ABOUT ME

“I am brave. I am bruise. This is who I’m meant to be… this is me.”

How does a bastard, orphan, son of a whore and Scotsman — wait… Sorry that’s Hamilton.

My name is Jess and if there is one thing I hate it’s writing ‘about me’ spaces. I know for a fact I am not the only person out there who despises things like these. It’s like trying to sell yourself and frankly I wouldn’t want to buy me… and i’m me! It’s like when someone asks you to tell everyone a ‘fun fact’ about yourself and the only thing you can think of is that one time you went scuba diving or how you can touch your thumb to your wrist, (both of which are true for me).

The best thing I’m told is to keep it simple. So here goes;

I am 24 years old year, feel like i’m much older but we’ll get to that later, and I am a BA (Hons) Acting graduate of The University of Wales Trinity Saint David. Whilst I am currently unemployed I am a member of Peterborough Mask Theatre company as an actor, set designer, assistant stage manager and lighting/sound engineer. Theatre, TV and musicals are my passion. My favourite colour is Purple, my favourite food is Chinese, I have no idea what I am doing with my life and I have EDS.

What is EDS?

“Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.

The different types of EDS are caused by faults in certain genes that make connective tissue weaker. Depending on the type of EDS, the faulty gene may have been inherited from 1 parent or both parents. Sometimes the faulty gene is not inherited, but occurs in the person for the first time. Some of the rare, severe types can be life threatening.”

https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

The most common type of EDS is type 3, also known as Hypermobile EDS, and this is the one that I was diagnosed with in December 2018. And in simple terms, my body doesn’t have the correct genetic make up for it to hold itself together. Symptoms include things such as joint hyper-mobility, loose/unstable joints that dislocate easily, super soft skin that bruises easily, chronic pain, chronic fatigue, digestive problems and dizziness (plus a million more).

Unfortunately there is no blood test that can determine whether someone has Type 3 EDS, the diagnosis is done via family history and a physical examination in which other potential causes and diagnosis’s are ruled out. I was lucky enough to have been identified by a chiropractor early on and a good doctor who listened to my concerns and agreed with me. It was because of that that not only did I get the diagnosis, but also my mum who never realised this is what she too suffered with.

As much as I have never considered myself disabled, on paper I technically am. I am one of the few lucky ones where I am still able to walk most days and can live in independence 90% of the time, but that isn’t the case for everyone. And yet there are still some days in which getting out of bed and pulling ‘people clothes’ on is the best I can do as I am too tired or it hurts too much to do anything else. These are just some of the troubles of those like me with hidden illnesses, which not only have a physical, unseen impact on the body but also a huge mental impact.

I will say now that I am not a doctor and this blog is not medically professional in anyway or contains specific advice on what to do in certain situations (if you have medical concerns please speak to a doctor). This blog is purely about my own experiences through these ailments and my life. Everyone has their own unique experiences towards the chronic illness, everyone is different. But most important this blog is for me to be able to document my experiences, my story, my day to day living and anything else that may pop into my head at the time.

Useful links:

https://www.ehlers-danlos.org/

https://www.ehlers-danlos.com/what-is-eds/

https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

%d bloggers like this: