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Disability Doesn't Follow a Blueprint

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Here’s a question — would you know if you walked past a disabled person in the street? How would you know? I’m not sure any of us would know most of the time.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

If you’re living with a chronic illness or invisible disability, how do people know when they walk past you? I have Ehlers-Danlos syndrome, but I look absolutely fine most of the time. If I’ve run out of spoons, I may look tired, but that could apply to anyone. If my lungs are flaring up, I might be coughing and looking pale. But doesn’t everyone in the colder weather? Do I have to be hospitalized again before society acknowledges I am sick?

This is the issue people with chronic illness deal with every day. We may have multiple co-morbidities that aren’t visible. We may be entitled to a disabled parking space and yet we get shouted at for parking there. People won’t necessarily offer us a seat on public transport; why would they? We just don’t look sick enough. The more we talk about this, the stronger we become. Many people simply don’t realize conditions like EDS exist. We’re used to seeing wheelchairs, crutches and canes — that equals a disability. Society pigeonholes “disabled” and “not disabled” and there’s nothing in between. We’re given a label and if the label doesn’t suit, that’s a problem.

It’s time this stops. I hear stories of people being criticized online by anonymous bullies or confronted face to face.  People get accused of abusing the system or pretending to be sick just to get a parking space. It sounds ridiculous, but it’s happening.

We must continue to bring awareness, to support each other and help society to recognize we don’t fit a blueprint. We mustn’t give up – our voice is the only way we can spread this message and stop the bullying of people living with invisible illness. Together we are stronger.  #EndBullying

Getty image by Michael Burrell.

Originally published: October 15, 2018
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