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I Am Disabled......and that is ok!

6 August 2015

I was born with a congenital cataract in my right eye, which meant I have never had clear vision out of that eye. I have grown up not knowing any different. Often people would ask me, ‘what’s it like to only see out of one eye?’ which I would reply ‘I don’t know! What’s it like to see out of both eyes?’ As far as I was concerned for a long time, I saw things how everyone else did!

 

Over the years as I grew up I was told that I wouldn’t be able to do certain things, like drive a car. At the age of twenty-one I got my license. Seeing out of one eye never stopped me from doing anything, because it was my normal. It was so much my normal that I would actually forget that I couldn’t see out of that eye.

 

I remember a time that I dropped something and it rolled under the fridge, I got down to look for it though couldn’t understand why it was so dark under the fridge. Then it dawned on me! Well I was looking under the fridge with my right eye! Still to this day I find that story funny!

 

I didn’t see it as a hindrance, yes maybe a little annoying when people didn’t know I was looking at them, because I also had an eye turn, though over all it was just who I was. I still achieved the things I wanted to achieve and just adapted where I needed too.

 

It wasn’t until I started to immerse myself into the Multiple Sclerosis community and listened to others talk about their Optic Neuritis and how debilitating they found it, especially those who only had one eye affected. It was then that I realised I had been living with a form of disability all my life, yet I just didn’t see it that way. Having that moment of realisation hasn’t changed that either, I still don’t see it as a disability.

 

What I have noticed since my MS has progressed is how different it has been to know what life was like before, when my arm and hand would behave normally or I had more energy. It has been harder for me to accept my disease because I have been aware of what it was like before. A complete contrast to being born with my cataract, where with my MS it has been a noticeable change, as something else came before it.

 

It took me some time to accept the terms disabled and chronic illness with my MS. As Carly Findlay over at Tune into Radio Carly says in her latest blog post, there are such negative connotations in society relating to disability and Chronic Illness. I was afraid that if I accepted the label I would be seen as weak and as I had already been ridiculed by some for not being Polly Positive in regards to my diagnosis, I shied away from the label. Attempting to continue on to be the super human I thought I had to be. I mean surely I could pull that off, I had been walking through life with a disability and it hadn’t affected me, so why would this one!

 

The further I immersed myself into the MS community, the more I became aware that accepting the terminology, was a step towards accepting that this was permanent in my life. Also by accepting the word disabled, didn’t actually mean accepting I couldn’t, instead it allowed me to start focusing on what I was able to still achieve. No longer concerned about not being able to do things because I was afraid of how it would be perceived I could actually look at what I could do now.

 

There is something else that comes with accepting the labels, I could now let go of the idea I had to be super human, and open the door to accepting help. Something I had struggled with for a very long time, because I felt undeserving and that someone else needed it more. Now I see it is ok to need help, it doesn’t make me weak, it means my precious energy and time can go towards other things. Letting go of that stress made a world of difference to the management of my MS.

 

I relate more to the label of Chronic Illness than I do Disabled, mainly because there is only occasional days that my MS becomes visible and physically disallows me to do something. My MS is most certainly chronic though, here with me everyday, and as I mentioned in my first post. Loyal to the end!

 

Hi! My name is Amber, I have a Chronic Illness which at times makes me disabled and that’s Ok!

 

Comments (12)

For the few years I've known you, I've always admired your tenacity and 'can do' attitude. You're not superhuman and I've never ever considered you disabled...as you say, you're now living with a chronic illness. I did have a chuckle with your story about trying to find something under the fridge, it really explains what you've lived with all of your life, and is your 'norm'. You're allowed to have negative thoughts at times, days when you just want to scream at the wall and days when you feel that it's just all too hard, but beneath that is a person who is a fighter and who, once she makes up her mind to do something.....follows through. Thank you for sharing your thoughts, as usual, they're inspiring and I'm full of admiration for you. Love as always.....Miss P xx

For the few years I've known you, I've always admired your tenacity and 'can do' attitude. You're not superhuman and I've never ever considered you disabled...as you say, you're now living with a chronic illness. I did have a chuckle with your story about trying to find something under the fridge, it really explains what you've lived with all of your life, and is your 'norm'. You're allowed to have negative thoughts at times, days when you just want to scream at the wall and days when you feel that it's just all too hard, but beneath that is a person who is a fighter and who, once she makes up her mind to do something.....follows through. Thank you for sharing your thoughts, as usual, they're inspiring and I'm full of admiration for you. Love as always.....Miss P xx

You put that all so well, Amber - thank you! Your experience of "unburdening" yourself by accepting labels and stopping the ridiculous game of pretending to be super-human in the face of a chronic illness is one I completely relate to. I have never been happier than I am since I made the decision to go part time and manage my life for ME rather than to meet the expectations of others. Thanks for a really great post!

I am still at the 'need to be superhuman and super happy for fear of being labelled lazy or whingy stage' it's exhausting both physically and mentally. Your post was great for me to read.

Hi Jode...Thank you for your comment. I can so appreciate and understand the fear associated with accepting the labels only to be labelled as other things, like lazy or whingy. There are always going to be negators who think they know us and our situations better than we do ourselves. So glad that you enjoyed reading my post, and hope that it can help towards you too one day accepting it is ok to not be superhuman. :-)