LILY, 18, has Ehlers-Danlos syndrome, which causes loose joints, stretchy skin and fragile body tissue.
Each day with EDS is different. I don’t get to choose which days my pain and fatigue allow me to go out and enjoy life, so sometimes I miss things I’ve looked forward to for months. Some days I cope with symptoms easily and accept when I need to take a break. Other days are more frustrating and the randomest things make me cry or get angry. My illness is genetic, I’ve had it my whole life, but
I was only diagnosed at 16. As people haven’t heard of EDS and they can’t see it, they don’t understand how it affects me. Even well-meaning statements like “but you don’t look sick” or “we all get tired sometimes” can be frustrating, invalidating and hurtful. When someone has an invisible illness, people usually do one of two things: doubt them or try too hard to help them. In my experience, the best way to help is to talk about how their illness affects them and how they’d like to be treated. It took a long time, and a lot of doctors, to get an explanation for why I was having all my issues. Doubt from doctors, because if a teenage girl has symptoms it must be “all in her head”, was downright traumatising. Livewire helps me stay connected to people my age, which is hard when you’ve missed a lot of school and lost touch with peers due to your illness.