Universal Credit Saga – Part Five

Welcome to your latest round-up on all things universal credit. Grab yourself a cup of tea or something stronger and get ready to find out more on the mind-fuck that is applying for universal credit.

Last week, I had my work capability assessment. I had a bit of an anxiety meltdown the morning of the assessment, basically crying because if the assessment doesn’t go my way, I am royally screwed. I think a lot of my fear stemmed back to validation and the fact that essentially, my future financial security, sanity and hopes were pinned on the decision of a stranger, who had never met me and that decision would overrule any made my medical professions, who are involved in my on-going care. As a result of my meltdown, my mum offered to come with me to the assessment, but would stay in the waiting room. This eased my fears slightly and off we trekked to the assessment centre, in the pouring rain, with me feeling like I was going to vomit. Plastic bags were packed just in case, although vomiting everywhere would only have strengthened my case.

The waiting room was typically British, only with more mobility aids and a smell of damp because we all resembled drowned rats. Everyone was moaning because the assessors were running late: two people lost the will to live and rearranged their appointments and the children belonging to the family who (I can only assume) thought that a trip to a health assessment centre was akin to a day out at the zoo, tried to pretend that their lives hadn’t ended during the hours waiting for their dad to finish in his assessment.

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Anyway. I was eventually seen and was in and out within half an hour. I was asked how my disability impacts on my day to day life, was told that I looked tired (no really?!) and was then asked if I could perform various movements: reaching up, making fists and then touching the floor. Hypermobile me excelled at this – my shoulders popped in and out as I reached up and I freaked the assessor out with how easily I could touch the floor, with my palms flat.

And that was it. I went home, got into bed and slept a solid 14 hours before rolling out of bed and going to a GP appointment.

Fast forward to today and I had the unenviably fun task of going to the job centre and handing in my latest fit note. I thought that it was going to be a simple case of handing it in and then leaving, but oh no, today I had the added fun of not only meeting a new work coach (I think my last one binned me off, can’t think why…) and then going through all my work commitments. Now, at this point, I would like to remind you of the phone call I received a few weeks ago, whereby I was told that all my work commitments had been switched off because I’m not fit to be working or searching for jobs. It would seem that my joy over someone having some common sense was short-lived: my work commitments haven’t been switched off and actually, I am still meant to be spending at least two hours a day job searching and keeping my CV up to date.

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I am so bloody confused.

Things got even better when my new work coach asked me if it was “just sickness” that was stopping me from working. Oh how I laughed, because that is properly funny. I explained in very simple terms, that even a halfwit could understand, that gastroparesis means paralysis of the digestive system and symptoms include but are not restricted to sickness and nausea, extreme bloating, pain and heartburn. The consequences of gastroparesis include being malnourished, which I am. Due to malnourishment, I am so exhausted that I frequently cannot stand up without my legs giving way, I’m constantly freezing cold, my skin is an attractive creamy-grey, my eyes have bigger bags that I knew was possible and I have bald patches where my hair as fallen out. Not to mention how much this is impacting on my already fragile mental health.

Apparently, I should find out within four weeks what the outcome is from my work assessment. I’m really apprehensive about it and it shows how broken the system is when the opinion of someone who has had a twenty minute conversation with me and then asked me to show off some of my EDS party tricks outweighs the opinions of my GP who has known me ten plus years, my physio who is specialised in chronic conditions, my gastro consultant who is the top consultant at the hospital and my therapist who has known me for three years. How is that right? Or fair?

Today I was told that the job centre would have a supportive role, regardless of the outcome. Thus far, their input has not been supportive, it has made me more unwell, stressed, anxious, depressed and I have been so close to giving up.

I mean, should the result be that I need to be in work, I could appeal but I’m now getting to the point where I’m really losing my fight. I know that, deep down, I have to keep fighting this, for me and everyone else caught out by a completely unjust system, but right now, I feel so defeated. I don’t even feel angry regarding my appointment today, just sad and exhausted.

Forcing someone into work, against the advice of professionals, isn’t supportive. This system is not supportive. This system is failing.

Gastro-what?!

Over the past few months, I’ve talked quite a bit about my latest diagnosis of gastroparesis. A lot of the time, I forget that for most people, medical jargon and understanding over medical conditions isn’t common knowledge, so with that in mind, I thought that I would explain a little bit more about what gastroparesis is and how it affects me in day to day life.

Gastroparesis is a long-term (chronic) condition where the stomach can’t empty itself in the normal way. Food passes through the stomach more slowly than usual: essentially, the digestive system becomes paralysed and in my case, food doesn’t pass through the digestive system at all. It’s thought to be the result of a problem with the nerves and muscles controlling the emptying of the stomach.

Whilst my diagnosis of gastroparesis has come very recently, I have been symptomatic for a number of years but put the symptoms down to EDS or food allergies/intolerances. Symptoms of gastroparesis can vary but include feeling full very quickly when eating, nausea and vomiting, loss of appetite, weight loss or weight gain, bloating, pain and discomfort and heartburn. People can experience weight loss or weight gain, although weight loss is more common. These symptoms can be mild or severe, and tend to come and go.

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On top of the symptoms, there can be some pretty nasty complications as a result of gastroparesis. Dehydration can occur due to repeated vomiting, which can cause hospitalisation, stomach acid can leak out of your stomach and into your gullet, known as gastro-oesophageal reflux disease (GORD), malnutrition can occur as not enough nutrients are being absorbed and people can experience problems with their blood sugar levels.

There isn’t an obvious cause for gastroparesis, although it can be linked to diabetes, complications from gastric surgeries and links to conditions such as Ehlers-Danlos Syndrome.

There are various ways in which gastroparesis can be diagnosed. I was diagnosed following an urgent referral to gastroenterology and having a gastric emptying scan using scintigraphy. Put simply, during this test, you eat food containing a small amount of a radioactive substance which can be detected during scans. Gastroparesis is diagnosed if more than 10% of the food is still in your stomach four hours after eating it. Other diagnostic tests can include bariumX-ray and endoscopies.

Gastroparesis can’t usually be cured, but dietary changes and medical treatment can help you control the condition.. I have been advised to follow a FODMAP diet, combined with a diet which is designed for people with gastroparesis. Since February, I have predominantly been on a liquid diet, drinking supplement drinks and eating very bland and simple foods when I’ve felt able to. It’s boring but I don’t miss eating. I miss the idea of food and have, at times, had some weird cravings but when faced with a plate of food, I feel incredibly anxious which in turn, makes the nausea and sickness worse. Catch-22.

Day to day, my symptoms can vary. I can had days where I am sick numerous times and can’t move off the bathroom floor because I feel so ill and exhausted. Equally, I can go two to three days at a time without being sick. However, during those three days, anything that I try to eat, will remain in my stomach undigested, and I will then be very very sick. It’s unpredictable and can make planning anything really difficult. I don’t like leaving the house because I’m scared that I will be sick.

I’m also really really tired, likely to be down to the fact that I am malnourished and I’m not absorbing the necessary nutrients. My hair has been falling out and whilst this has slowed down a bit now, I have been left with bald patches, which I’m self conscious about.

And then there’s the bloating. I have lost a lot of weight since February but I look like I’ve piled weight on because of how bloated I am. Again, this makes me so self conscious. I hate seeing my reflection and do whatever I can to avoid mirrors or reflective surfaces. As much as possible, I live in jeans and baggy jumpers, although now that the weather is getting warmer, this is getting harder.

My treatment at the moment consists of dietary changes and medication. However, there’s no indication that either of these things are working; I’m not seeing my gastro consultant again for a few months and I’m worried that by the time I see him again, things will have deteriorated further. My biggest fear is that I end up in hospital, needing a feeding tube. Unfortunately, this is a likely out-come, and I feel like I’m just waiting for things to get worse in order to get a clearer treatment plan.

Like other invisible conditions, gastroparesis can be really isolating. You don’t realise how much society revolves around food. I’ve missed out of so many social events because they have been food-based activities. My friends get it, but at the moment, the idea of explaining to restaurant staff why I’m not eating is a huddle that I’m not quite ready to face. People also tend to feel awkward if they are eating a meal and I’m not. Nutrition is a chore and scary, knowing that there isn’t a cure makes this hard to deal with. It’s slowly becoming my new normal though and I’m sure I’ll get my fight back soon.

 

 

The Problem With “Me Before You”

Warning: this post talks about suicide.

I’m going to hold my hands up right now and apologise for the fact that this is going to be somewhat controversial. Me Before You is, in my opinion, a bit of a marmite book/film: you either love it or hate it. So, to all the fans of Louisa Clark and her bee tights, I’m sorry for my upcoming rant.

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Personally, I’m not a huge fan of the book or film. I read the book purely because there was a massive hype about it and I wanted to see what all the fuss was about. It’s not my usual genre, chick flicks that fail the Bechdel test are normally avoided, but enough said about my inner feminist feelings.

My issue with the book and film starts with the promotion in the run up to the film adaptation being released. The production team came up with the hashtag #LiveBoldly, whilst promoting the life of a previously healthy man, who became disabled (quadriplegic) following a road accident and was therefore considering assisted suicide in Switzerland. That in itself is a bit of an oxymoron: can you really #LiveBoldly when your aim is to die?

At this point, I want to make it really clear that I do not have an issue with assisted suicide or euthanasia.

But was the underlying theme #LiveBoldly or dying quickly? A disability is not a reason to not live a fulfilling life. Being disabled does not automatically mean the taking away of potential, hopes, dreams and aspirations. And leading a fulfilled life is something that is promoted so heavily in the book.

I have a bigger problem with the fact that Louisa was left a substantial amount of money in Will’s will. Will dictated that he wanted Louisa to swap her boring and stagnant life for one full of adventure and possibility, visiting all the places that she only dreamed of visiting.

Can a person only #LiveBoldly if they are able-bodied? So, whilst Louisa does get to go on her great adventure and experience a life full of excitement and opportunity, this is at the cost of another person’s life. The message that is being given here is that an able-bodied person’s life is valued more in society that someone who has a disability.

People with disabilities are not your reason to cry. People with disabilities are not to the pitied or killed off, in order to give a book or film an emotional ending. People with disabilities are not the reason for making a book a page turner.

The problem could be lessened, if not solved, by the presence of just one disabled character to provide some contrast and show that suicide isn’t the only option. Will is deemed to be a strong and determined man: if a strong and determined man can’t cope with a disability than how are mere-mortals meant to cope? In both the film and the book, Will is portrayed as isolated and as someone who is encased in negativity with very little hope. No wonder his only solution was suicide: this simply is not the reality of all people with disabilities and it’s giving a very one-sided view on being disabled. There are a disproportionate number of stories which relate to the “problem” of disability being “solved” by death. Books, TV and films seem to love the idea of people dying and gaining freedom,

The recent death of Stephen Hawking has showed how this view point has been carried into the real world. When he died, people were saying that he was now free from his wheelchair. The reality, however, is that Professor Hawking saw his wheelchair as something that gave him freedom, not something that restricted it. It allowed him movement, speech, the ability to teach, develop world famous theories, to be a father, husband, son and scholar.

Suicide is still a taboo subject. When able-bodied people talk about suicide, they are discouraged and offered preventative support. If an able-bodied person commits suicide, without the assistance of another person it is legal. When a disabled person has the consideration, the issue becomes more focused on autonomy and being of sane mind but very rarely is a person offered the same level of psychiatric support. Are disabled people less worthy?

On a more personal note, I have struggled with suicidal ideation off and on for a number of years. If I was to say that the reason behind those thoughts and feelings was because of X Y and Z from my past, I would be offered interventions, a crisis plan would be written and there would be a discussion about how I could be helped. However, and this is the important bit, if I was to say that I was feeling suicidal because of disability or chronic illness, suddenly, that isn’t as concerning. I have said that and I was genuinely told that it was “understandable”.

So yet again, we are faced with the question of are disabled people valued less? According to Me Before You, it suggests that and that is not a message that should be given through popular culture.

 

 

Guest Post: Living with Crohn’s Disease

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Starting a new monthly feature of guest posts, I’m handing this post over to one of my favourite humans, Megan. You can follow Megan on Instagram @megans_healthjourney.

I’m not exactly sure where to start this but I guess I should start by introducing myself. I am Megan, a girl in her twenties, who has more pyjamas and dressing gowns than clothes, as well as a slightly unhealthy addiction to handbags. Which I guess could (possibly) be considered an economical purchase as a handbag will always fit me regardless of whether I’m in a flare or on the dreaded steroids. Well at least that’s how I justify the occasional one when I’m going through really rough patches health wise. Something I also collect, without any choice in the matter I may add, is chronic illnesses, because I mean why have just the one when you can have several? Hey, life would be too simple! For this blog post, however I am only going to focus on one of those illnesses and that illness is Crohn’s Disease.

My official diagnose of Crohn’s disease was on September 18th 2014, a day that unfortunately I will never forget. But whilst I left that consultation room speechless and in a daze, it finally gave me answers I had been looking for to explain how I was feeling. I had been getting symptoms for more than a year or two before hand with fevers, severe vitamin deficiencies, frequent toilet use, overwhelming fatigue etc but things got much worse in December 2013 leading to various hospital admissions to bring in the new year in 2014. I saw various doctors during my early admissions, but they couldn’t figure out what was the cause of my symptoms and I was left being promised gastroenterology input and medical investigations, but nothing materialised. In fact the referral didn’t even appear to have been made.  At the same time as the roller-coaster with my health, I was in the final year of my psychology degree, which in itself was a very stressful period and I ended missing some of my final year exams as I was hooked up to drips and IV antibiotics. I had barely been making it to lectures even though I was only due in twice a week, but the more people told me to postpone my course, the more I wanted to defy them and prove that I could do it and that my body no matter how hard it may try- would not beat me.

It got to a point in May that year, however, when I was verging on a breakdown and I could barely move from my bed or the couch and had a fair bit of lost weight on top of feeling so weak. I truly didn’t think I could go on much longer. I phoned up the hospital and said to them that I physically couldn’t wait any longer, and if I didn’t see a doctor within the next few days, and doctor was someone who would actually listen and follow through on their actions for once, then I felt I truly might die. I had no fight left so this felt like my last option. Fortunately, the week after, 6 months from the initial admission, I met my gastroenterologist and I felt for the first time maybe I was finally on the road to some answers. After various invasive tests, including endoscopy, capsule endoscopy and colonoscopy, she told me I had Crohn’s disease- a type of Inflammatory Bowel Disease. Although I knew in myself there was something wrong I couldn’t and still can’t quite believe I finally had an answer.

So, what is Crohn’s disease? It is a long -term condition that causes inflammation anywhere in the digestive system from the mouth to the back passage. It is so much more than a ‘toilet issue’, although that is a big part of the condition: sufferers can have anaemia, joint problems, fevers, a lowered immune system, depression as well as lots of other symptoms. I am grateful to have my diagnosis in the sense that I know what is wrong however knowing hasn’t meant that my journey is over- rather it has just been the beginning. I have had countless flare ups, some requiring hospital admission, as well as sepsis which is likely to be a result of the immunosuppressants I am on to try and control my Crohn’s disease.

Ultimately, I have and still do often feel very alone and ‘labelled’ with my conditions and though it’s easier to say, ‘you’re fine’ then say how you’re truly feeling? How can you really explain it to someone when on the surface you do look fine. But becoming chronically ill has also allowed me to make lifelong friends and for that I am truly grateful as the obstacles would be even harder to try and face alone. Finding out you have any condition at all gives you a new dimension to your identity, it’s made me change my life completely. I’ve learnt who and what really matters and just how precious health is.  If I could end with one ‘spoonie tip’ it would be to always listen to your body and fight to be heard as no one knows your body better than you. So, if you instinctively feel something is not right and you are met with resistance by the professionals you initially meet, it doesn’t mean your problems don’t exist.

Don’t give up fighting because you’re worth it and there will be other professionals who are willing listen and help.

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If you would like more information about Crohn’s Disease or IBD you click here and there’s lots more information over on Crohn’s and Colitis UK. Hannah Witton  vlogs about life with IBD, having recently had major surgery, resulting in a stoma.

Life Lessons from a Spoonie

You learn a lot about yourself and the world when you get diagnosed with a chronic illness. As someone who was a relatively healthy child, I never once thought that my life could change so drastically. In the three years since my formal diagnosis, there have been a lot of ups and downs and I know that the roller coaster that is chronic illness is going to carry on for the rest of my life.

I am not obligated to do everything that a healthy person does. Put simply, I can’t. That is something that I’m still learning: I still push my body beyond what it is capable of, because I don’t want to be viewed as different. I can’t work a 40 hour week, go out in the evenings and then have a packed weekend. Hell, right now I can’t even get dressed or leave the house. Working is important to me, but my health is important too. I’m allowed to know my limits. And I’m allowed to change them day by day.

Having a diagnosis of a chronic illness does not automatically make me an inspiration. I really struggle when people tell me that I’m brave or inspiring, I don’t see things like that. I have two choices: give up and lie in a pit of misery for the rest of my life, or pick myself up and carry on as much as possible. Sure, it’s hard, but what choice do I have? Feeling sorry for myself is only going to make me feel worse.

The reality of chronic illness is scary. It’s scary because people don’t understand. But I will not ever hide my illnesses to make other people feel comfortable. I do, however, know what is appropriate to talk about and with whom. I’m not going to drop into casual conversation that my nose constantly feels like it’s burning because of how sick I’ve been and that I’m scared to blow it, in case it caused yet another nose bleed. Spoonie friends are more likely to understand that. I’m open and honest about things, but I know that having a verbal filter is important too.

I am allowed to have bad days. I’m allowed to have bad weeks. I’m allowed to have bad months. I’m allowed to cry. Life can be really tough, unpredictable, scary and testing. I’m allowed to morn my “old” life and feel jealous of people who are healthy and don’t need to plan their lives around medical appointments and consider whether they are going to overspend on energy. If I do overdo it, I will not be ashamed about staying in bed and only getting up to go to the bathroom or get a drink. When my body is crying out of sleep, there’s no point ignoring that.

And I’m allowed to celebrate the little things, such as getting dressed and not living in pyjamas (although pyjamas are good) or going to the supermarket or replying to a backlog of emails.

It is not my fault that people won’t always understand. Unless you’ve experienced something, it’s very hard to fully understand what a person might be going through. Empathy goes a long way, but please don’t be patronising. Being ill hasn’t altered my intelligence. Seeing people unwell is difficult, I fully get that. But being unwell is a lot more difficult and having people walk away from friendships or relationships makes being unwell a whole lot harder. I’m still part of the world, sometimes I’m unable to join in and it’s isolating. A simple text saying “how are you?” is enough to make someone’s day.

I did not choose to be ill. No one chooses it. It is not my fault, it isn’t anyone’s fault. I didn’t wake up one day and think “hey being sick with no cure sounds like fun, I’m going to try that and see what happens…” This is not a lifestyle choice. This is my reality and the reality of so many other people.

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I will not apologise for something that is out of my control.

February Favourites

February might be the shortest month of the year but for me, it seems to have lasted forever. Winter is by far my favourite season however, even I am getting a little bit fed up with the spine chilling temperatures, snow and falling arse over tits after slipping on ice if I dare to leave the house. So, to shine a little bit of positivity on The Coldest Week Ever, I thought I would do a round up of some of my February favourites.

Books

Not working and being unwell means that I have had more time than normal to read. One of my resolutions for 2018 is to read at least 52 books, I’m a little behind but I’m slowly starting to get through my to read list.

Cat Clarke is a recent discovery, thanks to Life of Pippa and her book recommendations. I have read Girlhood and Torn and absolutely loved them. I’ve just started the audiobook of The Lost and The Found and it’s a little slower in pace, making it harder to get in to, but I’m sure that I will enjoy it. Cat is a young adult (YA) author, but the themes of friendship, bereavement and grief, transition of adulthood, isolation and guilt are relatable and she has a beautiful writing style.

Another book that I have loved this month is The Unpredictability of Being Human by Linni Ingemundsen. I very rarely cry reading books, but oh my god, this book had be crying actual real life tears on more than one occasion. One of the main characters has Autism Spectrum Disorder and it was well portrayed throughout the book.

One of my most frequently read genres is thriller/crime. Kimberly McCreight is one of my go-to authors and I am currently half way through Where They Found Her: full review next month but it is a real roller coaster of a book!

My final book for this month is Eleanor Oliphant is Completely Fine. Put simply, I adored this book, Eleanor is a complex character with a dysfunctional relationship with her mother, facing difficult decisions and changes. I am so excited to see how this is adapted into a film.

Films/TV

At this point, I want to give a huge shout out to Wilson, my friend Nikki’s dad who very kindly pays for the Netflix subscription that I leech on to. Not all heroes wear capes.

I’m a bit rubbish at discovering new TV programmes, I tend to stick to what I know and rematch again and again and again. But, I hold my hands up and admit that yes, I am now bored of Line of Duty, Happy Valley and Silent Witness. Although series 17-20 of Silent Witness did keep me entertained for a good week (that’s 30 hours of Emilia Fox cutting up bodies and getting herself into all sorts of dramas).

This month, after a recommendation from YouTuber Hannah Witton, I discovered Crazy Ex-Girlfriend. It is so bad that it’s good, I love the random outbursts into songs, even if they don’t always make sense. Rebecca Bunch is literally the ex-girlfriend that nightmares are made of. Note to self: never move to the other side of a country to stalk your ex-boyfriend…

I’ve also spent an unhealthy amount of time watching The Vicar of Dibley. I know, I know, it’s not new, but the recent death of Emma Chambers has meant that my mum and I dug out my Vicar of Dibley DVDs and binge watched ALL the Dibley. Dawn French is a comedy genius, am I right or am I right?

I had hoped to see Wonder, The Greatest Showman, Ladybird and Three Billboards in the cinema but I haven’t been well enough, so I’ll be nabbing them on DVD when they come out.

Spoonie Favourites

It seems only right to include a few things that make my life as a spoonie/professional sick kid a little bit easier.

After spending the majority of February in my pyjamas, I feel that I have become a bit of an expert in loungewear. Some of the best pyjamas that I have purchased have been from Matalan. Not what I was expecting either! They are super soft, reasonably priced and they wash well, unlike Marks and Spencer pyjamas which seem to shrink after one wash and leave me wandering around in ankle swingers with blue ankles because they’re so chilly.

Anyone who is close to me will know that I’m a little bit obsessed with The Body Shop. Around a year ago, I made the decision to change my makeup and cosmetics to cruelty free ones, and whilst The Body Shop has some questionable ownership, their products are cruelty free. I have fallen in love with their Fuji Green Tea Shampoo: at the moment, I’m not well enough to be dealing with long hair washes and deep conditioning, but using this shampoo has left my hair feeling all softy soft.

Not wearing makeup is doing wonders for my skin, however the cold temperatures and wind have left my skin feeling a little drier than normal. The Vitamin E Moisture Cream, again from The Body Shop has rehydrated my skin and a little really goes a long way. I use it twice a day and the pot seems very ending, in a good way! For some extra TLC, I’ve been using the Tea Tree Night Mask and Tea Tree Pore Minimiser. If you aren’t a fan of tea tree, these probably aren’t for you because they are very…tea tree-y.

 

Odds and Sods

And finally, a few things which have made my February a little bit better but don’t fit neatly into any of the above.

I want to give a huge virtual round of applause to Spoonie Village. As a spoonie herself, Hayley’s artwork is fantastic and so relatable for Spoonies. I could spend a small fortune on her Etsy store and receiving packages from her makes my day.

Another virtual round of applause goes to Elle Darby, YouTuber extraordinaire. She is one of the few vloggers who genuinely cares about her followers, shown by her willingness to interact with everyone and the fact that she hosted a huge Angel Party for her followers, once she reached 10k on YouTube. I’m gutted that I wasn’t well enough to go, here’s holding on to the potential summer party. Elle’s videos have got me through some bleak hospital visits and I’ve gone from crying with utter depression to laughing at some of the stuff she comes out with.

My last favourite of this month is IV/IM cyclizine. Cyclizine is an anti-sickness medication and it has been a saviour this month. Unlike my lovely friend, Claire, who can’t be dealing with the head-fuck it gives, I love the stuff and would happily lead a trippy life, constantly off my little head on the magic drug!

 

 

 

 

 

We Need to Care More About Rare

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The 28th February is Rare Disease Day. It is expected that at least 1 in 17 people will be affected by a rare disease at some point in their lives and there are between 6000 and 8000 diseases which are categorised as rare. So, without realising it, the chances are that you will probably know someone who has or has had a rare disease.

Ehlers Danlos Syndrome is classed as a rare disease, although under the EDS umbrella, there are different EDS sub-types which are more well known than others. I talk about EDS a lot, it’s a huge part of my life and it impacts on my life every single day. But what actually is EDS? EDS is a genetic condition which affects the connective tissues in the body. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, a bit like the mortar between bricks, which hold a house together. Without the mortar, the bricks still stand, but are likely to have problems and won’t be structurally sound.

I have hypermobility Ehlers-Danlos Syndrome (hEDS). Unlike the other 12 types of EDS, the specific gene mutation responsible for hEDS hasn’t been found. I don’t know if EDS is something that I have inherited or if my genes just went a bit funky when I was still in foetus. What I do know is that I have super stretchy collagen and because of this, I can extend my joints further than deemed normal. As my physio has put it, my joints are “free spirited”. Diplomatic.

Because collagen is present throughout the body, people who have EDS tend to experience a broad range of symptoms, however most of them less visible than the joint differences. This means that for the most part, EDS is deemed as an invisible illness. So I’m rare and invisible: imagine if I was a superhero? The other symptoms of EDS commonly include long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. These problems and their severity vary considerably from person to person, so one person with EDS may suffer with numerous dislocations a day, whereas another person might suffer more with digestive problems. Some people with EDS need a wheelchair, other people don’t. Some people aren’t able to tolerate any oral nutrition, other people don’t have any issues in gaining adequate nutrition. Some people will have stretchy skin and bruise easily, other people won’t.

Very little is known about EDS, although that is slowly changing, with more and more research being done. That said it takes the average person over four years to receive a formal diagnosis of a condition that is known as rare. In the case of EDS, it can take over a decade to get a diagnosis, from the first onset of symptoms. I was around 13 when I first started displaying EDS symptoms, although as I have mentioned before, those symptoms were dismissed as me being clumsy. I was officially diagnosed in May 2015, at the age of 22. At that point, I had already had two major hip operations, elbow surgery and surgery on both of my eyes, numerous broken bones and dislocations, snapped tendons, unexplained fainting episodes and illnesses that resulted in hospitalisation due to being immunocompromised. That’s the thing about EDS, because it’s rare, no one was looking for it, hence going so long without a diagnosis.

EDS is not just being double jointed, please don’t mistake the two. EDS does not just impact the body’s muscles and joints. Connective tissues make up around 21% of the body – you do the maths, that’s a lot of body which can be affected, including organs. It is a multi system disorder. You also don’t have to look a certain way to have EDS: the beast does not discriminate. You don’t have to be tall (at 5ft, I’m definitely not tall) or have a specific skin colour. Those people who have been diagnosed with EDS can vary in height, weight and ethnic backgrounds. We are a diverse bunch.

My hope for the future is that EDS will not be classed as a rare disease. That is not me saying that I want more people to be diagnosed – I would’t wish this on my worst enemy. I want more people to know about it. I want more medical professionals to be EDS aware; walking into a hospital and not having to spend 10 minutes explaining about EDS would be amazing. I want there to be more media coverage, less stigma and more understanding. Ask questions, don’t make assumptions: we are more than happy to education you.

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