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 . . . .

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