My story – Scarlet
Hi, my name is Scarlet I am 18 and I’m a creative art student in my third year of college, and I am here to share my story with hEDS….
Since I was a toddler, I was always bumping into things and more flexible than others my age, it was only really picked up when I was around the age of 9 and I got referred to rheumatologists where I got the diagnoses of Hyper-mobile joints. My parents were worried it would affect me as I grew up, but the doctor said it wouldn’t affect me as I got older and won’t be noticeable. the only further treatment I received was an OT as I lacked in my motor skills, I struggled with holding pens properly, so I received pen grips and specialist cutlery to help me at mealtimes… I also had incorrect posture and would sit leaned, so it allowed me to sit up straight and position my feet correctly on the floor.
As I grew up things got a bit worse and my joints were starting to affect my day-to-day life, I was becoming socially aware that I was a bit “different” than my peers I would notice in physical activities that I lacked the skills they had. I would take part in cross country races, I did gymnastics, swimming, dance … but slowly all these sports stopped, and I refused to attend, looking back now I think it’s because I was becoming embarrassed that I wasn’t the same physically as my peers.
When going into high-school pain mainly started within my ankles and my clumsiness was now being pointed out by friends, high school is never usually a nice experience for many but when you have the coordination of Bambi it’s not going to be an easy ride.
I was constantly backward and forwards with mum who was walking into school holding bulks of files and papers within her arms begging for me to have extra support or dealing with me calling from the bathroom crying to be picked up to go home because yet again I was being bullied.
I would definitely say the school System failed me and it’s definitely failed many others with EDS as it is a condition which needs so much more awareness and should be trained in school because not only does it affect you physically but also mentally in a variation of different ways.
I started to know I didn’t just have “hyper-mobile joints” and i was definitely being affected by it unlike the doctor said… I got into a deep dive on google trying to search for answers and came across EDS, I read up about hyper-mobile joints being miss diagnosed and I read stories upon stories and asked family and friends what they thought about it, and we all came to the conclusion that it sounded like me. I made appointments with the GP hoping to get their approval and luckily, I did and went back to the rheumatologist which agreed with me, and I got my diagnoses, the correct one. 7 years later, it shouldn’t have been the case for my proper diagnoses to take that and to finally have answers for the way I was, but I finally did, and I immediately researched everything I needed to know in order to help myself and prepare for the future.
Every single person’s journey with EDS is different and we all have barriers that at some point in our lives we have to face. For me I know my journey has still just begun but I know through the support of websites with information and finding people online and in person that I can relate and talk to has helped me tremendously. No matter who or where you are help and support is out there. I hope through this I have inspired or even helped someone else who has EDS and through that they can help others too.