Invisible Illnesses and the Spoon Theory 101

TITLE INVISIBLE ILLNESS

by emily didodo

1-of-52-of-53-of-54-of-55-of-5
[image description: a series of 5 pixel pictures of 5 spoons, with one extra spoon depleted each time]

Invisible Illnesses

An invisible illness or disability is any illness that isn’t immediately noticeable, and is often characterised by the phrase: But you don’t look sick!

There are hundreds of chronic illnesses and disabilities that are invisible, and yes, MENTAL ILLNESSES COUNT!

As we don’t “look” disabled it can be difficult to openly identify as such, and many of us encounter problems on this level. For example, some may experience constant thoughts that we aren’t “disabled enough” or somehow don’t count, essentially that we’re overreacting and shouldn’t need to take disabled seats on public transport, and the judgemental looks from others are something that we just have to put up with.

Due to a general lack of awareness regarding invisible illnesses, many people can remain undiagnosed, or just not know that we are “allowed” to identify as disabled and that particular illnesses are officially recognised as disabilities, which means we are entitled to support from the University and our respective colleges.

If you have any kind of long term/chronic/recurring/mental illness, get in touch with your Student Support in College for a referral to the DAS who can put in place reasonable adjustments for you and see if you’re eligible for the DSA.

Allies, if someone comes out to you as disabled who you don’t think “looks” disabled, please don’t point this out or look shocked etc. It’s very unhelpful. It takes many people a lot of time to feel like they can identify as disabled and come to terms with their illness by themselves, let alone disclose it to a friend. This is a very brave and important step. Appreciate that, and appreciate the fact that your friend has chosen to include you.

IMAGE DESCRIPTION: An illustration of two crossed silver spoons on a lilac check background, with the words “0 Spoons” written in a translucent white between the spoons

Often, when we ask for help for seemingly little and insignificant things it can lead to quite demoralising feelings of inadequacy. Disabilities can often take away our agency and sense of independence. However, while we may need help with some things, we don’t need help with everything and need our friends to strike a balance between being helpful and being respectful, without being patronising.

Another aspect of this is that, seeing as our disabilities are invisible, we may not be believed and labelled as exaggerating the truth, overreacting, getting “too emotional” and, of course, attention seeking. This is so hard to navigate when we ask for help. It takes a lot of courage to ask.

The Spoon Theory

An analogy that Christine Miserandino used when having dinner out with her friend, to try to explain what it’s like to live with an invisible disability, Lupus, in her case (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/). She grabbed the first ‘props’ she could find to help illustrate her point, and these were spoons. The concept was that each spoon was a unit of energy (and the size, value, number of spoons differs for everyone) and that every task she undertook in a day, including getting dressed, showering, having breakfast, cost a spoon. She only had a limited number of spoons available and once they were gone- they were gone, there was nothing left to do but rest and start again tomorrow, even if it’s the middle of the day, even if you have a million and one things left to do, even if you haven’t even had dinner yet.

Living with a disability of any kind (be it visible or invisible) means that we constantly have to make choices and prioritise certain tasks over others in order to make sure we can get through the day and stay as healthy as possible.

People who identify with this analogy are called Spoonies, and the spoon is our symbol.

Anyone with a disability (with or without an official diagnosis, be it visible or invisible) can identify as a Spoonie – disabilities are hard work!

How to be an Ally 

1. Offer to help. Don’t expect or assume we need help with everything, but please don’t make it so we have to ask all the time either.

2. Watch your language. Many terms that are often used in everyday speech is offensive. Please listen when we call you out and do NOT argue. (For more information on the importance of eradicating ableist language see: http://www.mmonjejr.com/2014/02/deconstructing-stupid.html?m=1)

3. Be accommodating and flexible with plans. Disabilities are very unpredictable so don’t be offended if we have to cancel at the last minute (multiple times).

4. Appreciate the fact that when we do get to spend time with you, it’s because you’re pretty special- we’re giving you one of our spoons.

5. Read up! Educate yourself on disability related issues- WomCam’s Handbook Disability 101 is a great resource with lots and lots of interesting articles (https://womcamhandbook.wordpress.com/disabled-women-101/)



Edited by Sam Pugh

0 Spoons’ illustration by Luke – you can see more of his art at http://takoto.co.uk

Spoon Meter Pixel Graphics by Livvy – http://slightly-oblivvyous.tumblr.com/

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