Writing this is a big thing for me

Posted November 5, 2020

Hi, my name is Megan. I’m 30 years old and was diagnosed with hypermobile EDS (hEDS) when I was 14 years old.

I’m a barber by trade, but I had to give up my passion and my job one year ago, due to it being too physically demanding. My hips and shoulders constantly dislocate. Every step I take I can hear and feel my hip subluxing. I also have scoliosis which is putting pressure on my chest and causing two ribs to constantly dislocate.

I’m ashamed of my condition, it’s embarrassing and people don’t understand it, and so writing this is a big thing for me. It’s hard for people with our condition. When you look at me you see a normal, healthy-looking woman, but on the inside, it’s like I’m 80-years-old. I just want people to be aware that just because someone might look ok on the outside, doesn’t mean they’re ok!

As well as having the challenges of EDS, it’s also brought on a lot of sadness not being able to do things people my age can do. I’ve been on a waiting list for over a year now to get both hips somewhat repaired, and I’m waiting to see a surgeon for scoliosis surgery.

I hope that my story can help others, and assure them they aren’t alone. This is a lonely condition, and unless you know someone with it or have it yourself, it can be hard for others to comprehend. Let’s bring more awareness to EDS.

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