Ichthyosis...HELP!

Thank you Carly for writing this. I'd like to pride myself and my family for what we do in our lives. Yes, we are affected by Harlequin Ichthyosis. But our story doesn't stop there. Last year, and I'm sure I will repost anyway, I went through two of the most horrific experiences in a long time. And that was because I have HI. Raising awareness is everything. Please read Carly's piece here.

 But don't just let it stop at a skin disorder. Look at the outer box. Look at people with a visible  difference and their job success rate. I am lucky that I work in an inclusive office. But I know that not everyone is as blessed as me. I may have a skin disorder but upstairs, I'm just me. A regular human being with a penchant for rugby activities and doing completely inappropriate things at the wrong time. What people and employers should ideally understand, is that we are just as capable as the person next to us. True story.

 I work at an NGO as a teacher for people with special needs. And my mum found me that job when I was 18. 5 years later, I am now in charge of creative digital media like photography and video production. I am also a co-coordinator for International Service Development, effectively communicating with clients to promote our work. This job is hard. And I can sometimes be found in the office on a Saturday catching up. And my phone is how I answer emails from everyone work related. Not easy. But with the support of colleagues, I have made a mark. And guess what? No one realizes on the phone that I have Ichthyosis. Its only when I meet them in person and even then, I am welcomed.
 
Sharing photos and information is a vital tool in our world. But like Carly, i try to exercise caution. I am aware of what I share, will not always be met with grace and praise. I am aware that no everyone will be thrilled to see photos of feet and raw bloody skin. If you are unsure of what on earth is happening, its cool to post questions, but post the photos to people through their inbox…if they want to see. Oversharing has been a massive learning curve for me. And for me and my life, I only share what I want others to see. I have plenty of things I really don’t need the world to know or see. Its all about your own privacy.

Last year, and I’m sure FB will remind me eventually, I had a pretty horrific time with Bus Discrimination and shock videos. It was absolutely horrible to deal with and it was amazing how so many people came together to support my family through it all. BUT...and I say this with absolute caution…

People with visible differences or special needs will sadly be a target for trolls. I was surrounded by so many wonderful people who offered their love and support, both privately and publicly during that time. BUT, I know that not everyone has access to that. Organisations who advocate for us, should understand that when YOU are the targeted party, you feel utterly helpless and devastated that you’ve been reminded of your differences. YOU deserve the best support available. There is no point in simply saying that you’ve reported the incident and waiting on an action. Because it doesn’t help you emotionally, you are basically, screwed.
It makes all the difference to even receive a private inbox message, just checking in and asking how you are holding up. 

And I wish that organisations would recognise that if you are to help through some horrible experience, personalization makes all the difference.

I absolutely stand by what Carly says when she hopes that organizations that support us should look at the bigger picture. We are not simply looking at a skin disorder. Oh no. As you may have seen with our Facebook page, The Girl Behind The Face, we look at the bigger picture. We look at how our lives are affected.  Ichthyosis is not only about pouring money into research, which saddens me, because I know that it will take a while before much headway is made into a cure. Ichthyosis is life, its dealing with daily life, it’s dealing with bullying, job prospects, the whole shebang. So if we could get more life skills from the organizations, that would be amazing, it embraces everyone, better than trying to suggest things that not everyone in the world has access to.

 People have been living with Ichthyosis and visible difference for a long time. Granted, I’m not the most clued up because I’ve tended to focus what’s in front of me. But, you look around the internet and you see that adults have come before us with Ichthyosis, bringing with them a whole wealth of knowledge. Granted, if anyone asks me, go to our Facebook, it’s much more informative than I will ever be J. So anyone who reads this, utilize people who have been through it all before, it’s a lot more informative than Wikipedia will ever be.
 I have, in this day and age, been inclined to approach others in my network for advice on managing my skin condition. I trust their judgement because it is tried and tested. And I have also learnt, what works for one, may not work for someone else.

 Having grown up within the enclaves of a diverse Hong Kong (China by the way), I have been afforded so many opportunities by so many. Whilst I have a day job, I also terrify myself sometimes with the fact that I literally don’t slow down. With refereeing duties, events, sail volunteering, along with helping to raise our profile in the world, I really don’t stop. But what I have, is a result of networking, which not everyone has access to. And for organizations to provide links and networking, hopefully people will be more confident in presenting themselves out to the world.

 I have been involved in enough rugby events to know that I am in a community that accepts people, no matter what they are facing, be it a disability or something else. I have been afforded some brilliant opportunities by way of the fact that organizers and the head of referees realise that yes, I have a medical condition, but that doesn’t stop me from being involved in such a great game. My mind is completely on the ball, hence why I have been able to be involved in premiership scoring and sin bin documentation.

 As my refereeing hero Nigel Owens has said many a time,
"Rugby is without a doubt the greatest team sport on the pitch, but without a doubt, the greatest team sport off it as well".

Just because I have been afforded brilliant opportunities, it is my hope that more and more people will have just the same or even better experiences than myself. And if Ichthyosis Awareness Month can help others gain more confidence, awesome!