SEDSConnective member and volunteer - Ayishah Bushara, Age 30, Sussex
Let's talk about losing a piece of you, a passion, a love! Mine was and always will be dance. I'm always falling over my own feet when I walk and yet when I dance; my feet work perfectly.
My passion for dance is not lost for good because I think I can get myself back there again, but every single time the symptoms of hypermobility Ehlers-Danlos syndromes (hEDS) starts to get the better of me and I'm forced to take some time off - it feels like I've lost that bit of me over and over again. I was diagnosed with hEDS at age 16 due to my many symptoms. I know we can find other hobbies but I think it's important to acknowledge that nothing may ever be able to fully replace your true passion, and to be honest I don't want it replaced. I'm a good dancer, and even though I won't be able to pursue it as a career. It's still a massive part of my life and I won't let that go. My mind, soul and body needs dance. Not only is dance 'my thing', it's a way that I can really lose myself and cope with the stresses of the world.
I've danced even from a toddler; I'm no good at other sports, I can sing but in no way have the confidence to pursue that, and with temporomandibular dysfunction (TMD) and reflux which often co-occurs with hEDS, being a singer is out of the question anyway. Reading is alright and TV is great for relaxation; but I don't want to spend my life relaxing - I want to live and have fun!
I have 2 young kids, one waiting for an autism diagnosis and an elderly Mum that has many care needs but I have come to learn that I can't forget myself and I deserve to have my own personal goals that benefit me.
I will dance again, once I've got my strength back, I will boss it when it I do and I probably will have to take another 8 month break again and continue the grief cycle. But I'd rather go through those cycles than not have dance at all.
It seems weird to miss something so much that isn't a person. Some may say it's not important and that health comes first but just because you don't understand the love for it, doesn't mean you should dismiss it. When I dance I'm more than 'someone with disabilities' or 'a Mum with disabilities'. I'm actually just 'Aiyshah' - in the moment I kick those disabilities in the behind and glow!
So just remember guys, it's perfectly ok to miss something you love and can't do right now, it's ok to not have a replacement for that, it's ok if you don't give it up because someone told you it's for the best and it's ok to just grief, do the thing and then grief again