I don’t often show the physical manifestation of ichthyosis. I never want to perpetuate voyeurism or be a pitiful teaching moment. I also feel that showing just a body part in pain harks back to the times I was involved in medical photography – where I was in a cold hospital room in the basement, having my photos taken. I suspect photos of me – with my eyes blacked out – are in a medical journal somewhere. I don’t ever want to be a de-identified patient – and that is why I include my face in so many photos.

But I also grapple with the concept of passing (not looking as sore as I feel); and also curating quite an active life on social media. I realise I could be inadvertently showing some kind of super disabled life by never showing my vulnerabilities. (And neither of those are untruthful – I often don’t look as sore as I feel, and I do fit a lot into my days.)

Right now my body is very sore. I’m on preventative antibiotics, have salt baths and take more Panadol than usual. I think my feet are about to go through a shed and renewal – which doesn’t happen a lot now, but when it does, it’s very sore. I’ve referred to it as Ecdysis – when reptiles shed their skin.

My hands are shedding slowly too. They look like this. They’re quite sore. It’s hard to hold hot cups, and also grip onto things. I went rollerskating earlier and my wrist pads irritate a little. But still, I wanted to skate and have fun with my friends.

I suspect my hands are sore from using sanitiser, and also being out in the world again, but who knows? This is the unpredictable nature of ichthyosis.

I’ll be back on track soon – I’m grateful for the long weekend to have some rest, and also to still be able to have some gentle fun.

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