Tag: invisible illness

Invisible illness and irrational hatred

 

Living with an invisible illness often means being under constant suspicion of being workshy and a malingerer, and of committing benefit fraud. Ignorant people often attribute physical but invisible illness to mental health problems, and then claim that they are not real problems. This is usually wrong on two counts, since not only are many of those illnesses not mental health problems, but mental health problems can be just as real and disabling as any physical problem.

Unfortunately some of these ignorant people have a platform to spread their ignorance and hatred through. One such person is Rod Liddle, who writes in The Spectator. After being contacted by the Fibromyalgia Society he launched an attack on the disease, saying that “it is another one of those imaginary afflictions claimed by malingering mentals.” He went on to present a list of “Things Which Definitely Are Not Illnesses or Diseases“ and included Fibromyalgia and M.E. in that list. I have complained to the Press Complaints Commission about this article, and this is the text of my complaint.

 

The article breaches clause 1 part 1 of the code of practice.
i) The Press must take care not to publish inaccurate, misleading or distorted information, including pictures.

The article breaches the code of practice as it is inaccurate and misleading.

The article lists Fibromyalgia and M.E. under the heading “Things Which Definitely Are Not Illnesses or Diseases”

It is factually incorrect to state that these are not illnesses. Fibromyalgia is listed in the World Health Organisation’s International Statistical Classification of Diseases and Related Health Problems under M79 Other soft tissue disorders, not elsewhere classified, as M79.7, Fibromyalgia. Myalgic Encephalomyelitis (M.E.) is listed under G93 Other disorders of the nervous system as G93.3 Postviral fatigue syndrome - Benign myalgic encephalomyelitis.

The article states “[Fibromyalgia] is another one of those imaginary afflictions claimed by malingering mentals.”

The author has no grounds to claim that fibromyalgia is imaginary, as it recognised as a real physical illness by the WHO. He also has no grounds to use the phrase “malingering mentals.” Fibromyalgia is not a mental illness, and even if it were, a mental illness is a real illness and is not “malingering.” This phrase is incorrect and is disablist hate speech. The errors in this article contribute directly to hate crime, abuse, and verbal abuse against sick and disabled people, of which there has been a significant increase in recent months. (As reported by Scope at http://www.scope.org.uk/news/matthew-parris-and-times)

 

I have saved a Freezepage copy of the offending article in case it disapears.

http://www.freezepage.com/1317921668VVYABLRSUZ

You can make your own complaint to the PCC on their website.

http://www.pcc.org.uk/complaints/process.html

I recommend this interesting blog post on the different reactions to visible and invisible illness.

http://e-s-d.deviantart.com/journal/35186426/

 

Don’t judge my ups and downs

I want to address an extremely worrying lack of understanding amongst the general public about how sickness and disability work. This tweet is typical of the problem. (This is not an attack on the person that tweeted it, I just want to address the perception so please leave her alone.)

[blackbirdpie id=”103038413380403202″]

Sickness and disability can be immensely variable. I can’t speak for all disabilities, but I can talk about my own. I have good days and bad days. Actually, I have good and bad minutes, hours, days, weeks, months and years. I can have bad patches within bad patches. Basically, my health varies to an incredible degree, and what I do at any point is no indication at all of what I can do at another point.

Some days I need a walking stick. Some days (most of them at the moment) I need a wheelchair. Some days, I can walk unaided. Some (rare) days I can run up the stairs.

When it comes to events, though, I take no chances. If I had to attend a football match like the quote above was talking about, it would be wheelchair all the way. (I hate football, but run with it for the example!) The important thing to realise is that I might start out able to walk, maybe even unaided, but I would still have to be in the wheelchair on arrival at the game, because otherwise I wouldn’t have it with me later. By the end of something like that, I would probably be barely able to keep my head upright while sitting in the chair.

A few years ago I attended the recording of a TV show in London. The two hours of travelling was OK, but when we arrived I desperately needed to sit down. We had turned up an hour or so early as instructed, but, horror, we had to queue for that whole hour. We had travelled by motorbike and I had no mobility aids with me because I was relatively well at that point, but that queue was hell. I was in agonising pain by the end of it. Had we just been walking around a bit, I would have been fine but it was the standing in one place that hurt me.

And so, I hope you can see the issue here. It is perfectly possible for me to be in a wheelchair one day, and then strolling across the town centre the next time you see me. And for a big event, I will be in the wheelchair anyway, not for any special treatment, but because if I don’t set out in the wheelchair, I will end up being carried home or leaving in an ambulance called by worried people when I collapse. The point is, YOU can’t judge. You have no idea how my body copes with each situation.

Note: comments that “We know you’re not faking it but the real cheats spoil it for everyone” will be deleted.