Warning: contains a GIF
Each week, I am publishing a part in a series about ME/CFS. This is Part IV, in which I discuss the prejudices faced by ME/CFS sufferers, and its problematic name (which may or may not be as bad as crapweeds and stenchblossoms). You can find links to the other posts in the series at the bottom of this post.
Last week, I explored the limited treatment options available to ME/CFS sufferers. This week, I will explain what causes said lack of options, namely, prejudices held by the medical community and its problematic nomenclature.
Continue reading “A Dummies’ Guide to ME/CFS: Part IV, Prejudice & What’s in a Name”
Hi folks! I’ve been a busy little beaver writing for other sources (I have a lot to say!). I’m pleased to announce today I had a piece on the intersection of gender and disability published today on Adios Barbie, called: The Trauma of Not Being Seen: Invisible Disability and Modern Day Hysteria. I’m sure there are plenty of female spoonies who can relate to being treated like a hysterical, fainting 19th century stereotype by their supposedly 21st-century doctors.
The Mighty was also good enough to repost one of my blog articles about gaslighting as We Cannot Continue to Let Doctors ‘Gaslight’ Chronic Illness Patients. I am pleased to be able to spread the word about the abuse I’ve experienced at the hands of the medical profession in the hopes that it will make it less likely to happen in the future.
Each week, I am publishing a part in a series about ME/CFS. This is Part III, in which I discuss what limited treatment is available to ME/CFS sufferers. You can find links to the other posts in the series at the bottom of this post.
Last week, I discussed the severity of symptoms of this illness, and shared some stories of severely affected sufferers. This week will be less intense, as I detail the treatment options available for ME/CFS (spoilers: there are none).
Continue reading “A Dummies’ Guide to ME/CFS: Part III, “Treatment””
Content warning: abuse
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.
Continue reading “A Dummies’ Guide to ME/CFS: Part II, Prognosis, Severity & Scales”
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.
Continue reading “Op ed published in The Standard”
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.
Continue reading “A Dummies’ Guide to ME/CFS: Part I, Intro”
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.”
Continue reading “Disability and gaslighting: when being disabled makes you crazy”