Thanks to Twitter I know this week is “Invisible Illness Week”. And decided I would do a post to help raise awareness.
CFS (and ME) are classed as invisible illnesses.
For many reasons :
People can’t see it
People often don’t understand it
People often dismiss it as trivial and unimportant – despite some sufferers having died from it. eg. Sophia Mirza, Emily Collingridge.
(Sophia Mirza was the first person in the UK to have Chronic Fatigue Syndrome recorded on her death certificate in 2006.)
Some people are still so ignorant that “they don’t believe in it”.
It is a condition which can fluctuate (often dramatically) and this seems to cause confusion with people.
Although many conditions fluctuate to some extent. But with CFS and ME this isn’t “allowed for”.
Sufferers often look well – that is when you actually see them !
Much of the time we are invisible to the outside world as may not get out much.
Some sufferers are totally housebound, and worse, may be bedridden. In some very severe cases have to be tube-fed.
It is very hard to explain to people as there is often a huge list of symptoms – it is NOT just about being tired.
There is currently no recognised, established treatment that cures.
Many GPs are unhelpful and dismissive – which is actually a national scandal.
Many sufferers lead very reduced, limited lives much of the time.
But people just think they have become a bit quiet, unfriendly, anti-social, not making an effort, depressed, etc etc
Some sufferers manage to continue to work – but this often takes everything they have. And they have no energy left over for any quality life.
This isn’t a very good post as I have just listed points as they came to mind. Not really in any order.
And there will be lots more points, but I haven’t any more energy to spend on this just now.
Later today I am having some lunch with a friend.
We used to see each other every week.
But this year (now mid-September) this will be only the 2nd time I have managed to go out anywhere with her. The last time was in January, also for lunch.
We have managed the odd Friday evening in each other’s house. But even that hasn’t been often – maybe 3 or 4 times.
So, all going well, I will be enjoying a nice lunch. And nice company. And maybe a little glass of wine.
And hopefully looking reasonably ok. Well, clean and dressed anyway !
Whereas yesterday I was in bed all day following a 3 hour burst of urgent work the evening before.
And spent much of that time worrying and hoping that I will manage the lunch.
But that’s invisible illness for you . . . .
#ME Insults on Twitter
October 21, 2012
Anne Raw Emotions bullying, comments, ignorance, invisible illness, society, things People Say, twitter, understanding 16 Comments
ME Insults
In my post of 6th Oct I mentioned that the poor treatment of people with CFS or ME was a scandal. And I had mentioned the ME Insults timeline on Twitter. A bit more about this now.
Twitter is marvellous for connecting with people worldwide on endless topics of interest.
Recently someone posted (tweeted) a message suggesting that people share any insults they had received since having ME or CFS. This then quickly expanded to include any comments which were – ignorant, hurtful, nasty, silly or just plain stupid. It was suggested that any replies included #MEinsults in them – so they would be recorded in a separate timeline in Twitter.
And it just took off.
Hundreds of people posted messages in just a day or two. What started off as a way of sharing and venting frustrations about how folk had been treated became more serious as all the posts (tweets) came thru. And were read. Seeing so many examples in black and white of how many people had been treated poorly (by GPs and/or friends, family, relatives) was incredibly shocking. None of it will be news to many people who have had CFS or ME – especially if over a long period of time. But seeing so many examples in writing somehow made it really hit home.
Some random examples from the #MEinsults timeline as follows :
“You have been unwell for far too long now. Its time my son found himself a new wife.”
(Has got to be one of the most cruel ones.)
“That shooter had something wrong with his head – and you have too.”
(Incredibly from a GP to his patient and referring to a gunman who had shot and killed several people in the city earlier that week.)
There is something wrong with your head.
(A variation of above but from a GP’s receptionist this time. Yes – the receptionist.)
“It doesn’t matter how bad it makes you feel – you must keep doing it.”
(My 1st GP’s view on keeping on exercising on top of working full-time while my health and symptoms got worse and worse.)
Do you not get bored in the house all day ?
We all get tired but we just have to push on.
Maybe you should try to be a bit more positive.
If you bring her back to school tomorrow then we will say no more about it.
(From a head-teacher to the mother of a severely affected pupil.)
I couldn’t be bothered with that.
I’m not the sort of person who would get that.
I don’t really believe in all that.
I don’t think he is really trying to get well.
You really shouldn’t keep him indoors so much – its not good for him.
(From a GP to the mother of a severely affected sufferer who had deteriorated to the extent he was almost bedridden.)
We don’t do home visits for fatigue here.
(A GP surgery refusing to visit a severely affected housebound sufferer.)
This is just a very brief selection.
Some thoughts :
Why is this still tolerated today ? And why do people feel it is ok to speak to sufferers like that ? And would these sort of comments would be made to people with cancer or multiple sclerosis ?