• Anon

What Living With EDS Feels Like



It's waking up in the morning and instantly being consumed with pain.

It's forcing yourself out of bed and working through your physio exercises just so that you can shower, dress and get down the stairs.

It's fearing brushing your teeth because your teeth are so wobbly you think they might fall out.

It's carefully placing each foot down on the stairs, hoping your ankle doesn't fall out but knowing that it will.

It's crutches, braces, splints, supports, pain relief, and heated items always with you just in case.

It's fainting in the supermarket, getting stuck in the car, ceasing up if you don't move enough, intense pain if you move too much and being so tired all the time.

It's learning to put your own joints back in place and finding other people who can help.

It's always eating well, exercising, taking your supplements, drinking enough water, sleeping enough every night, spending thousands on alternative therapies and mainstream healthcare and still having to listen to people suggesting that if you just tried this one thing you'd be cured.

It's listening to doctors who don't have the first clue about EDS as they belittle you and your experience. For most of us it's years of being undiagnosed and called a hyperchondriac or a drug seeker.

It's hiding your pain, your difficulties, your daily struggles because everyone is sick of hearing about it and then hearing people tell you that you're having a good day or you don't seem unwell when you're dying inside.

It's all this and more. But most of all it's choosing to live and to fight every day because we are zebras and we dazzle.