Media Frenzy

I thought this would be an interesting issue to write a blog about, as it’s something that’s been on my mind on a regular basis, not in the sense that I dwell on it, but just something that springs to mind now and again. Mainly when I see a feature in the media.

Several times now I have been approached by journalists asking if I’d like to share my story of living with Ichthyosis. There was once a time when I wouldn’t have hesitated, and I have already shared my story several times in the local newpapers, even a national women’s magazine. However, from the experiences I’ve had from sharing my story with such publications, I have learnt a lot about how the media works in both a positive and a negative way.

The way my story was written in these publications in the past was only an interpretation of my experiences. I was often misquoted, the explanations and descriptions of some aspects of the condition were inaccurate, exaggerated or completely misinterpreted altogether. Things were turned around to make the journalist sound good, to even make them sound ‘educated’ about the condition, yet they couldn’t possibly understand. Fair enough, they may well have done their research by talking to me but spending an hour with someone doesn’t make you an expert all of a sudden. I’m not saying that’s what all journalists tend to do, but I do find it’s what happens more often than not.

We are all well aware of how the media works in the sense that the more shocking the headline or story is, the more attention it will draw from the public. This may well be good from a sales point of view, but what about the overall affect/impact it can have on those involved - the people whom the stories are being written about. Sadly this is something I feel will never change, and something that nothing can be done about. By sharing any story with the media there is always the risk of it being blown out of all proportion.

The most recent approaches I’ve had from journalists have also offered money for my story. This is something I totally disagree with. When I share my story I like to think I do it for the right reasons, to inform, raise awareness and educate people about the condition. My story is just one example of what Ichthyosis can be like to live with, but there are so many different forms of the condition and even those with the same form of Ichthyosis I have (Bullous/BIE/EHK) suffer and cope with it differently to the way I cope and how it affects me. We’re all individuals at the end of the day... but we’re also humans!

This leads me onto the next issue regards to the media and their ‘shock tactics’. Whilst on the net over the last couple of days, I’ve spent a few minutes researching for articles about Ichthyosis and I found a few but not that many. One that did stand out for me which I found absolutely appauling was this one: **you may have to copy and paste the link**

http://www.samaa.tv/News17704-Baby_born_with_rare_genetic_skin_disorder.aspx

It’s about a baby born with Harlequin Ichthyoids (one of the most if not THE most severe type of Ichthyosis) and the report truly is appauling. They basically had the child on show like some sort of freak show it's shocking. I don't think I'll ever understand the media and their need for shock tactics, yes I know it brings in viewers and readers, but at the same time, who is most in the wrong in that respect? the people who put out the reports, those who write the articles or the people who read them? It's a fine line really, and it's something I feel will never change sadly. In a sense I suppose you could compare it to rubbernecking, or like when there’s been an accident on the road... Why is it that people still insist on going over to have a look at the gruesome scene despite the fact they know it will shock them? Maybe that’s a bad comparison I don’t know but it’s the only one I can think of off the top of my head - apologies if I’ve offended anyone with this.

I’ve recently shared this issue with my friend Carly (yes I do consider you a friend Carly, even though we haven’t known each other that long). She too has many of the same thoughts as I on many issues regarding Ichthyosis and the way it is portrayed in the media. She also pointed out to me how she finds that people who approach her, saying they saw something about Ichthyosis on TV or in the newspapers, and that by reading about it or watching it on TV they somehow assume they know ’everything’ there is to know about the condition, and assume there’s nothing else to know. They don’t realise just how wrong they can be in making such assumptions.

Carly’s blogs about her experiences of living with the Ichthyosis are truly inspirational (I know you probably hear that a lot from people Carly but it’s true, especially for fellow sufferers). Please feel free to read Carly’s blogs here: http://carlyfindlay.blogspot.com/ They are well worth the read, she writes so honestly and with great spirit and has a fantastic sense of humour. I’ve also learnt a lot from her blogs about the type of Ichthyosis she has too, as it‘s a different form of Ichthyosis than I have. She also tells me she’ll be writing a blog about the issue of the media too, so please be sure to check it out as I’m sure it’ll be a much better read than this one hehe.


Like Carly recently said to me though, our stories are best told by us and I totally agree. After all we’re the only people who really, truly know exactly what it's all about and what it's like to live with Ichthyosis. And what better way to do this than by writing about it in our blogs. That way, we have total control over what is said and it's in our own words to the final letter. Don't get me wrong, I'm all for raising awareness, as long as it's done in the 'right' way if there is such a thing. The way it is done is really important I feel. I’m more than happy to share my story, as long as it’s in my own words and told by me. Like I say, I’ve learnt a lot from past articles.

Just before I sign off from this blog, here are a couple more links to some newspaper articles for you to look at. Please if you can, take the time to have a look as I’m sure you’ll find them of interest. **you may have to copy and paste the links**

http://www.thesun.co.uk/sol/homepage/news/2872732/Fish-boy-stuns-Chinese-docs.html

http://www.mirror.co.uk/life-style/real-life/2010/03/04/netherton-s-syndrome-a-mother-s-story-115875-22086254/

http://www.itv.com/lifestyle/thismorning/healthandwellbeing/nethertonssyndrome/


Thanks for reading