Invisi(dis)ability; gift or curse?
Invisibility; a basis for many superheroes. Think of all the things you could do if you could become invisible.
But invisibility really isn't that great. It means you miss out on possible opportunities, that you're not recognised for what you might have done (typical super hero dilemma), you're not understood and more than likely, people will not believe you're invisible.
Superpowers aside, having an invisible illness has much of the same issues.
Missing opportunities
An invisible illness can effect your every day life, from cognitive conditions which effect your planning, flexibility and memory, to motor problems which effect how quickly you can do thing or how much of anything you can repeat.
Suffering an invisible illness can mean missed opportunities to learn new things, or being too unwell to leave the house to join friends in what used to be a regular activity together.
It can be incredibly frustrating to be limited by an illness that no one can see and sometimes you debate whether it really all is in your head.
When this happens the natural response is to turn to others for comfort and reassurance.
But invisibility really isn't that great. It means you miss out on possible opportunities, that you're not recognised for what you might have done (typical super hero dilemma), you're not understood and more than likely, people will not believe you're invisible.
Superpowers aside, having an invisible illness has much of the same issues.
Missing opportunities
An invisible illness can effect your every day life, from cognitive conditions which effect your planning, flexibility and memory, to motor problems which effect how quickly you can do thing or how much of anything you can repeat.
Suffering an invisible illness can mean missed opportunities to learn new things, or being too unwell to leave the house to join friends in what used to be a regular activity together.
It can be incredibly frustrating to be limited by an illness that no one can see and sometimes you debate whether it really all is in your head.
When this happens the natural response is to turn to others for comfort and reassurance.
Lack of understanding
Unfortunately, others also find it difficult to understand just why you seem to be having trouble when you look fine.
You'll get sympathy at the first onset of the condition or when people first learn about it, but soon their well meaning comments get a little more practical... using the logic that would apply only if you were well. 'Just go to bed earlier.' 'If you're feeling bad, have a nap or a day of rest.' 'You need to go to your Dr.' Of course, this is only a small irk that reminds you of how different your life is from theirs, and you understand they're just not sure what to do and are upset they also can't help you.
The worse comes on later, the irritation that you're still ill, and 'haven't yet gotten over it.'
If you think positively you'll be much better off. Or if you keep complaining you'll just feel worse. Perhaps you need to push yourself a bit more. Or maybe... you just want sympathy and don't really have much of anything wrong at all.
Lack of recognition
The real lack of recognition comes directly from lack of understanding. Lack of recognition is the failure to understand just how much you have to deal with, and how draining it is for you.
This one is a hard one, because it's not something that academic education can correct, it is something we ourselves have to challenge and educate others on. We're the experts because we experience it daily and we need to impart that knowledge onto others if we want any semblance of understanding and recognition.
Explaining what it's like to have an invisible illness is hard, and explaining it to people with almost perfect health is probably daunting; I still don't know how to do it.
But one thing I read that helped was the Spoons Theory; read it yourself at butyoudontlooksick.com
You don't exist
And the last one is you simply don't exist.
Provisions made for the disabled often exclude those who look physically well.
I was recently refused access to the disabled toilets because I didn't look disabled while having a vertigo attack and muscle weakness, and even felt apologetic for considering using the disabled toilets!
I was incredibly happy, therefore, when I received my membership card to the Menieres Society and it includes on the card a short description of how vestibular disorders can disable a person and how disabled toilet access would be appropriate; a sort of 'disabled pass' for me to use with less awkward explanation in front of a bunch of strangers looking at me judgingly.
Sometimes you'll meet out-right denial about your disorder even existing, or debates about how you're making it up because they don't see enough visible signs of an invisible illness in you (stupid right?) This is particularly common in mental disorders like depression and conditions like Autism.
There is a positive to be taken out of all of this though, as seen in the video above.
The world does care, and is generally a place hungry for more information and perspectives. We just have to look to the right places to spread this.
The main weapon we have to utilise is awareness.
To combat our invisibility we need to make people more aware of our experiences, our troubles, our strengths (and we have plenty), and our perspectives on what it is like to be disabled.
Is the disability in you, or is it in the poor environment?
The world does care, and is generally a place hungry for more information and perspectives. We just have to look to the right places to spread this.
The main weapon we have to utilise is awareness.
To combat our invisibility we need to make people more aware of our experiences, our troubles, our strengths (and we have plenty), and our perspectives on what it is like to be disabled.
Is the disability in you, or is it in the poor environment?
I firmly believe we can bring on more ability to people of all walks of life by raising awareness and working together to improve our health, our community and our lives together.
Check out the Useful Sites page for ideas on some things already available in our communities to help us grow and to raise awareness, and share this page!
If you have any issues you'd like me to feature, use the contact form and let me know. =]
Check out the Useful Sites page for ideas on some things already available in our communities to help us grow and to raise awareness, and share this page!
If you have any issues you'd like me to feature, use the contact form and let me know. =]