It has come to my attention that while I write this blog from the perspective of someone suffering from ME/CFS, there may be many reading who are not entirely familiar with the disease. So I decided to write a guide to ME/CFS for the uninitiated, covering everything from symptoms to prognosis, treatment and research. I hope it will contain some information for the seasoned spoonie too.
I can’t pretend to be an expert – this series is based on my 6 years of living with the disease, as well as reading books by authoritative experts in the field and other research (such as patient surveys, ME/CFS organisations, news articles, books and journal articles). It is my experience that patients know far, far more about their illnesses than many medical professionals, solely based on their experience living with the illness 24/7.
Warning: contains experiences of gaslighting and abuse. There is a GIF near the end.
Recently, I had an altercation with a family member on Facebook. They published a meme which is all too common on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.”
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.
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. Enjoy, and feel free to drop in anytime!