EDS Type 3: Living and Learning

I wrote this post for my universities blog a little while ago to raise awareness for Don't-Dis-My-Ability. I wanted to repost it as I am always looking to raise awareness about this relatively unknown and unresearched condition, so here goes:

I’m a second year Creative Writing student and I also work part time for Wimbledon BookFest and Standen Literary Agency. Though being able to work and write is great, there’s a lot I can’t do. I don’t go out often, I sometimes miss my lectures and I don’t get involved in a lot of campus events. But because my illness is invisible and because I ‘don’t look sick’, I’m judged and misunderstood a lot of the time by people.

I’ve been suffering from Ehlers Danlos Syndrome Type 3 – also know as Joint Hypermobility – since my second year of A Level study. Hypermobility is a connective tissue disorder that comes from having too much collagen in your muscles and organs so they overstretch, lack stability and cause multiple issues in a person’s body. Because of this I also suffer from Chronic Fatigue Syndrome, reoccurring migraines and slight IBS. I therefore don’t really know what it’s like to not wake up exhausted and in pain.

People think that being hypermobile is about being double jointed. A lot of dancers and gymnastics are hypermobile, which is easily recognised in the way they manipulate their bodies. I, however, managed to permanently damage my upper back, shoulders, ribs and spine just by studying for my exams.
EDS is highly misdiagnosed by doctors. They’re not very well versed in the condition and commonly pass the problems off as a regular bad back or poor posture because patients can touch their toes or twist their torsos. I want to change this. I want to help educate people on the severity of invisible illnesses.This form of EDS may not literally affect people’s life expectancy, unlike EDS Type 1, but it does sometimes made it unbearable to live.

My condition has worsened since I was 17.  My rotator cuffs in my shoulders and the muscles in my neck have been so permanently damaged that I lose feeling in my hands and arms regularly. My ribs move to places they aren’t supposed – to the point of dislocation – and lead to severe heart attack type chest pain. The pain that I suffer from in my back and spine can only be dulled by Diazepam, which is a sedative. My illness is incurable and later in life it can lead to daily dislocations, wheelchair use and replacement surgery.

Everyday of my life is planned, starting from the moment I wake up. Christine Miserandino invented “The Spoon Theory” when talking about chronic illness; for example a sick person has a handful of spoons and you only have so many for that day and every single action takes away a spoon from you. Carrying a bag, shaving my legs, straightening my hair, sitting at a desk – each of these can take spoons away so that I can’t make dinner that day or stay up and write an essay or go and see my friends for drinks. It makes me scared to do a lot of things; I have planned things and bailed at the last minute because I’m afraid that I’ll be in so much pain and no one will understand or I won’t be able to function for the next week because my brain will be too fogged or I’ll have used all my ‘spoons’ and therefore won’t be good company for others. It does make it difficult to get out of bed some days.

But I don’t let my illness run my life entirely. I’ve moved away from home and came to London to study Creative Writing. I moved in with my boyfriend of almost three years now. I’ve almost been picked up by a Literary Agent twice for my own writing. Though a fulltime job may be too much for me right now, I plan to become a writer, agent or publisher in spite of it.  At 21 I still rely on the people around me to hold me up – sometimes literally – but I will have children and I will live with my condition.

I want to show others that a chronic condition doesn’t have to ruin you, just like my mum showed me after she was diagnosed with an incurable kidney disease a few years ago. She is the bravest, most wonderful person I know and I want to inspire my children like she has inspired me.

I'm lucky to have found a good physiotherapist up here in London, but not everybody has that luxery - I know I didn't for the first few years of my illness. A lot of people suffer in silence or are misunderstood for years in a many chronic, invisible illnesses. There's little research surrounding EDS and a lot of confusion. After reading this mammoth post, just reposting on your Facebook wall on any social media site can help more people than you'd know.  

Remember: don’t-dis-my-ability or anyone elses. No one is normal but some people are a little more unique than they look on the outside.

Another Year, Another Post

It's been a while since I wrote a post, but another year has passed and I feel that some reflection is needed.

I finished my second year of university! Having thought not so long ago that I wasn't even going to bother to come and then getting chronically ill, I am surprised and proud to say I have passed yet another year with a First. It's not been easy - tackling assignments and staff alongside being ill a lot of the time, but I'm proud of myself, the work I've achieved and the wonderful and supportive friends I've made.

The things I've learnt here about writing has just grown over the two years. I can see the refinement that has developed in my work and as a stubborn 19 year old who thought there wasn't that much that I could be taught, I have been proven well and truly wrong. 

This year I've had a lot of ups and downs with my health. Finally being recognised as having an incapaciating illness by student finance and recieving equipment and support has been incredible. To at last have my condition recognised, understood and respected is a massive step away from being told by doctors that I'm overreacting and overexaggerating.
The downside is the effects. I still struggle to go out a lot, to do things with friends, to do things I want to and have the normal life of a 21 year old. EDS III is a full on condition that affects more than just my muscles and joints. Although my illness has lead to me being left out of events, to lots of tears and to reevaluating some parts of my life, I really have learnt who my real family are. My parents, who have been unwavering in their support and understanding alongside my siblings and my incredible boyfriend, and my real friends, who I know will love me no matter what happens. I feel like that's one of the most important things I've learnt this year.

Despite my health one thing I've never done is give up on my passions. This month I finished my latest novel which has now been printed for editing before I send it off to agents to try and get it published. Even though I've been told countless times by my physiotherapist that I shouldn't be sitting at a desk for long periods and that Creative Writing is not exactly a great career path for someone with my condition, I have persevered despite it and I'm proud of myself for that.
I've also embarked on two new jobs; working at the Wimbledon BookFest and at the Standen Literary Agency/Three Hares Publishing. Both of these have been hugely educational, allowing me to witness young writers coming to life - both adults and children alike - and have given me the opportunity to see the other side of the coin, opening up my career prospects greatly.

Year Two has been something to remember - from discussing the horrors of the Fifty Shades writing in my Fiction class to dislocating my rib.

But I know that my Third Year can only bring great and stressful with some amazing people. Bring it on.

Crossing Off Year One

It's now the beginning of May and I have officially handed in all of my assignments and finished my first year of university.

It's gone incredibly quick. It barely feels like anytime has passed since I moved into my halls room and unpacked all my stuff, unable to fathom where exactly I was going to put it all.

I came to university because I had to. I intended to go straight into a job and work myself up in the industry. However, what I discovered was that to get into publishing, you had to have a degree just to start at the bottom. So here is where I've ended up. And, honestly, I'm so glad I did.

I've learnt so much about writing and though I've been doing it since I was ten, I've realised there's so much more too it. Learning about the small details of writing that I rarely think about when I'm penning a novel has led my writing to improve incredibly. Being aware of the most obvious and simple things is sometimes all it takes.
And I've learnt to love so many new avenues of writing. Journalism was never something I was interested in pursuing but a module this semester has led me to respect and experiment with the art and I've learnt that I'm not as bad at that style of writing as I thought I would be.

I chose London as my city to study in because of its connections. Look up most publishers and literary agents and you will find their offices in and around central London. It's also a wonderful city to experience and discover and when I could no longer stand sitting in my halls room, it was a wonderful place to escape to.

In April I was offered a two week placement at Random House publicity and I adored being able to experience a publishing house. To work in a place I plan to apply for when I leave university was incredible and I advice anyone who has a passion for books or writing to go and give it a chance. It doesn't cost anything but two weeks of your time and you'll quickly learn whether you want to leave after a day or curl up beneath a pile of books and work there forever.
My placement helped me to remember what I was here for. To get into publishing you need at least three work experience's on your CV and I wanted to start early, but I had gotten wrapped up in deadlines, tutorials and writing like everyone else wanted me too. Random House showed me what I was stressing about would come to mean something in the end.


Now, let's talk about my flatmates. Moving into halls I was worried. I was older, having taken a gap year, and I didn't drink. I assumed that the 18 year old's I was sharing with would instantly hate me. However what I came to discover was an incredible set of friends. For the last year I haven't stopped laughing. I've met some amazing people and learnt so much about different cultures and backgrounds and even though its been hard sometimes, I will never regret the experience.
Some of the people I've shared a flat with for the last year will be my friends for life. I know a lot of people say that about friends they made whilst in education, but I genuinely feel like we've grown so close that I will always want them over for tea and a gossip. I love them and they're like sisters to me now, and you don't just forget your siblings. No matter how much you want to kill them sometimes.

My first year has been eventful. It's been a lot of up's and down's with people and places but I've come through it the other side. I couldn't have done any of it without the Other Half's support and as we come up to celebrating our two year anniversary, I know that I couldn't be happier.

So, let me just say - Bring It On Year Two.

Into the Heart of Publishing I Went

Everyone has this fantastical idea of what publishing is. 

A busy office with piles of paper everywhere. A buzzing atmosphere where it's books books books. 

The truth is it's not like that at all.

I started off my publicity work experience at the Penguin Random House group trying to work out the travel system of London.
As most of the people who read this blog know, I am the least coordinated or travel conscious person around, so tube systems and train times are not my forte.

However, going to work every morning, rushing for the tube and getting annoyed with the slow walkers and the barging businessmen made me feel like a true Londoner.

When you walk into the Random House offices you are met by very fun red swivel chairs and a receptionist who is never off the phone. That's where the glamour ends, I'm afraid.

The offices themselves look like any other offices; desk, chair, computer, paperwork. Apart from the shelves and stacks of books that rest against every wall and get in everyone's way.

When I thought of publishing I thought of author events and meetings about books and being the first person to see the next big book cover. However what I failed to remember was that I was in fact there for only a two week work experience placement and therefore unimportant.

But don't fear, I have not turned my back on publishing. In fact, I loved almost every minute of being the publicity assistants lackey. I got to make Showcards that would be put up in bookshops across the country and Press Releases that would be sent to every big newspaper and magazine around.

Everyday I listened to the assistants and the publicists on the phone to travel companies, booking Eurostars and hotels and talking to authors about the gritty details of their books so they could organise appropriate interviews.

And it just gave me the motivation to want to be that person. The one calling the author or going on business trips and book tours with them, or being the author themselves, being asked the in-depth details about my book. It ignited the passion and motivation within me to jump up the gear, to do something I really want.

By the end of the placement I realised that publicity was maybe not my avenue. I want to be connected with the author and the book so much that I feel like its my child as well as theirs. That's why I've made the decision to try and pursue a career in editorial, and in particular children's.

But I would not have given up that experience for the world. Those two weeks were more important than I can express. It will help me get a job in the future, it has motivated me to do better, and it has taught me invaluable information. I recommend that anyone interested in the industry should apply.

Not to mention all the free books I got given at the end of it.

Ticking the Rejection Box

Every great writer is a reject.

JK Rowling got rejected from every publishing house name before Bloomsbury took her. The Da Vinci Code, The Chronicles of Narnia, even Dr Suess where all rejected a number of times before they finally found the right agent or publisher. In fact, all the books you can recognise in the photo to the right have been rejected.


If you write and aim to publish that writing to a public audience, then rejection is inevitable. Every writer or publisher will tell you exactly that. But no matter how many times you tell yourself you'll be okay with that, that you understand its part of the business, it still hurts when it happens.

At first you turn your nose up at the rejection, disagreeing with every comment on your work and convincing yourself that you were just too good for that agent. Then the tears come. The 'I'm a terrible writer and I should give up now' wails.

And then you take a couple of days. You go over the feedback that agent may have given you and you really think about it. About why this could have affected their inevitable choice and how you can fix it.

Through my experience I decided to take every criticism, note them down and then think of ways to remove the problem from the story - whether that be adding to word count with more scenes or removing the subplot or character completely. I mapped every chapter and every characters appearance on my Halls bedroom wall and found that I could now recognise where I'd gone wrong - something I couldn't see before.

When it comes to your own writing you're usually blind. Every single word is perfect and the completed manuscript is your treasured child that, when its beaten down, you feel every bruise too. But there are two choices - two solutions.

Either learn to look at your work subjectively and become a hard critic. Read through your work with new eyes and be tough with your cuts and edits. Not many have the heart or ability to do this successfully.
Or, find a critique partner or group. Many published writers recommend joining one of these groups if you look on their FAQ pages, but if you can't find one in your area or one that doesn't cost, turn to a friend or family member. If they're interested in the genre they may be interested in being your first reader - and possibly having a mention in the acknowledgements. Even a classmate can be helpful. If they're a good person they'll be honest with you when you ask.

The Rejection box is a painful one to tick but its necessary for every writers journey. And most of the time those rejection emails are what make you a better, stronger writer.

Spring Begins with Controversy

Every university is filled with societies; the Norwegian society, the LGBT society, the film society. But the drama society at Roehampton, known to the students as the Roehampton Players, have been the centre of attention on campus recently.

They decided to shake off the winter chills with their production of 'Spring Awakening'. It was their first time producing the musical and taking into consideration their sold-out shows of 'Guys and Dolls' and 'Rent' over the past few years, the show was expected to be successful.

I wanted to make this blog post because 'Spring Awakening' isn't your usual classic fun and bouncy musical. It's a controversial German play that was written by Frank Wedekind and adapted into a rock and roll musical for Broadway by Duncan Sheik and Steven Satar in 2006. It tackles the themes of teenage sexuality, abuse and suicide, which caused it to be banned in Germany and vastly censored in the UK when it was first released.

This type of play could have caused many issues for the Players, which led to my interest to write about it for the Journalism module on my course and in telling you all about it on this blog. 

The Players are no strangers to controversy. Last year they decided to produce 'Rent' which explores sexuality as well as drug abuse, so the campus already had a good idea what they were walking into.

But when I entered the campus theatre last night and the lights went down my stomach flipped. I'm close friends with the Vice President of the society and I had interviewed various members of the cast for my Journalism piece, so I felt a deep connection to the play already. However, even I didn't know how it would be portrayed on the stage.

When the lights came back on I stood from my seat and clapped until my hands hurt. There were tears in my eyes after the emotional ending and I was proud of the society for producing such a daring play with such confidence.

For my Journalism assignment I interviewed Abbie Mccrone, the lead actress in the play and the President of the society, where she said: ‘This makes youngsters know they're not weird and that things like homosexuality shouldn't be frowned upon,' and in the performance they showed no fear when they tackled homosexual relationships, a teenagers struggle with suicide and an on-stage sex scene without fear or hesitation.

I think that the open representation of sexuality and issues of all kinds on a university campus is incredibly courageous and necessary. So many young people come to university plagued with troubles and scared to express themselves. They're surrounded by new people that may judge who they are or what they think and there's so much controversy in the media and in society that people are afraid to be who they truly want to be. 

The Roehampton Players tackled this problem head on with an emotional but ballsy performance, sticking up a middle finger (literally for one of the musical numbers) to anyone who dared to contradict their choice. Though this a cautionary tale for parents who don't talk to their children about sexuality and teenagers who act without thinking, it is also so much more for the audience and the people involved.

As Matthew Hudson, the President of the LGBT society, told me for my Journalism assignment: 'Love is love, a kiss is a kiss, no matter who it is between,' the Roehampton Players certainly proved that this weekend in their performance and sent out a lasting message: 

Be who you want to be, do what you want to do, and leave behind those who think being different is bad. 

The Interesting Side of Being a Teenager

I really am a bad blogger. I get so distracted by everything that's going on around me that some things slip my mind. I'm ashamed to say that this blog is one of those things. Please forgive me, Bloggersphere, I still love you!

Lately I've had a bit of trouble with writers block. I've had a dozen preliminary ideas that have found a home in the folder 'Ideas' on my memory stick but none of them have stood out in the shining way that a writer requires to risk pursuing a 100,000 word adventure.

The market is currently flooded with dystopian and fantasy novels as I have begrudgingly had to accept. This particular sector of the market is unfortunately my forte. It is the type of story I am most commonly drawn to - the world building, the variety of characters, the adventures that can be had.

I think that a lot of young people are similarly interested for the same reason as a writer. The teenage years of someone's life is majorly filled with school, appearance, popularity and pressure. So a book, for most, is the perfect escape.

Take Game of Thrones or The Hunger Games or Divergent for example. No youngster is the ruler of Dragons or fighting for their District in a rebellion or battling against fellow Initiates. However the majority of teenagers are struggling with identity, falling in love or trying to prove their worth. Which if you look hard enough in a Young Adult book, so are the characters there.

That's why teen fiction is so popular nowadays. Teenagers have grown increasingly interested in reading, yes, but they have also found some friends, some family, in the characters. They have found people who can silently understand and help.

Moving away from dystopia and fantasy has been difficult for me. It's a passionate interest that is hard to detach myself from. But I've found myself wanting to give a voice to those teenagers who are struggling. Not through subtle messages or a battle with the self through a battle with the werewolf that's threatening to take over. I wanted to tackle the problems head on. Mental illness, PTSD, the war, love and pain.

That's why I'm excited and proud of my book that is currently sitting in an agents office being read and considered. Whether it gets published or not I have tried to speak for those who can't. For the minority and majority. That's why I'm confident in the idea that I'm currently working on.

Sometimes it's not about shouting the loudest, sometimes it's just speaking enough to be heard.