Posted in Archive, September 2015

The Ballet of I’m Fine

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I’m very aware that today’s blog post may come across as me being grumpy, I assure you I’m not! I’m quiet cheery really. However I want to discuss a certain topic that is often glossed over when it comes to chronic illness. I like to refer to it as the Ballet of I’m Fine. We sufferers are experts in the dance, but it is one that we resent pirouetting to with a passion. Too often I see across the social media platforms people airing their feelings at having being cast in this ballet once again. But what else are they to do? Far too often we are acutely aware of people not wanting to know if we are anything but fine. It does not matter to them if our limbs are hideously distorted due to spasms, if our speech is slurred and our sight impaired. They are willing to blindly over look what they can see in front of them, as long as we dance the same old dance.

Well, why should we?! Let’s be honest here people, my ballet shoes are hardly ever worn, I air my illness through my blog. Yes I wish I didn’t have my conditions, but I do and I’m doing my best to raise awareness and carry on with life. So please excuse me if I retire from the Ballet of I’m Fine all together. I have been guilty of smoothing over my illness before to people I know would rather not hear about it. But enough is enough, the dancing shoes are going in the bin.

Chronic illness is not something to be ashamed off. We should not be living in the shadows with life passing by. So we are slightly different, we are unique. That simply makes us interesting. Instead of staring at me in the street, I would much rather you politely inquired as to what was wrong. I would love the chance to educate more people on the condition.

To you folk who care enough to truly listen to how we are holding up, you don’t know how amazing you are!

Author:

I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything

5 thoughts on “The Ballet of I’m Fine

    1. dystoniaandme – Tring, Hertfordshire, – I'm 27 years old, a mother, author, partner and spoonie. I suffer from Dystonia,POTS, EDS, Osteoarthritis and Lyme Disease. I have set up my blog to help spread awareness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia and chronic illness journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything
      dystoniaandme says:

      Hi Hadleybartlett,
      Thanks for your lovely comment. I’m glad you enjoyed reading my post!
      🙂

      Becca
      x

  1. There is a difference between British people and people from other parts of Europe when they ask you how you are or if you are okay. Some nations actually only ask when they really want to know and care. It isn’t just a passing comment. That’s not a critique of the British, it’s just to say how much it has become a throw away greeting. (Careful though the French use `ca va?` like the British.) Good luck with the start to your studies x

  2. I think it’s more a case of apathy or curiosity. It’s a massive generalization but the majority of people don’t care if someone is ‘okay’ or not; it is just a platitude. Personally speaking, I wouldn’t want anyone to ask me what’s wrong with my neck because, quite frankly, it’s none of their business. If I were to go up to someone random and ask them why they are wearing a t-shirt instead of a jumper, they would either ignore me or tell me to f**k off. I completely understand where you are coming from and you’re right; no one should be ashamed of being ‘different.’ However, that which makes us so is not a license for ‘normal’ people to impinge on our privacy by asking questions they would not even think to ask if our symptoms were less prominent.

  3. Dystonia Muse – I'm a friend, daughter, sister, creative mind, honorary auntie, fan of the quantum mechanical, hopefully one-day spouse, now also health care advocate, here to share my life-journey with the neurological movement disorder, Dystonia, which began with a "mis-step" when I was 8-1/2. Though Dystonia may have staged a coup over certain body parts, my heart and soul remain firmly my own. I invite you to join me on my quest to find the comedic lurking in this chronic epic!
    Dystonia Muse says:

    Rebecca, You are doing a fabulous job of raising awareness and spreading understanding of dystonia. I’ll take that over “I’m Fine” any day! xxx -Pamela-

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