People may not understand how invisible illnesses disrupt our everyday lives – precisely because they're hidden. Independent dance producer Chantal Guevara explains how her invisible condition is unpredictable and how she lives with that uncertainty.
Three years ago, I learned the hard way that blood clots aren’t just a plot device. What started out as a fractured ankle resulted in heart and lung damage, and a very very long recovery time.
My mother had warned me that if I tried to force myself to resume normal life in that time, friends would assume I was all fine, and that’s what happened; even in an industry such as dance, chronic illness is not a thing.
The biggest problem has been that “I’m sick” doesn’t convey the extent of the illness or disability. It doesn’t mean having a light headache, it means physically not being capable of promptly replying to a certain person’s texts or emails. It means having to take up a bit more space on a train, however much that inconveniences other passengers.
It means having to spend a lot of time lying down, wherever I go. Once, I was having a particularly bad day, so while I was waiting for a friend at my local dance agency, someone told reception that “there was a half-dead lady lying on the sofa being ignored”. Their response? They banned lying on the sofa.
It means wanting to set an email filter to automatically delete all emails which open with “Hope you’re well.” People assume that if there’s nothing visibly wrong, then clearly there’s nothing wrong, and chronic illnesses are awkward things to be forgotten and disregarded. Friends have asked if I’m all recovered – I think I am, and then I have another relapse again. I don’t know how this works any better than they do – or indeed doctors do, apparently.
It does mean that if I take a turn for the worse, I get to have an ambulance at my door in five minutes.
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The stories we collect will form part of our Hidden Stories project, which is about exploring – as a community – the way we behave towards people with conditions and illnesses which can't be seen. Only by sharing our experiences can we begin to understand them.
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