Dear Ehlers-Danlos Syndrome
Dear Ehlers-Danlos Syndrome,
I thought you had me.
I really did. You gradually crept uninvited into my life, OUR lives. You took up my time, my energy, and hid from all my doctors. You made them think there was something else the matter. You only showed them one thing; you didn’t let all the things out at the same time so nobody could finish your pitiful little jigsaw puzzle.
You make me hurt, fatigued, foggy in my head. You are mostly invisible so that people don’t know you’re here. And that’s not fair. It’s not fair because they don’t see what you do to me inside. How you tamper with my systems; ALL of them.
I know you’re here to stay, but I want to tell you that you haven’t actually got me at all.
You see, I’ve done my understanding. I know my medical stuff now. I’ve finished processing and grieving. I’m coming out the other side. I’m stronger than I ever thought I was. I’m positive. I’m smiling.
We’re not scared of you anymore. My husband, my daughters, my cardiologist, my Geneticist, my physio team, my pain therapist – they all have my back; our backs. And if you DO decide that you want my girls as well, then you’re just greedy. Even if you want just one of them…. If you do, we’ll be Zebras together. And you know what a group of Zebras is? A Dazzle. And that’s what I’ve decided to do. DAZZLE. Starting yesterday, with my Brave New Haircut and today, by telling everyone about you.
You think you’re rare, but if everyone knew more about you, maybe The Others could join the dazzle quicker.
It’s Rare Diseases Day.
We’re coming for you, EDS.
I thought you had me.
I really did. You gradually crept uninvited into my life, OUR lives. You took up my time, my energy, and hid from all my doctors. You made them think there was something else the matter. You only showed them one thing; you didn’t let all the things out at the same time so nobody could finish your pitiful little jigsaw puzzle. You make me hurt, fatigued, foggy in my head. You are mostly invisible so that people don’t know you’re here. And that’s not fair. It’s not fair because they don’t see what you do to me inside. How you tamper with my systems; ALL of them.
I know you’re here to stay, but I want to tell you that you haven’t actually got me at all.
You see, I’ve done my understanding. I know my medical stuff now. I’ve finished processing and grieving. I’m coming out the other side. I’m stronger than I ever thought I was. I’m positive. I’m smiling.
We’re not scared of you anymore. My husband, my daughters, my cardiologist, my Geneticist, my physio team, my pain therapist – they all have my back; our backs. And if you DO decide that you want my girls as well, then you’re just greedy. Even if you want just one of them…. If you do, we’ll be Zebras together. And you know what a group of Zebras is? A Dazzle. And that’s what I’ve decided to do. DAZZLE. Starting yesterday, with my Brave New Haircut and today, by telling everyone about you.
You think you’re rare, but if everyone knew more about you, maybe The Others could join the dazzle quicker.
It’s Rare Diseases Day.
We’re coming for you, EDS.
I’m Liz. I’m a 44-year-old Mum to two daughters, my gorgeous Flatcoated Retriever and wife to a frequently travelling husband. I’m British and live in Surrey, England. I was diagnosed with Hypermobile Ehlers-Danlos Syndrome in November 2017 after seeing various ‘confused’ practitioners and being given a couple of misdiagnoses.
I also suffer from Dysautonomia. Getting my diagnosis brought with it an array of feelings and emotions but explained many ‘symptoms’ that I had been experiencing my whole life. I’m in a good, positive place right now and am happy to be here to share my experiences with you.
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I don’t use facebook or social media so don’t have a platform to say how amazing I think my wife is! Incredibly proud of you today. You’ve been able to articulate, in such a beautiful yet honest way, a very difficult and occasionally distressing time. Now we know what it is we can get on with dealing with it together. You have incredible strength so I am filled with confidence that we will. All my Love
Thank you, my darling! Liz xx
Hi Liz
I saw you on tv but have been reading about your health condition. It must be very frightening for you knowing the possible outcome of the condition and my heart goes out to you. You appear a strong person to hear your story on tv and now from reading about your condition – my heartfelt admiration and hope you stay well and healthy as long as possible for you – and your family 🙂
Ps my late wife had Marian syndrome
Hi Liz
Seeing and listening to you on breakfast tv, as well as reading about your two health conditions, I think you are a very strong and resilient lady and hope you enjoy a happy healthy life. Best wishes ❤️