Becoming confident with ichthyosis

I get lots of questions about how I am so confident when I have ichthyosis. To be clear, these questions are often from people with skin conditions or facial differences, not people outside of these communities being ableist.

The statements some of the people have made about themselves and their appearances breaks my heart. Words that are steeped in self hatred and embarrassment, and also the desire to fit in.

Firstly, I’m so sorry you’re struggling; and I hear you. Self acceptance and pride takes lots of practice .

And it can be hard to accept and love yourself when so many people stare and ridicule you. I know. You are not the names they call you.

I came to accept that I have ichthyosis and this is how it will be for the rest of my life at a pretty early age. That was a fact. It didn’t mean I was happy with myself back then, it just meant I had stopped looking for a cure – because there isn’t one – and trying to change through treatments and makeup left my health and appearance worse off.

I stopped with the negative self talk. I wouldn’t tell my friend they look like ugly or like a monster, so I don’t speak like this to myself.

While my work is in appearance activism, I am more than my appearance. You are too.

I started wearing clothes that made me stand out in a different way to my appearance. Clothes that make me happy.

I give compliments to others, and became comfortable receiving compliments.

I look in the mirror and take selfies without shame.

I surround myself with people who look like me. Social media is great for this. Search #Ichthyosis or #DisabledAndProud on Instagram, or follow the amazing disabled people I share here to start.

I stopped consuming media that put people with skin conditions down through negative advertising around skincare and flaky scalps, and that didn’t feature people who looked like me. These weren’t uplifting. I wrote myself into the media instead.

I am visible on social media and in the media so that people with skin conditions and facial differences feel less alone.

I found orgs like Changing Faces and Face Equality, which had useful resources based on lived experience.

I stopped covering up and hiding myself or parts of my body away. I stopped trying to be like others. You don’t have to confirm to a beauty ideal. You are enough.

And I’ve sought mental health support when needed. Lifeline and Kids Helpline are useful, or see a regular counselor.

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If this post has helped you or you’ll use it in your work or school, please consider buying me a drink.

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Yesterday I wore this fun outfit – double trifles! Trifle is a fave dessert – it runs in my English genes – and so when La Vidriola and Rattamattat released a trifle brooch & top respectively, I had to have them! So cute & mouth-watering! My skirt is Gorman x Mangkaja Arts Resource Agency.

 

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