Finding confidence while living with Ichthyosis

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It’s still Ichthyosis Awareness Month, and I’ve been writing posts to speak to the Ichthyosis community, rather than educate the wider community.

I get lots of questions from people with Ichthyosis (and without) about how I am so confident. It’s been a journey.

I know that the confidence I have no might seem easy, but it hasn’t always been this way. I used to want to kids, and change my appearance. Those days were hard. Now, I still have days where I feel invisible or too much for some people. But I’ve had almost 40 years to get used to life with Ichthyosis, to shake that internalised ableism and to feel happy in my skin. Life has been so much easier living myself instead of hating myself and wanting to change. To quote Pink, here’s all I know [about feeling confident] so far.

💛 Don’t pretend it doesn’t exist. Ichthyosis is a part of you – it’s not all of you. I’ve found being honest with myself – about my appearance, and access needs – has helped with my confidence. Acknowledging that you have a skin condition will make it easier to ask for any help you might need.

💜 Look after your skin. It’s already fragile! For me, that means showering twice a day and applying ointment to my body after each time, plus anytime on between, grooming well (removing skin from scalp, ears and any other area where it’s loose), drinking at least three litres of water a day, getting enough sleep and eating as well as possible (if I feel I haven’t eaten great, sautéed green veg, salmon and poached eggs are my go-to). Looking after your skin might involve different things for you!

💗 Rest! Well rested skin is so visible. It looks calm, feels comfortable and you feel ready to handle anything. If I haven’t had a proper rest between showering, applying ointments, getting dressed and going out, it is obvious. My skin is more inflamed, my clothes soak up more ointment and I feel flustered.

💛 Connect with others who have Ichthyosis. Seeing and speaking to others who look like me, and who experience the same things as me has been amazing. I wish I had that opportunity as a kid, but I cherish the friendships I’ve made in the Ichthyosis community now.

💜 Surround yourself with people who lift you up. Life is way too short – and great – not to have people who make you feel good and let you be yourself. For too long I tired to fit in with people who made me feel like I was a burden, or too much, and now I’ve found my people, I can relax.

💗 Wear what the hell you want. I was often so scared to stand out more than I did, and also worried that my skin flakes on dark clothes would be gross. And then in my mid 30s I started wearing the rainbow – and it’s improved my life tenfold. I also wear black, and don’t care!

💛 Take selfies – for you and for others to see you. If you’re not comfortable sharing them on social media, just keep them tor yourself, and realise how amazing you are. And speak kindly to yourself!

To the Ichthyosis community (and to anyone else who might need to read this): You matter, you deserve to be seen and to feel comfortable. I love you!

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If this post has helped you think differently about Ichthyosis, or facial difference, skin conditions and disability, please consider buying me a drink. My PayPal and Patreon are here.

You might also like to read my memoir, Say Hello, which has lots more of this advice in’ it.