Broken Barbie: Blogging with Disability

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I was inspired to write this post because it is Blogging Against Disablism Day, and The F Word tweeted an old blog post from Amy Clare http://www.thefword.org.uk/blog/2010/05/blogging_agains which I think speaks about the issue beautifully.

“Most long-term medical conditions also involve chronic fatigue, which is exacerbated by nearly all activities. The fatigue is qualitatively different from ‘normal’ tiredness and is only slightly lessened, not eliminated, by sleep or rest. The spoon theory describes how this works in a very eloquent way. Any activity, including blogging, is likely to physically tire a disabled or chronically ill person much faster than it would an able-bodied, healthy person. Moreover, the consequences of ‘pushing through’ this tiredness can be very serious for symptoms.

Debilitating fatigue, like disability itself, is not always physical; many chronically ill people are familiar with the dreaded ‘brain fog’, characterised by feeling sleepy, being unable to concentrate or make decisions, having memory lapses, and so on. The activities involved in blogging – reading and researching, thinking around a topic and formulating arguments, writing and editing, formatting and publishing, moderating comments, thinking up and writing replies – all require attention and concentration, and keeping the brain fog sufficiently at bay to do these things is always a challenge, and sometimes impossible. Mental exhaustion is always looming, and can come on very suddenly, with consequences often more unpleasant than their physical counterparts”.

(Amy Clare, 2010).

I know all too well if you look ‘well’ people have a hard time even trying to understand what is wrong with you. They throw in “I’m tired too”, “You don’t look sick” “Well how did you do x, y and z then”? It is frustrating. If an illness/ disability/ condition isn’t visible, many people don’t think it exists.

I have to pace everything out. I am seeing a friend for dinner tonight for example, so tomorrow morning I will feel sore and exhausted, so tomorrow night I can’t do anything. If I have a sociable weekend, the next weekend I am recovering. So people who see me tagged in facebook pictures or see me out, may think “there’s nothing wrong with her” because they don’t see the aftermath, or know that I break things into little blocks, see friends for a few hours then leave. I joke that I am Cinderella, and I have to leave early. I would love to holiday with friends, but it wouldn’t be fair on them. I have to choose what I can do in work, study and social life, and weigh up the pros and cons. Sometimes I choose to ‘boom and bust’ for example if a friend is home for the weekend, and I know I am over-exerting myself, but I really want to spend time with them.

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A great way of explaining conditions that gave you chronic fatigue, is The Spoon Theory by Christine Miserandino http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/. I only have so many spoons each day, so many little pots of energy. Sometimes I choose to use them on one or two things, and then they are all used up.

A common myth is that people with invisible disabilties are lazy or looking for excuses. I am a hyperactive person whose mind is constantly on overdrive, who would love nothing more than to be active 24/7. I always get my work done, always submit things before they are due, because I work to my schedule. I don’t keep 9-5 hours though, sometimes I have brain fog all day then only ‘wake up’ at night.

I speak with many people with conditions such as Myalgic Encephalopathy and Fibromyalgia, not to mention hosts of people with mental health issues and other unseen conditions, and most tell me not to ‘broadcast’ it. It does worry me if I will be seen as employable or not if and when I complete my PhD. I would ideally want a part time post or full time flexi working, but ultimately I know I will have to make my own opportunities and probably be self-employed.

The worry is all the ‘extras’ you are supposed to do… the conferences are a bug bear at the moment. I want to attend as many relevant ones as I can, but they really take it out of me, and use up a lot of my ‘spoons’ for the next day. Often people don’t consider how tiring it will be, because to them, it isn’t, it is ‘normal’.

I would love for people to have empathy for difference, and possibly even a little understanding.

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