What it's like living with EDS:
Living with hEDS definitely has its challenges. I have loose unstable joints which cause dislocations, subluxations and swelling around my joints on a daily basis. I have POTS, IBS and my eyes became a lot weaker over time so I now have glasses permanently. I bruise like an absolute peach most days and there are some days where my body feels like it's on fire and I can't move.
Being a babe with a mobility aid:
Becoming a babe with a mobility aid was a long journey of acceptance for me. I was diagnosed in late 2014 and kept everything hidden from the public and social media until late 2019. For the longest time I purposely went without my walking stick and basic joint supports when I needed them in public. I even kept them hidden from social media and work. I felt weak and very awkward when people would stare at "the young disabled person". I have combined ADHD as well so people making me feel weak affected that negatively too. Since covering my walking stick with quirky mushroom stickers however, I've definitely felt a little more confident knowing I've made my mobility aid personal to me!
What I want people to understand about EDS and what it's like living with an invisible Disability:
I want people to understand that although every case of EDS is incredibly different and has so many variations, it is still always there and still always affecting my life on the daily. However I know my limitations and I shouldn't be treated like I SHOULD be helpless simply because I'm disabled. I've had people say to me "be careful" and "just get your partner to do it" when I've told them my daily activities for the day that I'm actually looking forward to. I've even had other disabled people make me feel guilty and try talking me into "giving up" doing certain things, simply because my disability is invisible and in their eyes, that means I'm clearly not struggling as bad as others but I should be because I'm disabled. Its almost as if it's not fair to call myself disabled because I don't fit the "typical disabled look" for them. This can be super frustrating because they don't realise I'm actually missing out on a lot. I even gave up my dream job of being a life guard because of my EDS posing a risk and that still hurts me a lot because it was my Dad's first job and he passed away when I was 16. I wanted to be just like him because he was my best friend too! Only my partner truly sees my day to day and he understands my pain and frustration. I have had people huff and yell at me for using things like priority seats or lifts when I'm without my walking stick too and it can be really upsetting. Especially when I have ADHD too. It's like the old saying goes, just because you can't see it, doesn't mean it isn't real or not there. If someone is using lift or a priority seat for example and you can't see their disability, just trust it is there and it is valid.
My Day to day fashion:
Well due to the pandemic, I am now the proud owner of what feels like 1000 loungewear outfits and being comfortable is incredibly important because I'm either wearing a disability aid or I have some stuffed into my bag just in case! But on the days I go out, I tend to try and stay comfy too. Whilst I'm still trying to be 100% confident with my disabled body, I've given up wearing a lot of things I love out of lack of confidence. However I LOVE quirky and bright clothes! Dungarees are my ultimate comfort and I always feel super confident in them no matter what! I've worn them for years and honestly I'm convinced I'll probably even walk down the aisle in a pair at this point!
Where to find me:
You can find me on my Instagram @maplemoonchild where I talk a lot about my EDS through posts and stories. I share my daily life living with EDS and I'm always happy to answer questions regarding living with EDS to the best of my ability! I also chat about mental health, cottagecore goodies, 2am baking and my little emotional support Bunny who has changed my life!
