Each week, I am publishing a part in a series about ME/CFS. This is Part II, in which I discuss how ME/CFS can affect patient’s lives, and discuss in detail the experiences of severely affected patients. You can find links to the other posts in the series at the bottom of this post.
Last week, I introduced you to the horrifying and complex disease that is ME/CFS. Today I’d like to walk you through how this disease can affect patient’s lives, with some first hand experiences from severely affected sufferers, myself included. This meant delving back into traumatic experiences that still affect me every day. However, I am always grateful when other sufferers share their stories, so it is my turn to do the same.
Hi folks! Just a short note to say I had an opinion piece published in my local paper about disability access in Warrnambool. The state of shop access and disabled parking bays in town is abysmal, yet with council elections coming up, no candidate has made disability advocacy a priority. I want that to change.
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.