Living with the less obvious

Student Abigail Stafford reflects on being a young person living with a condition which is not evident on the surface and wishes that people would challenge their own assumptions sometimes

How many of you have heard of Ehlers-Danlos Syndrome (EDS)? My guess is not many, maybe because in many cases it is an invisible disability. I hadn’t heard of it until I was diagnosed with the hypermobility form of it in the summer of 2010 at the age of 16, after nine years of aching pain in my legs and joints, endless fatigue and many misdiagnoses. EDS is currently an incurable hereditary condition. But it is a physically invisible condition and so we look “normal”.

Having an invisible disability as a young person you encounter many prejudices and just because our disability cannot be seen, unfortunately doesn’t mean that it ceases to exist.

At school I was very sporty but as my condition worsened and my doctor encouraged me to sit out of gym class my teachers became somewhat confused. I had a doctor’s note explaining my absence, but when asked to show them my “injured” knee or elbow everything looked “normal” to them. There was no cast or bruising present, so surely there was nothing wrong with me? They reluctantly accepted my “excuse” but they still couldn’t comprehend why I was unable to participate. Sitting amongst the kids with broken arms and sprained swollen ankles, I looked “fine”.

Another example of discrimination that I have encountered a great deal is people’s response after explaining to them why you have extra time and rest breaks during exams. There are two types of response, either “you’re so lucky I wish I had extra time” or “Oh your ‘joint pain’, that’s a good excuse do you think it’ll work for me?”, and they assume that the chance of my hand joints ceasing up resulting in me not being able to write is in actual fact a myth.

If you have an invisible disability the majority of times your friends are a great support. But sometimes it even confuses them when you say you can’t come out for a night out because you’re in so much pain. After all you did look “fine” when they saw you earlier.

Another example is disabled parking. If a person with an invisible disability was to pull up into a disabled bay they’d receive countless frowns or confused facial expressions from the general public, as if to say “you can’t park there, you’re not disabled”. Even after showing your disabled badge people would still look at you funny as you leave the car because to them and to everyone around you do look young and healthy.

Having an invisible condition has definitely taught me that just because there isn’t always a scar from surgery, a cast or crutches from a broken ankle or a wheelchair doesn’t mean that a person isn’t disabled.

• Visit Abigail’s website: hideandseekdisabilities.blogspot.com