Inspiration porn, cripple punk and why I refuse to be grateful for my chronic illness

An enamel brooch in the shape of a love heart. The banner across the brooch reads
Disabled enamel pin. You can purchase from NormalLand on Etsy. Isn’t it perfect?

Today I’m sharing with you another piece I had published on The Mighty. Firstly, if you are a spoonie, or know someone who is, check that website out! It has contributions from people with all different abilities and illnesses speaking from the heart about their experiences. You’ll get lost in a rabbit warren of amazing stories, believe me.

After this piece was published, I received many comments complimenting me on my ability to make the best out of my illness. I’m not sure that was my intent when writing. Sometimes you have to laugh at the ridiculous situations your illness places you in (strolling naked along a hospital corridor after being showered by nurses? Anyone?), and I have grown as a person since becoming sick. However, this doesn’t mean I have to be grateful for my illness, or enjoy it.

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A Tale of Three Hemlocks

For much of my sewing life, I was obsessed with dresses – making them, wearing them, stalking beautiful ones online. Now my health has come to the point where it is hard to maintain a prolonged project, or wear anything more fancy than ponte pants and a long shirt.* Enter Grainline’s Hemlock Tee, a free pattern download from the creative minds at Grainline Studio.

I’m sure this pattern has been done to death already, but I love my three makes and wear them all the time. It is quite rare that I remakeย anyย pattern, preferring the challenge and novelty of the new, so it is a testament to the Grainline Tee that so many versions are nested in my wardrobe.

1 – Ponte Stripe Hemlock

A woman standing in a garden, wearing a striped knit tee and black skinny pants.

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Beginnings

More scenes from the Hopkins River

A post shared by Siobhan Simper (@siobhansimper) on

Above: my island home

Hello! And welcome. I’m Siobhan, a 20-something living in country Victoria, and I’ll be blogging about life with severe CFS/ME, with some fun crafty creations thrown in along the way. Having CFS/ME turned my life upside down, and yet severe cases are underrepresented in the media and popular discourse. I want to change that.

Without further ado, here is an unedited version of a piece which was recently published on The Mighty, about life with severe ME/CFS.ย Enjoy, and feel free to drop in anytime!

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