LILY, 18, has Eh­lers-Dan­los syn­drome, which causes loose joints, stretchy skin and frag­ile body tis­sue.

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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.

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