For my birthday last year, I did that thing when Facebook helps you raise money for a chosen charity. I chose Ehlers-Danlos Support UK and was honestly overwhelmed by the support that decision received from friends and family. I raised £350 for Ehlers-Danlos Syndrome, just on a little Facebook whim, and it meant so, so much that people who know me recognised how important this charity is. As well as donations, I received so many messages from people asking for more information on Ehlers-Danlos, as well as people giving me their own experiences with friends or family who live with the condition. It was touching really, receiving messages of raw honesty expressing the pain they feel watching the people they love live in agony. My little sister was diagnosed with EDS in Spring 2017. She’d always been that one in the family who spent more time in A&E than anywhere else. She was called clumsy for the first 17 years of her life as she’d break bones left, right, and centre. I remember one summer we were walking in Land’s End and she tripped up a step. The crack of her arm breaking made tourists all around us stop and stare. It was kind of normal for us for Issey to have some limb in a cast, and nothing was really thought of it; she was just a clutz. Ditsy. Clumsy. As it turns out, this is a symptom of EDS. I was at university when Issey started having more serious health problems. I think I was kind of kept in the dark so that I didn’t worry too much about her while being far away. I first realised quite how life changing EDS was when my mum let me know that paramedics had come to our house because something had happened to Issey’s heart.
The most gut-wrenching thing I’ve ever experienced is Issey having a seizure. You just can’t get used to something like that. It hurts my heart knowing that she tries so hard to cover them up for as long as possible so that she isn’t an ‘annoyance’ to anyone. Nothing makes you feel quite as helpless as your younger sibling telling you their body feels like it’s burning up in a fire from the inside out, and there’s nothing you can do to help except hold their hand. For the majority of the time Issey is just like any other 19 year old. She goes to uni, goes out with her friends, goes on holiday, and from the outside looks like she leads a perfectly normal life. Because of this, it is difficult to comprehend that she is pretty much always in pain. I asked Iss to explain how she feels while I’m writing this and she listed off the things that are in pain right now when she’s having a good day; ‘legs, stomach, fingers, toes, arms, eyes, and basically all my bones’. The ‘fatigue’ she feels isn’t a normal kind of tiredness, she described it as feeling like she’s been filled up with cement. Nothing works – her whole body is in pain and weighs a tonne. I genuinely can’t comprehend how she goes about her life feeling like this every day.
I really wanted Issey to speak about her chronic illness. It’s so important for newly diagnosed people to have sources of information and also proof that they’re not the only one going through this. Invisible illnesses have been overlooked for far too long. I have heard one too many stories about people with an invisible disability getting shouted at and abused for parking in disabled parking spots. It is such an ignorant mindset that needs to be squashed out of society. I want to hand this blog post over to my sister and allow her to explain her experience with EDS in her own words. I really hope that this post helps even one person, whether that be someone with EDS, or a family/friend.
Receiving a diagnosis through the NHS can be a gruelling process. It often takes years, especially for a rare condition such as EDS. Conditions like Ehlers Danlos can go undiagnosed for years as their symptoms are an accumulation of many things. EDS is an umbrella term for many different types of connective tissue disorders. Furthermore, there are thirteen (!!) different types of EDS which are all made up of different symptoms. This makes it hard to pinpoint exactly what’s going on, and is part of the reason why EDS can go undiagnosed for so long. I only found out myself that I have EDS after I went through 2 years of physiotherapy for a broken collar bone. When everyone realised that it just wasn’t getting better I was sent to a consultant. After all this time, it was the doctor accidentally dislocating my shoulder on the hospital bed that finally concluded my diagnosis. Following that it took around 2 months for me to be seen by a genetic specialist, who diagnosed me within 2 hours. I am thankful to each person who helped me towards my diagnosis. It breaks my heart that since my diagnosis I have had multiple appointments with medical professionals where I have felt like I was not being taken seriously. Just this past Christmas I broke my arm. The hand surgeon who saw me had to look up EDS on Google and then proceeded to tell me she thought I’d self-diagnosed. I found this so insulting after the years it took me to finally get a diagnosis in the first place. She only believed me once I’d shown her a diagnosis letter from one of the highest esteemed Clinical Geneticists in the country.
Opening up to friends and family was difficult for me. I was so terrified of being judged by people just in case they did not understand. This fear meant that for 6 months after my diagnosis, I pretended it wasn’t happening. My immediate family is absolutely incredible. For as long as I can remember our dad has suffered from a chronic illness, which meant that we were all well equipped and experienced in coping, and in helping someone come to terms with something like this. They have always supported me no matter what, but the gratitude I feel for them now is on a completely different level. I would not have made it through the past few years without their never-ending love, help, and guidance. I also have some brilliant people in my life who are there by choice. It does take a while to weed out the ones who don’t understand or don’t care to understand, but I now have a small handful of people who I know I can go to no matter what. They are the ones that have never made me feel ashamed for having flare ups and are there to help on the bad days, and make the most of the good.
Being a young adult with an invisible disability in a work place I feel as though I can’t be honest and open about my illness, and the ways in which it affects my day to day life. I’ve always tried to hide it for fear of being treated differently or given less hours/responsibility. To be honest, I don’t think it is unreasonable. At one job, I was offered a promotion in a clothing retail store and was advised not to take it due to my health. In addition, I’ve been given random holidays because employers think I ‘look poorly’ (rude but whatever) when I actually feel ok, which has meant I couldn’t take holiday when I needed or wanted it. On a whole, I find employers lessen my hours in order to cover their own backs, which is fair, but frustrating on my part.
At the time of my diagnosis (April 2017), I was also studying for my A levels. Because my immediate response was to bury it and pretend it wasn’t happening, I failed to make my college aware. This was massively detrimental to my A level results. I would come home from college and go straight to sleep because I was so exhausted. I would tell my parents I was studying to stop them from worrying, and I would pretend I was balancing everything when in college. In reality I was struggling massively, and I never reached out. I wish I had dealt with things differently and had more faith in the people around me to understand. Despite this, now I am at University, doing a degree that could not suit me more perfectly, and I am proud of myself for how hard I worked to get here. My advice would be to tackle the diagnosis straight away, before it gets too late. However, from experience I know that this is much easier said than done.
I was originally prescribed anti-depressants, which would relax my muscles to help with the chronic pain. However, when my muscles were relaxed my joints dislocated more easily and frequently. So, after some digging around and different combinations of medication, my mum did some research on CBD oil. I have found this to make such a remarkable difference. It eases sharp pains, it reduces my stress/anxiety (which makes my EDS symptoms much worse), and I can take it in the morning as well as at night. This means this it works to ease my symptoms throughout the day, unlike my previous medication. Another way my lifestyle has had to change is diet-wise. My diet has to be pretty strict, or at least I try my hardest (sorry mum!!). I aim to avoid all sugars, even some natural. This is because too much sugar can make my heart go into mitral valve prolapse, which wouldn’t be ideal. I also limit any ‘unhealthy carbohydrates’ such as potatoes, white pasta, and bread, as they are full of sugars and make can make my body go into seizure. I try to avoid highly acidic foods, such as raw tomatoes, some fish, and processed meats. I need to avoid these because too much acidic food can tear my oesophagus. In addition, I try to cut out dairy products. I do try my best to stick to this, but it is difficult especially when eating out or at a friend’s house. Having to be this careful with my diet can be embarrassing in social situations, as I hate coming across as fussy when people don’t know it’s so important for my health. I think listening to my body and changing my diet accordingly has made a big difference to how I feel on a day to day basis.
Despite everything, I definitely count myself as lucky. I cannot express in words how amazing my family are, I am on a road to doing my dream career, and all in all, my health could be worse. I go on holidays, I go on nights out, I exercise (which actually helps my joints a lot), and I just have a lot of fun with my friends and family, regardless of living with a debilitating condition. I have tried my best to make sure my life is the same as any 19 year olds, and I think I’ve done a pretty good job. Worldwide, I think there is a big stigma around invisible disabilities. Those who suffer with them feel so much shame and embarrassment. We tend to suffer in silence or try and ‘act healthy’ to avoid questions or accusations. Many people just don’t understand. I would like to see a change made, and I think awareness is so important. I would like people to hear my story. And I hope that it sparks something, whether that be an early diagnosis, or a friendly word to a suffering friend. Knowing this would make it all worth it.
I’m so proud of my sister for sharing such a difficult part of her life. It’s taken a lot for her to become as open as she is now. Even though Issey is learning how to deal with her condition, this will never go away, and I think we’re all aware that she has a battle ahead of her. It’s a good job she’s a tough little thing. I really hope that the stigma that surrounds conditions like EDS begins to fade. People like Issey live their life in enough constant pain, without that feeling of dread and fear resting on their shoulders too. I really hope I live to see the world become a kinder place. Just because somebody looks okay doesn’t mean they aren’t suffering.
Thanks for reading,
R and I x
Some Useful Links:
– Ehlers-Danlos Support UK
– The Ehlers-Danlos Society
– NORD – Ehlers Danlos Syndrome
– A Reluctant Contortionist Blog
– Spencer and Me (Facebook Page)
– Two Being Healthy (Instagram Page)