Getting A Diagnosis After 9 Years ~ EDS

I still can’t believe I finally get to share this, I had honestly given up all hope that I would ever get a diagnosis. But on the 21st of January 2020 at 11:00am I received my diagnosis! I have Hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder that effects every system of my body from my organs and brain to my joints and skin. This is because of the collagen in your body that forms the connections that holds everything together, people with EDS have faulty collagen. So it causes me to have loose and unstable joints that subluxate and sometimes dislocate. I bruise easily and my skin takes for ever to repair and often can’t heal properly. It effects my organs especially in causing issues with my stomach and heart. It also has an impact on my neurological and nervous system, which keeps my body in a constant fight or flight response and causes chronic pain and acute pain from things that wouldn’t normally hurt.

EDS is considered a rare disease and it’s a lifelong condition with no treatment or cure. My only options are to do physiotherapy to strengthen my joints to prevent dislocations. Which is very much needed since my shoulder is now dislocating in my SLEEP. Like I get I’m a naturally clutzy person but this is a whole new level of clutz!
After over 9 years of unimaginable pain, mistreatment, unknowns, judgement from society and dismissal by the medical system. I finally got the answer I had been fighting for, for so long. Getting a diagnosis is the weirdest experience because it’s this strange mix of pure happiness and sadness, all at the same time. I never thought I would celebrate finding out I have an illness but I did. I don’t think the rheumatologist fully understood what a life changing moment it was not only for me but also my family. As 3 generations of my family where accused constantly of being hypercondriacts (including myself). To be able to finally end that family stigma is something I’m incredibly grateful for and proud of. It feels like there is this huge weight lifted off my shoulders.

Taken just after I received my diagnosis

And I should be happy, I fought for this and its allowed me to finally get some closure. But at the same time it feels like a bad dream I can’t wake up from. Even when they suspected it could be EDS i was still in denial. I was going to get to the specialists and they would tell me I didn’t have it, that I would grow out of my symptoms or it would turn out to be something they could fix or cure. I wasn’t going to be sick for the rest of my life, I was going to have a “normal life”. It’s funny when you become chronically ill you have to go through a process of acceptance, of where you are at and your quality of life at this time. I thought I was ok with being sick, because when people would ask me if I could have a magic wand that would make me never have gotten sick would I use it. And my answers always no, I may hate being sick with every inch of my being but I couldn’t imagine giving up the lessons I’ve learnt, the path its lead me down and the incredible people I’ve met because of it.
When I think about the true effects my illness has had on my past and I look back at when I was younger. I remember all the people that outwardly judged me for my anxiety, without even trying to understand why I had it. Others in positions of power took advantage of that anxiety. The thought of it just makes me want to scream! Can’t you see that I’m sick, can’t you see the amount of pain I’m in thats causing that anxiety? But they couldn’t because it’s invisible and sadly most have to see something to believe it. I made myself a promise the day I got my diagnosis that I would never let anyone walk over me again, I have a voice and if my journey has taught me anything it would be to use it.

My future has suddenly changed drastically and I do get really scared! My condition is unpredictable and its comorbidities are debilitating so I have no idea whether it will become more manageable over time or continue to get worse. EDS is also genetic, It’s passed down through generations, some don’t even know they have it as the singular gene can be less active. I unfortunately found out I have the double gene which means I got it from both of my parents. Since I was little I have wanted to be a Mum one day, more than anything! Now at 17 I’m having to get my head around the fact that, I could potentially condemn a child to live with an illness that has made a large amount of my life hell.

It took a while for all of this to sink in, it wasn’t until I woke up one morning and I realized I may never wake up without being in pain or feeling sick and that was really hard. But I also remembered that I don’t ever remember a time of my life that I wasn’t in some sort of pain or feeling sick. But I still managed to live my life and experience some amazing moments. I’m excited to finally be able to let go of all the unknowns and move into this next chapter of my life with better understanding.
None of that would have been possible if it hadn’t been for my incredible Mum, who never gave up, even when everyone around us didn’t believe her. She knew something wasn’t right and fought everyday to get answers. Thank you for comforting me when the pain is just too much and helping to make the best out of each day. For basically becoming a carer, gp and every specialist necessary to educate the doctors so they could help me. You taught me what true resilience is and managed to make me laugh on the darkest days. I can’t even begin to explain how grateful I am that you are my Mum.

To Vivienne, I still remember the day I met you and your beautiful family. Before I could even say anything you guessed I had EDS and since then you’ve done everything you could to help me get a diagnosis. You made the journey to getting a diagnosis less daunting and I hold close all the amazing advice and support you have showed my Mum and I. Not only that but gaining such amazing friends as you, Sam and Casey is something I cherish everyday. You made the pain hypos, brain fog and allergic reactions seem like a normal part of everyday life and allowed me to just be me, illness and all. I thank my lucky stars we met you guys!

And to Roy who probably wont see this but I wanted to thank you anyway. You never once judged me or questioned my illness, instead you did everything you could to help me. From finding out about medications that could possibly help to getting me access to better medical care. Your kindness and support truly does mean the world.

And to anyone out there that is fighting to get a diagnosis, please know that your not alone. That your symptoms aren’t in your head and you know your body better than anyone else. Not everyone gets a diagnosis straight away and unfortunately our medical system has a long way to go in the treatment of chronically ill patients. But keep fighting, take life one day at a time, make the best out of each day, advocate for yourself and your needs. And in case you haven’t heard it lately, I believe in you and I believe you xx

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