - and she has timed it well because today is the start of EB Awareness Week which runs from 25 - 31 October.

"Skin. The largest organ of the human body. Your body's first line of defence against injury, bacteria and infection from the outside world. The organ that everyone takes for granted...

Well I don't...

My name is Nikki and I'm 27 yrs old. I was born with Epidermolysis Bullosa or EB for short. EB is a genetic skin disorder where by the skin is so fragile that it blisters and tears at the slightest touch. An easy way to imagine it is that our skin is as fragile as a butterfly's wings (which is why EB children are often called Butterfly Children).

EB has been likened to having 2nd degree burns all over the body, except for one difference, while burns eventually heal, EB wounds are constantly coming and going. I have open wounds on most of my body and am therefore wrapped in bandages from head to toe every day of my life.

Daily life with EB can be very painful. Every day I must have my dressings changed which is a long, painful and stressful process to say the least. This involves taking off all the old bandages which can sometimes be stuck, washing the open wounds and then having new dressings applied. This process can take up to 2-4 hours. It is safe to say this is the worst time of day for children and adults with EB. You can always tell when it's getting to 'that time' of day on a person with EB because a little anxious furrow line will appear across their brow. No matter how much of a good day you are having there is always that knowledge in the back of your head that bath time is just around the corner.

(Nikki with Richard Dawkins)

When things are running smoothly I have a 3 monthly EB clinic at the hospital for a full body check for SCC's (Squamous Cell Carcinoma). I am also seen by every medical discipline all in one day as EB can affect every part of the body. I also have monthly renal clinics since having kidney failure.

My subtype of EB can be life threatening as we have about a 50% increased risk of SCC which is a very aggressive skin cancer. There is also the constant risk of infection as well.

While EB may not directly affect other organs, years of constant infections and inflammation can cause damage to other organs such as the kidneys. I have been unlucky enough to have this happen and am now on dialysis. If I have a kidney transplant I will be probably be the first EB person ever to have one which is both scary and....scary. Whether or not I would survive it...that's a whole other question.

Along with the physical pain, comes the emotional pain from constant stares and whispers of strangers. Then there's the innocent but no less hurtful comments from little kids like "Look at that girl!?, Yuck that girl's dirty!" I know they are just curious but well, kids can be cruel sometimes.

Sometimes people can mistakenly believe that EB is contagious but this is definitely not the case. EB is a genetic condition so you can hug me all you want and you won't catch anything! As long as you hug gently though!

I can go out but since I use a wheelchair mobility can be quite an issue. I usually go out with my family and friends to lunch or dinner or have my friends over to my house. During the summer though I tend to stay inside in the air conditioning as I get extremely hot with all my bandages on and cannot control my body temperature.

I studied up till yr 12 and then did 3 years of TAFE studying various Multimedia/IT/Graphic Design courses. After that my health declined and I have not studied any further, however I did teach myself Web Design and HTML and have done a bit of freelance work here and there. Things I enjoy doing to take my mind off EB include having good food with friends, Movies and DVD marathons, cryptic crosswords, building Lego, trying and failing to draw and most recently jigsaws!

I must admit its hard to stay resilient and there are often times I just want to give up. But I can't let that happen so I have to try my best to pick myself up and keep positive.

(Nikki with The Cranberries)

This week is EB awareness week and I want to use this post to educate and bring about awareness of EB to the public. For any parents reading this, teach your kids that if they come across someone with a physical difference like EB that there is nothing to be afraid of and we are just like them.

Currently there is no cure for EB and treatment is mainly based on the provision of very expensive dressings. While these dressings are funded under a very generous scheme from the Government, the EB support charity DEBRA Australia is non-government funded and relies solely on donations from the general public.

Since I was born DEBRA have been a great support to me and the EB community not only providing dressings and other medical equipment, installing air conditioners, but by offering a close knit community of other family members to share stories, tips and advice.

If you would like to help spread awareness and provide dressings and medical equipment for children and adults with EB please follow this link to DEBRA to donate. Your donation WILL make a difference as every little bit counts!"

Read Nikki's blog.

Follow Nikki on Twitter.

Read about Nikki in a Sydney Morning Herald article for Rare Disease Day.

Watch Nikki on ABC's 730.

Keep up to date with DEBRA on Facebook.

For more information about organ donation - so that one day Nikki might get her kidney transplant, visit Donate Life.

 

Things I haven't told you about my Ichthyosis.

I was chatting to Pip Lincolne and Alex Brooks (from Kidspot) at the world's best breakfast buffet (QT hotel on the Gold Coast) and somehow the conversation came to the funny things that happen because of my Ichthyosis. I think it was because I couldn't open a bottle or something - I had to ask someone to do it. Alex and Pip asked me what other funny things happen, I mentioned a few, and they wanted to see a blog posts with the real facts about Ichthyosis. So here are the things I haven't told you (aka the things that make me laugh).

1. I can't really open jars or bottles. I'm too slippery. I do have a jar opener which helps a lot. Sometimes I have great trouble opening a wine bottle and I need to pop down to my neighbours to ask them to open it. Usually I am in my pyjamas. Last month none of then neighbours in my block of flats were home and so I popped across the road, in my pyjamas, to ask a neighbour I'd never met before to open the bottle of wine. "Hi, my name is Carly, I live across the road and I'd really like you to help me open this wine please." It makes for a good introduction.

2. I may give a boy pash rash if he is prone to acne. Years ago, mum asked why the boy I'd been kissing's face had so much of my cream on it. He also broke out in acne. We were 18, ok.

3. My finger prints don't work. I had a difficult time scanning my finger prints at LAX (and an equally as difficult time maintaining patience after a long haul flight, being questioned by the Customs officer and my fingerprints not working on the scanner. "Just scan my retinas", I suggested.) I also have trouble with the biometric thumb drive that I use in my day job. I needed to get it changed to a password lock rather than a thumb print lock. I think it's because the skin peels off. Other people with Ichthyosis have said they also have trouble with finger print scans. And don't even get me started on the bomb squad at LAX.

4. Skin renewal leads to a breast lift. My skin renews very fast - while this sounds a little gross, it forms big patches over my body through the day and night, and the can get a little uncomfortable until I wash it off in the shower. Sometimes, when I take my bra off at the end of the day, my boobs are just a little perkier - they're being supported by that extra layer of skin. Ha!

5. You can tell when I get embarrassed, get a fright or tell a lie. I go white. The colour drains from my face - it's really obvious that I'm embarrassed, frightened or lying. One time when I worked at the department store, there was a thief, and I was asked - over the phone - to keep an eye on him in my department until the police came. A customer asked me if I was ok, he could see I'd gone white - and while I said yes, my face said otherwise. "Is there a thief in the store?", he asked. "No", I told him, but my face screamed yes!

6. I have little to no body hair. There's a tiny amount of hair on my legs - like less than half a centimetre - and when I was 13 and not supposed to be reading Dolly Magazine, I stole a new razor out of my Dad's collection in the bathroom and shaved this tiny bit off. It didn't hurt me, but there was really no need. And there's no body hair anywhere else. This is money saving and painless and I have avoided a beautician looking at my vagina. My friends have tried to explain what happens during a Brazilian wax, and I cant even. Related: I don't ever need a spray tan. I would really like some eyelashes though. Eyelashes are my dream body part.

7. Sleep heals. And pales my skin. I was quite sore recently and had the day off my day job to get some rest. Sleep really does help. My body felt far less sore (the throbbing had subsided) after a three hour sleep, and my face was very clear, paler even. Here's an image of my face that you'll rarely see. Bed head! (Note: there is an Instagram filter on that photo but it was the one that best matched the colour of my skin in the daylight own that day.)

There's always a funny side to this condition. And some positives too! Rachel and Jennifer over at Confetti Skin also wrote about the nice things about Ichthyosis recently.

What strange/funny/interesting things happen to your body because of your chronic illness or disability?

Do you have any superhero skills because of your chronic illness or disability?

 

On unwanted prayer and pity (or misplaced good intentions).

I'm on holidays. A staycation now and a short vacation tomorrow. It's been nice - I've done some writing and pitching, some travel planning, some cleaning, and some napping. I've also been trying to exercise regularly - going for walks and doing squats and sit-ups. I walked to the post office and back yesterday - it's around a kilometre, and including talking to three friends and waiting in the queue at the post office, it was a 45 minute round trip. In that time, one man slowed down to a stop to have a look at me, and a lady pushing a little vinyl-covered trolley stopped me to offer me a pamphlet titled 'A prayer to stop your suffering'. I smiled at the lady, politely refusing her offer and walked on. I also waved on the man, telling him to keep driving, that there's no need to stare.

These incidents, while occasional, don't upset me. However I do take issue at people forcing their religious beliefs onto me, with no background knowledge of my condition. There's no cure, and I don't need a 'better' life, thanks. (I have written about why I am not religious previously - this has a lot to do with how religious people have treated me over the years. I understand that some of my readers may be religious, and some people do ask for prayer in times of need, and I respect that.) Friends - with Ichthyosis and with other conditions - have told me they've experienced similar - unwanted healing hands, advice about faith healers and being made to feel guilty for being human.

Good intentions can be rude and presumptuous. I hate that people think my life must be so bad that I need prayer and pity from strangers. I hate that the prayers they offer may be attached to a sense of personal guilt about feeling uncomfortable around me. Especially when I'm clearly not suffering, I am just going about my day doing the things that they're doing too.

I get the sense that strangers believe we need to be granted forgiveness from past sins, to be healed of an infliction that is seen to be grotesque, and a great condescension - just like a pat on the head, or an "it's so good to see someone like you out and about" comment. I also think that a lot of what people say to us is because they're pushing their own insecurities onto someone else.

I feel there's an expectation that because of such misplaced good intentions, and especially because the religious aspect of the situation, that I will be polite. Because religion is associated with kindness and charity. And so I am polite - I just walk on and smile. But these misplaced good intentions - sheer pity - are rude, intrusive and condescending.

I would much rather the people who offer healing prayers put their good intentions to good use and physically help people in need - maybe working at a soup kitchen, volunteering in a hospital or donating food, toys and clothes to a charity organisation for distribution in the community.

(Source)

 

Of course with every pitying person comes many, many polite people. I'd much rather a person say hello and smile than clumsily showing me their misplaced good intentions. My life is no less without religion or unwanted prayer and pity, just as it's no less with Ichthyosis.

(The Matter with Megan has written a much more articulate post about being prayed to, to cure her of her rare skin condition - you should read it!)

(And yes, the situation in that video has actually happened - numerous times - only in reverse. Ridiculous isn't it?)

 

Zac and Mia by AJ Betts: friendship formed on the hospital ward - Interview with the author and a giveaway.

A few weeks ago I listened to a Life Matters podcast that featured an interview with young adult fiction author Amanda (AJ) Betts. She spoke to Natasha Mitchell about her latest release, Zac and Mia. AJ Betts is an author and a teacher on a hospital ward in Perth. The book is about the strong bond between two young people, Zac and Mia, who meet in the oncology ward. I had to read this book! When I bought it, I read it in two sittings. And I loved it. It's beautifully written and features believable characters. I wanted Zac to be my friend.

Zac and Mia resonated with me so much because I have spent lots of time in the Royal Children's Hospital in Melbourne as a baby and child, and then in the Albury Base Hospital as a young adult. I made friends for life in both hospitals (particularly in Albury), went to school at both hospitals, and became an empowered patient due to interest I took in my condition and in the relationships I developed with my doctors. I go to the Royal Melbourne Hospital now, and the head dermatologist is the one I've seen since I was six. I'm now a bit of a teacher-patient, working with my dermatology team to deliver lectures to doctors at the hospital and also in the medical program at a university. I also used to mentor young people in the Chronic Illness Peer Support program at the Royal Children's Hospital from 2008-2011, and the friendship Zac and Mia formed reminded me a lot of the friendships among young people I mentored.

As I read this book, I thought of the great friends I'd made in hospital - especially the Jones family who I love dearly. Hospital can be a lonely place, and often patients are coming to terms with a big change in their lives, and so it's nice to find friends who already know what this situation is like. A lot of the time when I was in primary school, I wanted to stay in hospital because kids treated me better in there. I also thought of the maturity that young people with chronic illnesses need to develop, and the way peers with chronic illnesses just get it.

Thank you so much for writing this book, Amanda - it's meant so much to me.

I got in touch with Amanda for an interview. The book has stuck with me a week after reading it, and so my questions to her were so involved. I wanted to know about Zac and Mia from the author's point of view. Her answers as as beautiful as the writing in her book.

Carly: Tell me a little about the book in your own words.

Amanda: "Zac and Mia is a story of two teenagers whose lives are altered because of treatment for cancer. They develop an unpredictable friendship that is tested in the real world."

Tell me about your role as a hospital teacher. (I had the BEST teacher in the Royal Children's - I wish I was still in touch with her).

"My role is to provide an educational service for teenagers who unable to attend school for health reasons. I liaise with their enrolled school and teach the students one-to-one, ensuring they keep up to date so they can transition back to school when they're well enough. I've been working there for eight years.

The book shows how young people mature so much because of a chronic or terminal illness, and trivial things like split ends or parties don't matter so much. I could absolutely relate to this. Tell me a little about Zac and Mia's need to mature quickly, and especially the change in Mia.

As you know, the hospital world is completely different to a typical adolescent environment, such as a school. The things that define you in school - peer groups, academic success, hobbies, appearance, etc - don't carry across into hospital. Suddenly you're without your friends and the structure of school, and even your appearance is changing. Then there's the prospect of serious illness, pain, sacrifice and mortality to contend with. Teenagers, unfortunately, have their world view pulled out from under them and they're forced to reconsider what's really important. Mia tries to maintain the illusion of perfection, which exhausts and unsettles her. She has to confront what many people don't really grasp until their thirties, or older: that it doesn't matter how people judge her; that real friends will support her; and that beauty is tied up with imperfection, vulnerability and love."

I loved Zac's friendship with Cam - the age gap was significant. Do you think that certain relationships come by because of illness? I think the people you meet is one of the silver linings of illness.

"I've noticed that age gaps sometimes disappear in the hospital setting. Cam is a really genuine guy who connects with Zac. The situation allows an individual's qualities to take prominence over the obvious differentiations of age, class or gender. They're all on a level playing field in hospital."

Technology has changed since I was in hospital as a young person. I'd meet people in the ward and communicate with them by letter and sometimes phone. If they lived close by I'd meet them once a year (my family still makes a 1.5 hour trip to a family I met in hospital in 1989 every Boxing Day). Now young people have social media to connect. How important do you think this instant communication is when stuck in hospital?

"Social media has the benefit of being immediate, eg Zac can update his status and receive sixty comments in an hour. But there's the flip side to this: instant communication is reflexive and not necessarily meaningful. After each barrage of online comments, Zac feels inevitably lonely. The most meaningful communication he has is with others in hospital, as only they can fully appreciate the reality of the situation."

The Internet has also meant that patients are a lot more educated (and connected) about their illnesses. Zac was rattling off a lot of stats about cancer (well done on your research!). Do you think the instant and vast way of patients can research their illness means they may become more more scared about the diagnosis. There's also the power of blogging and sharing stories (which of course, I am a strong advocate of). Did Zac blog? Do you think him reading blogs and forums late at night was just as powerful as him blogging? (I loved the blogging reference.)

"Thanks! The Internet becomes Zac's forbidden secret. While it's useful for Zac to educate himself, he becomes too fixated (I think) on stats and figures. There's a risk of placing too much importance on these when, as Mia says later, every case is unique. The Internet can also be a minefield for anyone trying to research/diagnose an illness, and it can certainly incite fear. I found the blogs to be helpful, both for my research but also as a resource for Zac and Mia. Blogs make each case unique and often provide helpful tips for support. Zac didn't blog - he's an avoider, though of a different kind to Mia - though he does take great comfort from reading them. It's the only time he lets himself connect to his own emotions. He finds the blogs heartbreaking, as I did when I read many online."

Why did you write the book? It's such a valuable story - where do you hope it goes? I think it could also give young people without illnesses a great insight into what it's like to have one, and maybe make them think about how they treat people who are doing it tough. Are you glad it's touching more than just the demographic of the Zac and Mia?

"I hope that all readers can connect with the story. Illness isn't the main focus of the book - it's the catalyst for bringing them together and a motivator behind some decisions. The focus is on two individuals trying to work out what's best for them, and I think people of all backgrounds are responding to these characters.

I wrote the book because I wanted to try a 'romance' of sorts. I chose the hospital setting because it's familiar to me and I'm inspired by the incredible teenagers I've known over the years. I admire their courage, humour and compassion, and I believe we can all benefit from seeing the world through their perspective, even if it's just for a day."

AJ Betts' publisher, Text Publishing, has given me a signed copy of the book away for one of you readers.

To win, comment below telling me about an unlikely place you've struck up a friendship.

Entries close at 5.00 pm Tuesday 20 August. Please leave a valid email address if you aren't logging in with a Google account or linking back to your blog. This means I can contact you if you win!

Good luck!

If you're not a winner, you can purchase the book from Text Publishing.

 

Meeting Valerie and Stephane - also affected by Ichthyosis.

On Monday I wrote how blogging builds and strengthens communities. My blog brings people together. I've come into contact with many people with, or parents of children with Ichthyosis through writing here. Last year while overseas I met Jack and his parents, and also DeDe. I also keep in contact with many people affected by Ichthyosis online. The Ichthyosis Awareness Month blog project brought lots of new people into my life and I think it definitely strengthened communities.

Over the weekend I met two new friends - Valerie and Stephane - from New Zealand via Mauritius. You may remember Valerie's story from Ichthyosis Awareness Month. They happened to be in Melbourne at the same time (Val lives in New Zealand after moving from Mauritius, and Steph still lives in Mauritius). They were both so warm and friendly, and it's as though we've been friends all our life.

(Coincidentally, on the same day as I met Val and Steph, Courtney, Evan Connor and Brenna met Steph, Curt and Willie all the way across the world in Arkansas.

(source)

Courtney also described meeting Steph as having a deep connection because of shared experiences. I'm sure the meeting gave Courtney so much hope for Brenna.)

Valerie and Stephane are siblings - they have a close relationship. Valerie said they really understand each other. Both are affected by Netherton's Syndrome - the same form of Ichthyosis I have. I could definitely see similarities in us all - both visually and in our discussions about our experiences.

We chatted for two hours together on the train and over brunch - we've all experienced difficulties with our hair breaking, our eyes get stringy, we get very cold (like me, Val wore four layers that day!), and our skin is the same level of redness. They both use different treatments than me - a fatty acid and glycerol, and they've been trialling some eye drops that reduce redness on their face. We have, of course, also experienced societal difficulties - the staring, insults and the ignorance. I was telling them a little about how I have an autopilot response of "I was born like this" and rarely get angry, unless it's warranted. I think this advice helped both of them a little. We all agreed that countless questions and staring is tiring, no matter the best of intentions.

Steph was returning to Mauritius that afternoon and so I dropped him at the airport. Afterwards, Val and I went for a bit of shopping, and boy did she shop! She's got a thing for turquoise - which suits her so well :) Also, Val has great hair! And they both have beautiful eyelashes which I joked that I was envious of!

The time spent with them was not limited to discussing Ichthyosis, but it was hard not to given it's the reason we met. We are all around the same age - Steph is 28 and Val is 35 - so we've experienced growing up in the same era. However, they told me it's very hard to cope with Ichthyosis in Mauritius - people don't hold back with staring and commenting (cultural ignorance and fear, perhaps?), and I expect the climate would be difficult. we talked about pain - we all agreed that the physical pain of Ichthyosis is so hard to describe. I felt it really great to articulate our shared experiences together. Steph in particular was impressed by my confidence and very thankful for me telling my story and he said that watching my 'It Gets Better' video gave him a little hope for himself. We agreed that connecting online gives people affected by Ichthyosis more hope than what we had growing up.

Years ago I was hesitant about meeting anyone with this condition. Maybe it was because of my experience with online support groups (especially the illness one-upmanship). Or maybe it was because, at dermatology conferences, I'd meet people who were forever looking for cures and pushed that expectation onto me too. Or I was scared that I didn't have all the answers about how a child may grow up for a new parent. I've learnt to let those worries go. Since I've been blogging, getting to know people through their comments and on Facebook - not just discussing Ichthyosis but showcasing our wider lives - I've been more open to it. When meeting Val and Steph (and also Jack, Julie and Danny, DeDe, and Jeff a few years ago), there was no one-upmanship, no competition of who has it worse, and friendly sharing of information about treatment rather than cure pushing. Above all, there was a great sense of knowing. I came away from our meeting on the weekend so uplifted!

When we said goodbye, we agreed to stay in touch. I'm planning on a stopover in New Zeland next year before I reach America, so I'll definitely be meeting up with Val and hopefully Steph will be there too.

Maybe it was because we were so engrossed in conversation or excited to see eachother, but I didn't notice any stares in our direction. At one point, while on the train, I was relaying a story of a tantruming child telling me he didn't want to look at my face, and so I gave his father my card - suggesting he may to read my blog post about teaching kids about visible difference, and a fellow commuter piped up to tell us what a great story that was! I guess she could see that we all faced the same issues. Being with Valerie and Stephane was like spending time with people of my own culture. Maybe having a visible difference is a culture of its own - where we can all identify with similar experiences, and all belong. We all just know what it's like. We know we're not alone. And that's a relief.