About

Hello, and welcome!

I’m Siobhan – a 20-something living in country Australia with her family/carers. I’m a tea-drinking, dress-making, cat-loving, serial angry letter writer.*

6 years ago, I was diagnosed with ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome), an event which has shaped the rest of my life. I had to give up my studies in psychology and haven’t been able to work or study since. My 20s have been spent mostly bedbound or housebound.

In this blog, I intend to document my adventures with ME/CFS and my various other illnesses (dysautonomia and anxiety). Along the way, I’ll share my sewing and knitting creations. Feel free to contact me if you have any questions about ME/CFS, or if you just want to chat, at: chronicallysiobhan at gmail dot com.

You can read more about my experiences with severe ME/CFS in my very first blog post. I’ve detailed my period of hospitalisation and abuse by the medical profession in my post about gaslighting. And if you wish to know more about my day-to-day living, check out a day in the life (with an update on the relapse I suffered since writing that piece). (Follow along with the personal health tag for more.)

For those new to ME/CFS and wondering what it’s all about, I’ve published a five-part Dummies’ Guide to ME/CFS on my blog, which covers everything from statistics, to treatment, severe ME and the trouble with its name.

 

*Check the letters section of The Age for proof.

 

Lilu & Bey

In 2015, a friend and I started a business called Lilu & Bey. We specialise in handcrafted softies and art prints, with 100% of our profits going to UNHCR Australia. We aimed to channel our frustration with the Australian government’s cruel refugee policies into positive action, and are pleased to announce we have raised over $500 for the UNHCR (as of September 2016). You can find us on Instagram, Facebook or our website (less frequently updated).

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Rupert the Happy Dachshund. One of our most popular items.

 

My writing elsewhere

What I Need People to Understand About Severe Chronic Fatigue Syndrome – The Mighty

4 Downsides (and Bright Sides) of My Illness – The Mighty

Why I Refuse to be a ‘Good Disabled’ Person – The Mighty

Warrnambool’s Siobhan Simper calls for better disabled access in the CBD – opinion piece in my local paper, The Warrnambool Standard

We Cannot Continue to Let Doctors ‘Gaslight’ Chronic Illness Patients – The Mighty

The Trauma of Not Being Seen: Invisible Disability and Modern Day Hysteria – Adios Barbie

Dysautonomia Awareness Month 2016 Guest Post: The Need for Increased Telehealth Options for Rural Dysautonomia Patients – Living With Bob

Why I Think ‘Chronic Fatigue Syndrome’ Needs a Name Change – The Mighty

What I Wish For Most This Christmas as Someone With Severe Myalgic Encephalomyelitis – The Mighty

Shaving My Head Helped My Take Control of My Life When an Illness Took Away My Independence – xoJane

The wink wink, nudge nudge guide to parliamentary entitlements – Independent Australia

The Ongoing Process of Grief When You Have a Chronic Illness – The Mighty

Seven things you probably don’t know about chronic fatigue syndrome – Mamamia

What the ‘female’ traffic light response reveals about how society views women -Independent Australia