Experiencing Vision and Light
Vision is one of the senses that people with pathological fatigue often find difficult. Researcher William De Donker talked about patients who would come into his laboratory and have to turn away from his shirt because the pattern on it was too much for them.
One participant had been left with difficulties in their vision post-stroke. which they felt contributed to their fatigue. Often images would seem blurry. They explained that scanning the eyes across an image could help with the blurriness but that this was a tiring process. Dr Anna Kuppuswamy explained that when you scan an image you are constantly making small movements to try and go from one side to the other to take in all the visual information. That is how we form a picture of the world in our brains. Normally our brain does something called 'saccadic suppression'. This is when it helps you to ignore the blur because it knows that there is going to be a movement of your eyes. She explained that researchers are looking into this at the moment.
'What I'm thinking is, maybe this kind of suppression is not working as well. And your scanning of the world is actually giving you a blurry image as if the world is moving. And that is why you might feel more effortful to try and stabilise an image, which can then give rise to fatigue. They're going to start testing this more formally in an experimental setup.'
Dr Anna Kuppuswamy
If fatigue were a colour?
Artist Sofie Layton had an idea that would help her understand how sight was impacted by fatigue. She asked participants, 'If fatigue were a colour, what colour would it be?' Some chose dark and muted tones which could be expected. Others found it difficult to imagine fatigue having a colour because it is so invisible by nature. Then other responses might be surprising to you. A few participants selected overwhelmingly vibrant neon colours; those colours and tones that can assault the senses and which hold you in their grip!
'The colour I just went straight to that really inky dark night sky like that absence of colour.' Group 1 Participant
' I thought, I don't think fatigue actually has a colour. I think for a lot of people, it's invisible. Nobody can see it. People can see me limp. They can see that I can't move my right arm as well as I can use my left arm. Those are visible things. I think fatigue is invisible that for me it actually has a colour.'
Group 1 Participant
'The colour I used was lime green. I was saying it would be easy to have used black or Navy or dark brown. But for me it was it's much more shocking than that. Because it comes on so quickly. And it's so bright and sort of takes over everything. And I can't concentrate on anything else. And so for me, it had to be that sort of vivid, unrelenting colour that just wouldn't let me go.'
Group 2 Participant
How would you respond to this question? If fatigue were a colour, what colour would it be?
Feel free to share your own experience here: https://www.experiencingfatigue.org/shareyourexperience