Hi my name is Hollie and I’m 19 years old. I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) at age 13 after breaking my collarbone in a low impact car accident. When I originally got my diagnosis it didn’t change much for me as EDS had been part of my life but I just never had a name for it. I found it really hard being 13 to accept the fact that something was ‘wrong’ with me. Not only was this diagnosis new but I was also only after starting secondary school and I was trying to find my feet. I didn’t want to be seen as different from my peers.
My diagnosis meant I missed out on a lot of things my peers were able to do, even stuff as simple as being able to complete a full week of school. EDS caused me to suffer from chronic fatigue and multiple dislocations daily. These things combined together meant I missed a lot of school.
I was no stranger to doctors or hospitals before my diagnosis. I broke at least one bone every year of my life so you can imagine all of the hospital trips from that alone. I also have a condition called IGA nephropathy which affects my kidneys and caused me to spend a whole summer in hospital.
I have really struggled to come to terms with my diagnosis over the years. I felt as though there was nothing wrong with me because I knew there was people out there in way worse situations than me. Over the years I’ve slowly tried to come to terms with it because I can see now how it affects me. I see now that I’m not the same as all of my peers and that’s okay.
I spend most of my free time drawing, painting or writing. Creativity has always been my outlet. My fingers constantly dislocate even when I’m doing the things I love. My body gets tired and sore even if I am just sitting and painting, learning to accept my diagnosis has helped me help my body by learning to go at my own pace and take breaks when I need them.
The past year has really helped me to accept my EDS for what it is. In June 2023 I had an MPFL reconstruction on my right knee and I think this really put into perspective that I need to really start looking after myself and going at my own pace rather than trying to keep up with everyone else’s. 2024 is the year that I decided to advocate for EDS and start to post about my story in the hopes that maybe I’ll help someone who feels how I’ve felt for the last 6 years.
Currently I’m a student in UCD studying English & philosophy. I’m hoping to become a special needs teacher. My degree has been majorly impacted by my EDS, I had to take a leave of absence because of my health. I’m hoping to graduate in 2025 from my BA and then move on to my masters. Everything that has come with my EDS diagnosis has thought me to be extremely strong and resilient to all challenges that are thrown my way.