“I usually don’t find it too difficult to do a bit of writing, yet I struggled with the idea of writing about my life with ichthyosis. I kept pondering why is that and than I remembered last year’s “I AM” campaign. I loved the idea of it. By the way this was my message.

I know I am not, just as none of those who participated in the campaign, primarily defined by my health condition and that’s why I find it a bit difficult to somehow separate this aspect of my life and write only about it. I don’t think about my illness too much. It’s side effects and practicalities just became part of my life. I don’t know how it feels not to live with ichthyosis. All the other aspects of my life are so complex and rich that they just overweight my illness.

Just to give you a bit of a background: I have recently turned 37.

I was born in eastern Europe in Bratislava, despite all negative prognosis I survived and all in all until I was 26 I lived pretty usual life. I went through all levels of education along with healthy children, graduating from University of Economics in 2003. Then I tried a conventional admin job for a while just to find out I wanted something more from life. In 2004 I moved from my native country and started living and working as a full time volunteer in a lay Christian community based in the UK.

Perhaps I will try to think in what way is my life different from the lives of others because of my illness.

I guess the most striking is the visual difference. You don’t have to have ichthyosis to experience stares, silly comments or hurtful reactions of people but having visual difference health condition makes you experience this more. I don’t see it too bad though. I’m aware that my current way of living naturally shelters me and funnily enough even moving countries helped a great deal. It is sad thing to admit but culture in the UK to compare with my native country is much more advanced when it comes to accepting people with visual differences. During one week long visit of my parents I get more of it than through whole year of living in the UK. I still think that in some way my mum had it even harder than me being constantly accused by strangers of mistreating me.

My skin requires a daily caring routine so every morning when I get up it takes me about 45 minutes to be “ready for life”. I’m a bit uncomfortable, insecure and not at all sociable before my morning shower. We make jokes with my friend (we live and work in the same place) saying “Don’t speak to me before I had my morning coffee/shower.” Coffee applies to her, shower to me. If I do everything I need to I go through the rest of the day painlessly – unlike many others suffering from the similar condition.

Speaking of living in two countries – many people do it especially in Europe but there is something unusual about me. Since I was 6 month old I started using a particular skin cream manufactured in my native country. After I moved I haven’t found anything that would suit me better for my everyday care. Anything I was given to try was either not greasy enough, or too greasy, too thick, too watery or – too smelly (!!!). So I gave up and carried on using my usual cream. Practically it means that vast amount of my luggage space when coming back from visiting my parents is taken by my skin cream. 

Being like a fairy scattering around stardust of my skin all the time I have no choice but to be friendly with all kinds of hoovers. In ideal world I should vacuum my living/working space at least once a day. Well – I don’t always do it but luckily I have never shared a room. I’ve always had one for myself, it’s important for me to have my own car, and even workwise I have an office of my own which clean myself any time needed. 

For the same reason I don’t do black or dark clothes, tops especially. I must admit that peeling of my skin is for me probably the hardest aspect of ichthyosis.

My hair is certainly different to compare with other people’s hair (very scarce, falls out before it gets any longer) so since the age of 14 I use wigs. It was my parents choice at first and I just went with it. Now I can’t imagine doing anything else. Maybe it’s about drawing less attention. Changing styles and colours can be actually fun. The only shame is that the help you are entitled to is at the end not so helpful – and that’s experience from two countries so far.

Side effects of my condition made me to adjust my lifestyle a bit. I have to protect my skin from direct sun more than healthy people. I can’t do any physical activity on direct sun (like sports) as I would overheat. Yet I very often struggle being cold. I have to say English climate is more merciful to me than the one in south Slovakia.

Yes, I did experience bullying in the school but you don’t have to have ichthyosis to go through something like this. Yet I don’t think it left any lasting damage on me. I guess I have been blessed with an amazing family and as long as you have this place of love and safety in your childhood there aren’t many things that can break you. Just as well I was blessed by a bit of intelligence as well so moving onto a grammar schools at the age of 14 naturally solved the problem.

Can’t think of much more… Perhaps one last thing. I’m still single, yet I wouldn’t want to say it’s caused by my skin condition only. When the chance came along I realised how settled and content I am in my current way of life and that perhaps I’m not willing to lower my expectations of the life partner just for the sake of having somebody. I’ll see what life brings. Or as I prefer to say – I’ll see what God has prepared for me. So far my blessings were certainly more numerous than difficulties and discomforts.

P.S. Little update: I wrote this at the beginning of November 2014. One month later I have been diagnosed with breast cancer. I decided to share my experience of fighting cancer while suffering from ichthyosis in my own blog. I hope others with ichthyosis who find themselves in a similar situation might find it helpful.”

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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