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