You Can

 

YOU CAN

It strikes me how there is no word to describe the many, like my wife, who have been ill and disabled for decades, 20, 30 years and more.

What word could possibly expresses the death and breath of their suffering, their catastrophic losses, the appalling devastation of their life?

A term like the “long term sick” is a hopelessly inadequate representation of the dire situation they are in.

Add to that the extra burden many are forced to endure of being saddled for years with a vague diagnosis that has no boundary to safely define it, nor accurate physiological explanation or respect and you have “absent citizens” thousands, maybe millions strong, who knows, hidden in plain sight, thoroughly invisible.

There is much awareness these days about the power of stereotypes reinforcing biased beliefs.

What stereotypes, what biases, do terms like the “long term sick”, the “long term disabled”, the “bed bound”, the “house bound” conjure up about people? 

What about the life wrecking invisible disabilities on top, like noise, light, touch and perfume sensitivity, cognitive dysfunction?

When there aren’t words to describe the level of suffering, when you are disbelieved, it adds to an increasing burden of difficulty on top of an impossible to endure life.

In this context language is so important. 

Surely it is time to reflect on accurate, recognisable , validating words to describe profound suffering and just what it takes to endure it.

A few years ago the psychiatric literature was very vocal about being on the side of the “poor” doctor and their “heart sink” patients, for whom they can do nothing.

How many desperately ill people, as a result, have internalised this and applied it to themselves, as being some kind of annoying, time waster, not worthy of the doctor’s time? 

Stereotypes are so powerful in society, it would be difficult, actually not to.

How many friends and family buy into it too?

How much does the whole of society buy into it?

But you don’t have to.

I quoted Linda yesterday, how even if it seems impossible, still you can believe in yourself, still you can trust yourself, still you can make your life happen and with dignity still you can move forwards, into the next moment, into the future.

What struck me so much watching the recent Channel Four feature on Merryn Croft , was how she and Kara Jane Spencer, also much missed, exemplified this.

In their short lives they reached out with extraordinary courage, love, compassion and nobility, bringing hope to the world, powerfully raising awareness of the need for a change in attitude, provision and understanding, inspiring everyone of us.

As we say on Stonebird every life is precious and every life matters. This should be reflected in how we speak of the very ill.