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How Undiagnosed Ehlers Danlos Syndrome affected my Education

The primary school years

I never really liked school but then again, I’m not sure a lot of kids do but my reasons for not liking school were different to most kids. All my life I was struggling with undiagnosed Hypermobile Ehlers Danlos syndrome which was brushed off by doctors, physios, and nurses as ‘growing pains’ or ‘no clinical significance’, those ‘growing pains’ were actually damage to my already unstable joints from being forced to join in with PE lessons. Another reason that I didn’t really enjoy school growing up was due to the highly sought after 'Attendance Awards' that were given out every term; as many people with chronic illnesses know, a lot of our time is taken up by medical appointments or simply just being unwell and this was the case for me when I was in both primary and later secondary education so this meant that I was never one of the lucky ones that was able to receive these 'Attendance Awards' and the prizes that went with them.

The secondary school years

Secondary School was a lot trickier for me because this was when I seemed to become ‘Clumsier’ as a lot of my peers and teachers would have described me which meant that I spent a lot of time out of class with injuries, this became a reoccurring theme for me throughout my time in Secondary School so my friends and teachers got used to me wearing various Braces, Medical Boots or Having Crutches but what I wasn’t prepared for was the name calling, some of which was done by adults who definitely should have known better. I was constantly joked about by my classmates and even teachers throughout Secondary School and, at the time, I never recognised it as wrong. I spent a lot of time battling through high pain days because I’d always been told that this was ‘normal’ and had just accepted that I was going to be in pain when I walked to school from the bus or when I stood in one place for too long.

A potential diagnosis...

It wasn’t until 2021 that we started exploring the possibility of EDS. I’d gone to my Drs for a routine Asthma check when my Dr pulled me into his office and uttered those words ‘I think you might have Ehlers Danlos’. Fast forward to 14 October 2022 and I was sitting in my rheumatologist’s office. She did a complete physical exam on me and afterwards she sat me down in front of her desk and finally I got to hear the words:

‘You most definitely have Hypermobile Ehlers Danlos Syndrome’.

I’m now at university and whilst I still need to take time off for bad pain days, no one has ever made jokes about me, and my wheelchair definitely helps.

You can follow me over on Instagram: @chronicallylillie where I (very irregularly!) document my journey with multiple chronic illnesses as well as my university journey to become a primary school teacher.



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