Life can be tough when you’re unwell. For the majority of people, illness is short-lived – they quickly recover and get on with their lives. However, for many this just isn’t the case; their illness stretches out over weeks, months, years, decades even. They are the chronically ill, often disabled, house and bed bound by their condition(s). Life becomes even tougher, being ill day in, day out.
What makes it worse is that often the chronically ill don’t look ill at all. Or they may only get out and socialise when they feel (and look) well enough, on their very best days. “Oh, but you look well,” is far from the reassuring, well intended compliment it was meant to be. Instead it becomes a a panful dismissal of the suffering endured by people with chronic illness.
Because of this, many of the chronically ill and invisibly disabled people in society choose to hide their conditions rather than encounter disbelief, dismissal and prejudice. They become invisible.
The knock on effect from this is that it becomes much harder to identify others who are suffering. The advent of social networking has been a massive breakthrough. Personally, I have met more people suffering like myself in my 8 months of using Twitter daily, than in my entire 29 years of life and illness. ON Twitter, we use the #spoonie hashtag to identify and reveal ourselves to each other, a reference to the Spoon Theory at ButYouDontLookSick.com. We become visible again. In real life it is far harder to find other #spoonies. Whether or not it is in hyper or meat space, when #spoonies do meet each other an instant safe space is created, a place to share and receive the support we deserve, without fear of judgement.
It is fear. Fear of judgement, of having to spend precious energy explaining, and defending, ourselves and why our lives aren’t the same as others, of being told it is all in our heads, that we can think our way out of illness, or worse, being told the latest quackery on ‘how to get well’. It stops people from standing up and being counted, from saying, “I am a valuable member of society.” Which of course, we are.
And that’s really what the Visible Invisibility Project is all about. It’s a space to say “This is me, I am valuable.”
We all have different sills, talents and abilities. Whether you work or not, are a parent, are childfree, are a partner or carer to someone else who is also unwell, whether you have your own business, group or project, a degree, are creative. Whatever you have achieved whilst battling against chronic illness is worth celebrating, however big or small.
So please stand up and be counted. The VIP isn’t political, I don’t intend to set the world alight, but I want it to work. I want us to show the world we are everywhere, we have sills, talents and lives. We struggle, but we keep on.. No matter what your condition, if you have ever felt invisible, join in, show others that they’re not alone, and that like the initials of the project, we are all VIPs.
Love & hope
