IT'S ICHTHYOSIS AWARENESS MONTH!

It's May, you  know what that means, ichthyosis awareness month! And mental health awareness month as well so hoping you're doing great and spreading as much awareness as you can to not make talking about mental health a stigma and it's okay even if you didn't or don't because really, being sane right now is more important. Though, you guys must be wondering why these "awareness" months exist, right? No problemo, I got you guys. So, awareness months are usually months that are dedicated to certain issues and conditions to talk about it and normalize talking about them. During these months people of that particular community come together along with their friends and family to disseminate about the condition/conditions, provide information and educate people about it and also shed light on the challenges they have to face.

 As I said before May is ichthyosis awareness month and I thought why not I talk to people in my life and even strangers for that matter. So, what I did is I asked my people a few questions like do you know any type of skin conditions (to you know start the conversation but it's still very abrupt so yeah whatever), okay yeah next question was ; do you know what ichthyosis is, how would you treat a person with the condition, would you be judgemental or would you merely be curious as to why they look the way they do and finally would you just go and ask them and feed your curiosity?

 So, for starters the responses I got ranged from being uber irrational but then again I asked for honest answers *cringes*, to being uber unexpected in a good way. The sole uber irrational answer was actually an expression that now annoys me to no end, even though it was in a way uncalled for and I literally can rant on it for hours to go though let's not go there, shall we? Alright, so, the genuinely understanding and nice responses were from my friends' family since omegle (a website to chat on video calls or texts with strangers, i know brave of me) was being a pain and I couldn't find it in myself to chat with strangers who did not give me the time of the day :')

Anyways so, one of my friends asked her mom and her mom was a bit hesitant in the beginning because obviously she doesn't know me that well and doesn't want to hurt anyone I suppose. All in all, what she exactly said and meant was that she'd have no problem educating herself about something she doesn't know and won't cross the line just because she was curious about the way someone looked. She wouldn't go out of her way to ask a stranger why they look the way they do, because firstly they don't owe her anything and secondly it's rude. Plain and simple.Another one asked his younger brother and god was I taken aback. Everything he said from the hesitance he'll feel to sit around someone like me to eventually giving in and giving them a "chance" because it's not their fault AND they're humans as well after all, was what I've had to experience most of my life. Calling us names and giving us adjectives that are simply not nice is very close to discrimination if not exactly that and hence informing people regarding such genetic conditions like ichthyosis is also necessary. A lot of people even shared their experiences of being bullied and teased because of zits, acne scars and any other things that affected their skin/face. They shared how people would come up to them and randomly start blabbering about supposed "solutions" they had and unintentionally striking a nerve because they already know the scar is there it's not necessary to point them out.

And obviously, since it's ichthyosis awareness month (count how many times I said that lol) I had to talk to fellow survivors, hear about their experiences, take some advice and everything. 

One such survivor is Carly Findlay, who lives in Melbourne, Australia. Her journey to her true diagnosis was rather a long one since, at birth it was Ichthyosis form Erythroderma which later changed to Netherton's Syndrome after she and her parents took a genetic test when she was 10. She grew up in a very small town, about half an hour from a rural city. The summers there usually got very hot, often over 40 degrees Celsius as her skin couldn't regulate the temperature, she struggled with heat and also with the bullies. Her parents were migrants – her mum was South African and dad, English which led to some people in her town that her parents had sinned and that’s why she ended up with Ichthyosis. There were other things said about her as well – name calling like “Red skin” and “Skinner”; children were afraid to sit next to her, play with her and she was excluded a lot.  While her home life was good, she didn’t exactly have a good time at primary school and things didn’t change much when she went to high school. She was a good student, though. English and history were her favourites, and enjoyed writing a lot! Things changed when she got a job at the departmental store during high school years. The job taught her how to answer questions about her skin professionally.  It also allowed Carly to make true friends for the first time in her life. She then went on to university to study Bachelors in eCommerce, where she made even more friends that lasted till date! The maturity and professionalism that comes with getting a job and going to university really helped her improve. And further moved to Melbourne at 21, to escape the small towns!

It took her a long time to be ok with her skin. She felt different, isolated and like she needed to change – the lack of representation of Ichthyosis in media did not help. And then it took meeting others with Ichthyosis, as well as different disabilities and chronic illnesses, for her to be ok with being called disabled and chronically, and to do the work she does. She sees herself as a writer, speaker, arts worker, appearance activist through which she discovered disability pride, and that it is a lot easier to love myself than to hate and want change. To name a few of her achievements, she has written on living with Ichthyosis as well as other disability and appearance related topics for major media companies like the ABC, SBS, The Age, CNN and Vogue and has even spoken at venues and events including the Sydney Opera House, Melbourne Writers Festival, Ubud Writers and Readers Festival, the University of Western England, Sydney Writers Festival and more. She has also organised a fashion event for disabled people, and a meet for people with ichthyosis. She has written a memoir called Say Hello about her life, and has lots of tips on how to develop confidence when you have a skin condition or disability; and tips for people who might not be sure what to say to people like her.

 When asked if she went through any type of discrimination while applying to jobs or while simply doing her work, she answered, "I have definitely experienced discrimination when applying for jobs, particularly within the APS but it was never visibly obvious. Once I got feedback that I didn’t get a communications job because I couldn’t demonstrate I could write for a large audience even through I was writing for the national media at the time! Working in the arts, and for myself, has made it a lot easier for me to get work now. Having a public profile probably helps too – though I do get a lot of requests to work for free (which does not pay the bills)."

In 2020, among her various achievements, she was also awarded an Order of Australia Medal for her work in writing and disability activism. This position is very honourable to her and does not take it even the slightest bit lightly. She also aims to amplify voices that aren’t often heard, bring people together, and educate people about facial difference, skin conditions and disability through positive representation in the media. To the hypothetical situation of her not having Ichthyosis in an alternate universe, she replied, "I wouldn’t change who I am though I would like to get rid of the pain I experience because of Ichthyosis. I am visible on social media and in the mainstream media so that young people with Ichthyosis can see what’s possible for them. It is amazing to reach so many people with ichthyosis, skin conditions, facial differences and other disabilities, and also helping shape the way allies view disability. If I didn’t have Ichthyosis, I  would still want to be a writer – but I bet that career wouldn’t be as fulfilling as I have now."

 Outside of work, she enjoys travelling (she can’t wait to go overseas again, though travel within Australia is pretty great too!) reading, cooking and eating, spending time with friends, fashion and learning to rollerskate are also included in her hobbies!

 To end this, all I want to say is people with a certain disability or illness or a skin condition are no different than a "normal" human being. Treating somebody poorly just because they're different irrespective of anything, using ableist slurs, etc. add more to the problem of discrimination. Lastly, I don't really have a specific hack or tip except for the usual "moisturize and stay hydrated" people with ichthyosis get though you can check out Carly's latest blog regarding this!

 

An instagram live regarding ichthyosis : https://www.instagram.com/p/CPWLv0UHfOE/

Carly's memoir, Say Hello : http://carlyfindlay.com.au/sayhello

A video of Carly and her mum's conversation about her growing up:

https://www.youtube.com/watch?v=pClRxbjzGI4

Carly's blog: www.Carlyfindlay.com.au

Facebook: http://Facebook.com/tune.into.radio.carly

Instagram: http://www.instagram.com/carlyfindlay

Twitter: http://www.Twitter.com/carlyfindlay

Stay safe, stay swag, dorks! ToOdLeS! :))