Living with EDS is hard, but has become increasingly so over the last 3-4 years. I got diagnosed when I was 30, and it was a relief because I felt finally listened to properly. Over the last few years the symptoms have gotten a lot worse and in some ways robbed me of the things I used to be able to do. It induces a lot of pain, both mental and physical. Anxiety and depression are high. But on the flip side you get to meet lots of people who are in the same situation, so that's a plus. Having people in your life who GET IT is really important.
For a long time I didn't feel like a "Babe With A Mobility Aid" because I looked at it negatively. I saw me having to use a stick as a weakness. I felt old, especially as my first stick was a very clinical one from the NHS. I HATED IT. I wouldn't leave the house.
Now I have sticks to match my outfits and it makes all the difference. I'm bonding with them now. They all have names: Blossom (pink with cherry blossoms), Sprinkle (purple, yet to be decorated with sprinkles), Cloudia (she's blue, with clouds on, you have to say her name with an Italian accent for it to work haha!) and my newest addition to the family is Funshine (yellow). They all have charms or plushies hanging from them because these are the things that make me happy.
Now that my outfits and sticks match, I feel more like a Babe With A Mobility Aid. And especially now that I've had modelling opportunities arise, this has given me more confidence.
EDS is a connective tissue disorder. Generally our collagen is loose and stretchy. Our symptoms vary. For example, I don't have the super stretchy outer layer of skin. My insides however are very loose and as a result of that I have frequent subluxations and dislocations. Some bruise easily... I scar very easily and form keloids every time. Some have allergic reactions, some have heart problems, some have IBS, POTS and other comorbidities. Everyone's story is DIFFERENT. For the most part, my hEDS (Hypermobile Ehlers Danlos Syndrome) has remained invisible unless I complain of the pain. Now that's not the case, and it's very obvious I have a disability. That can be really hard to adjust to, because living with an invisible illness you learn how to mask your pain very quickly because you don't want to be seen as weak. Truth is I can't remember what it feels like to NOT have pain. What I'm saying is everyone's EDS or HSD is UNIQUE. You can't compare yourself to others, or think someone can't have it because their symptoms don't match your relative's. You don't know what people are struggling with so it's best to just be kind and supportive always.
My day to day fashion is always FUN. I have a huge wig wall with many different coloured wigs, I have an abundance of pastel clothes, funky shoes and an entire corridor dedicated to my novelty bag collection. My life isn't great so I fill it with fun things to make me happy, and my fashion style does just that. I'm very much into the kawaii aesthetic, but on days when it's not practical to be fully dressed up I still love to be well coordinated!
If you're into kawaii crafts and fashion, definitely join the Sha Sha Squad over on my YouTube channel and Instagram!
