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The land of chronic illness is a foreign country; they do things differently there.’

As the great philosopher, Dr Seuss once observed:
‘You’re in pretty good shape for the shape you’re in.’

Yep. You don’t feel great. You don’t look great either- except when you make a big effort and everyone thinks things are back to normal- good news- you’re well again! Except that you are not. Phew! You may be chronically ill but at least you won’t be embarrassing people with your lack of grooming skills.

Your body, your lovely, lovely body (oh how you appreciate NOW all that it has done for you!), who you have taken onto sunny beaches, shovelled takeaways into, forced onto long walks and into dance classes and pub crawls, biscuit binges, hearty sessions of coupling and clubbing, and long days at the office, has HAD ENOUGH!

In my thirties I spent some years living abroad. I can still remember the intensity of my first months there, of my head and heart bursting with complete incomprehension, of the relentless over-stimulation from new noises, smells, foods, colours, …and I mourned and grieved for the things I had left behind in a way that I would not have thought possible.

If we are lucky, and then our lives in the developed world are spent holding back a continuous tide of viruses, bugs and minor ailments, so we tend to get a big ‘meh’ about health problems. We have ‘earned’ the right to be healthy- we eat the right foods, take in the current thinking on gluten, cholesterol, mindfulness, stress, and running. We know that if we do get sick, either time or the right drugs will sort things out. We are better than illness: and if we make sensible decisions, we stay well. Right?

The day when your body announces to you that it is not going to do what you want anymore is not usually that different from a lot of other ones. It is no wonder the Emergency room has proved to be fertile ground for the writers of TV dramas. The beginning of a long-term illness would never keep the audience transfixed on their screens. Weakness, pain and incapacity can often creep up with a cruel stealth…so when the specialist asks you exactly when the problems started, you might find it difficult to answer.

The body that has served you faithfully, usually unappreciated and largely unnoticed, has now turned treasonous and is apparently going to continue to inflict assorted indignities and pains upon you, which looks like being as much fun as the plagues of Egypt, and likely to last longer. Welcome to the world of the Chronically ill!

Chronic illness takes no prisoners. It takes a perverse pleasure in starting small with pain, fatigue and assorted symptoms before moving on to the smashing up of your social life, your sex life, your fitness, your appearance, your job, your status, your finances, your confidence and numerous relationships and ambitions- in fact most of what you were, is now in the past and filed under ‘memories’ and the future is full of uncertainty. Your body doesn’t look or behave the same, and you won’t feel the same. In fact often you won’t know what to feel .

You will try to accept the fact that you have been sacked from your previous life and given the 24:7 job of ‘being ill’. You will become a professional patient and will become like a truffle pig, rooting out every tiny scrap of help and information in order to gain that precious diagnosis, but then the diagnosis is that there is no cure and you are likely to be stuck in this hellhole for the foreseeable future, and you will wish you hadn’t bothered.

To paraphrase L.P. Hartley: ‘ The land of chronic illness is a foreign country; they do things differently there.’
Change is not easy when you want it, but when it bursts into your life uninvited, it can feel as violating, as if you have been broken into, and strange hands have been rearranging your sock drawer, and curious eyes reading your diary.

There is a lot of disruption to process mentally, a lot of adaptations that will need to be made in this new country of illness. And did I mention that there is a temperate climate in this country: yes, there is a lot of precipitation, a lot of tears, a river of them in fact. But in time the structures that have burned down will turn to ashes, and the tears will water this fertile soil, and something new will grow there. Only time will tell when that will be, and what that will be.
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Comments

"You may be chronically ill but at least you won’t be embarrassing people with your lack of grooming skills."

Great post, helly. You've really captured it, not just about grooming. thanks.
 
This is really and truly excellent, and describes a lot of the thoughts I have had about chronic illness. You really don't realize how much you've relied on your body to do your bidding until it goes on strike. And the 24/7 job of 'being ill'... and the searching for scraps of information... all of this seems very familiar, helly. ;)

Awesome work. :)

-J
 
"You will try to accept the fact that you have been sacked from your previous life and given the 24:7 job of ‘being ill’. You will become a professional patient . . ."

A great piece of writing, helly -- thanks. With respect to being a "professional patient" (a term I've considered applies to myself), I've sometimes considered describing myself as having worked in the field of "disability management" when people ask me what I did when I was working. Of course, it would really put me "on the spot" if they wanted details. I wouldn't want to have to explain the disability I managed was my own, and only my own. After all, I look so well when I'm not "embarrassing people with my lack of grooming skills"!
 
Great summary, eloquently put. I love some of the expressions you use for aspects of chronic/our illness - hope they catch on!
 
Beautifully written and perfectly described, Helly! The creep of incapacity and the later point at which you realize "you have been sacked from your previous life" are especially evocative. It's so helpful to hear someone articulate what I had not myself put together. Thanks so much for this.
 

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