Ichthyosis Awareness Month – on community and dignity

It’s Ichthyosis Awareness Month. I’ve written a little about how I really want to focus on community and dignity.

Image: a woman with a red face and dark curly hair tied back, smiling, wearing a navy, purple and mustard floral top that has a frilled hem over a short light blue denim skirt, dark boots and leggings. She’s also wearing an intricate brooch that’s a beehive. She’s standing on a balcony near a grey wall.

Here are some ways to raise awareness while maintaining your dignity:

Take up space – and don’t apologise for it. For me this has meant not fearing leaving my skin or ointment behind.

Demand access and inclusion in all aspects of your life – and access for others too. This could be be asking for room with a bath in a hotel, applying for a disability parking permit, asking for a chair at a concert, or asking a friend/organisation to hold an event indoors in hot weather – all to make the experience more comfortable. (I’ve done all of these things – and demanding doesn’t mean I don’t say please and thanks.)

Don’t diminish others’ experiences of Ichthyosis. We all have different symptoms, appearances, treatments and levels of self acceptance – and some people endure more discrimination than others. It’s all valid.

Campaign for rights and representation – for you and others. Write complaint letters about discrimination (when you have the energy); speak out about exploitative media representation of Ichthyosis; and don’t participate in harmful media.

Post unfiltered photos of you on social media. Let the world see your beauty; let the world see your difference.

Say no to answering intrusive questions about your medical history. You don’t have to tell strangers how you “got like this”. Will it improve their day? Probably not.

Connect with others who have Ichthyosis. This is especially important for parents of kids with Ichthyosis to connect with adults with Ichthyosis.

Don’t be afraid of showing joy. Life with Ichthyosis can be pretty difficult at times – with the itching and pain, a different appearance, and also the micro-aggressions and discrimination faced. But life is also pretty amazing. Seek joy, and show the world that you experience joy!

If this has helped you, please consider buying me a drink. Thank you!