PCS & Discrimination in the UK?

“Disability [is] a disruption in the sensory field of the observer. [It] is located in the observer, not the observed, and is therefore more about the viewer than about the person using a cane or a wheelchair. The term disability is a categorization tied to the development of discourses that aim to cure, remediate,or catalog variations in bodies. Thus, disability is part of a continuum that includes differences in gender, as well as bodily features indicative of race,sexual preference, and even of class.” – From a recent Harvard study paper…

Scoffed at by your GP? Singled out at work despite having a diagnosis? Finding your pre-injury relationships are disappearing faster than you can blink?

You may have been repeatedly refused treatment or referral through your Dr, been denied benefits after losing your job or home through PCS? Even your partner, husband or wife could totally fail to understand what you’re experiencing even though you’ve tried to explain, they still accuse you of ‘faking’ or ‘laying it on thick’?

Well there is a fairly common situation to be in if you’re suffering with PCS or PPCS, and those people who make your life even more unpleasant than it is are simply ignorant, in denial or just prejudiced towards invisible illness & hidden disability.

I’ll be looking at individual cases & issues related to discrimination in the U.K, it could be media driven hatred of people on disability whom seemingly ‘don’t look ill’ or it could be the institutionalized attitudes we have as a nation towards what actually defines disability.

I’ve certainly had my fare share over 6 years & its toughened me up yet I still believe a major perceptive shift is needed & of course education, hence our awareness drive, one mind at a time…

The term disability is both helpful and harmful to those who could fall under its umbrella.The category engenders images of helpless, hopeless individuals who are without purpose or meaning in society, who cannot contribute towards society, and who must rely upon others for assistance even with the simplest tasks. However, these associations are merely products of society, and do not speak of the experiences of those who fall under the umbrella term of “disability.” The disabled are merely individuals with unique challenges in life, which requires creative solutions to these challenges. When given the necessary accommodations for such creative solutions, most disabled persons are able to complete required tasks.
The term disabled is only beneficial for acquiring needed accommodations; afterwards, it becomes harmful and marginalizing.
Many persons with auto-immune diseases and mental illnesses experience frustration gaining acceptance and support from their peers and colleagues. The disabilities and symptoms they experience are concealed, yet can be unpredictably debilitating. Many sufferers worry about stigmatization, and do not want their acute mental faculties or aptitude to be overshadowed by their disabilities.


September 10-16, 2012 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 10-14 online for free with speakers.

2012′s theme is INVISIBLE ILLNESS? SHARE YOUR VISIBLE HOPE! This is a chance for participants to upload photos that show their hope to encourage others (both ill and healthy).

There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!

With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses…..

Invisible Illness Week – 10th – 16th September – Check It Out Here….


2 thoughts on “PCS & Discrimination in the UK?

  1. I can attest to a discrimination being present against those who do not “look” disabled. I was born with Mitochondrial Myopathy, a disorder under the umbrella of Muscular Dystrophy. I never looked disabled, nothing obviously wrong with my body from the outside. I did use a wheelchair when I was younger but most people thought I was “just having fun” in it. I was wracked with pain though, and would become paralyzed in my extremities… but the people judging and discriminating would never take the time to ask, or learn. The MD made my life challenging. Some times I thought it would in fact be easier to have no legs, at least then society would make allowances for my inability to perform on the level my outward appearance projected I could.

    Now I have PCS (the MD is under control but its a tricky balance to maintain) which has riddled me with extreme anxiety and depression, and I feel crazy half the time. My family and friends know what I am dealing with but they don’t quite grasp how much of a struggle it can be. It’s hard being aware of the issue but unable to stop any of it. Some times it feels like I am watching a different person live my life.

    This site is wonderful by the way. Thank you for creating a virtual space dedicated to those who suffer from PCS. I am learning so much by reading everything you have to offer, thanks again!

  2. Thanks again, this site is a continuation of the groups we set up on Facebook which are more of a real-time disussion/support thing for a worldwide PCS cause. It started over 2 years ago & we even have a worldwide PCS awareness day on June 24th.

    I can empathize with friends lack of understanding, one loses friends sometimes because they fail to even want to understand but then if that is the case were they true friends to start with? lol

    I represent the non-establishment view of what PCS means & is like from the inside out, as a real person not some textbook version of what some so-called expert says about it cos I don’t know one expert who has ever had PCS?

    Please keep reading there is so much more to come….

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