Ichthyosis Awareness Month: Visibility is possibility

I wrote this in May 2020. It still stands. It’s still Ichthyosis Awareness Month too.

I’m 38 years old and I’ve never seen a body that looks like mine advertising lingerie. I’ve never seen a body that’s red, splotchy and scaly, with skin flakes dotting their hair, wearing sexy (or even comfortable) underwear.

We are often told that type of skin we have is embarrassing, repulsive, something to be hidden away. We are told that bodies like mine aren’t supposed to be sexy.

No wonder a recent study has found that people with Ichthyosis are at high risk of experiencing mental illness.

And so I wanted to help change that, once again thanks to social media. I put on my best bra and undies (this doesn’t happen a lot – I am ALL about comfort!), set up the tripod in the bathroom and had some fun. I actually felt a little sexy.

And now these photos are here – for thousands of people to see.

This is my body.

No makeup, no filters, just a coating of the paraffin ointment I use twice a day.

And I love it.

There is no reason for a body like mine not to be included in advertising and media. We are sexy. In fact, the more bodies like mine that are visible, the less alone people with Ichthyosis will feel.

Visibility is possibility.

May is Ichthyosis Awareness Month. I used to take part in this -by way of sharing the stories of people with Ichthyosis and their families on my blog and social media. It was really fun, and a lot of work. But a few years back, I stopped. I stopped because, as much as we were making people aware, the ableism and discrimination still exists. The onus is always on us to educate – even within the Ichthyosis community.

Anyway, lots of amazing people are taking part in Ichthyosis Awareness Month through posting photos and words on Instagram. A few women to follow include @lyricallydiverse (who models swimwear!), @bumblebeemick, @tinasmith13,
@homerowfibreco, @lucybetts87, @mui_thomas92, @theflakefiles, @barbara.kedzior, @nelly984 and @cesilymarinosalazar.

You should also look up the #Ichthyosis hashtag and follow those people ❤️ I am so glad I can see lots of other people with Ichthyosis on social media too – this has definitely helped me find self acceptance and love, as well as community.

More photos on Instagram.

Did this post help you learn more white ichthyosis? Please consider buying me a drink. Thank you!