Laura on Life With Ehlers-Danlos Syndrome
Hello, you wonderful Spoonies! After a brief hiatus, we're back with more blogs! This time round it's another in our series of awareness raising blogs, to coincide with awareness weeks and months for some of the conditions our villagers suffer with. Today, to mark May as Ehlers-Danlos Syndrome awareness month, we have the lovely Laura Charlton with us to talk about her experiences with the condition.
Those of you who've been a part of the community for a while will probably know Laura and the awareness and advocacy work she does for the Spoonie community, and we're super grateful that she's taken the time to write this for us. You can find her on instagram at @laurahc__ or find her blog at the link below. Enjoy!
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Hi, I’m Laura. I blog over on confessionsofazebra.blog and aside from being a professional Spoonie, I’m pretty sure that I am half cat. They have it made really, wafting their tail and walking away from people they’re not interested in.
Anyway. I was diagnosed with Ehlers-Danlos Syndrome in May 2015, at the age of 22. Whilst the majority of my diagnoses have been over the past few years, I started to become symptomatic in terms of EDS when I was around the age of 10, but I was passed off as clumsy by my school and healthcare professionals. EDS doesn’t run in the family, so no one was looking out for it: I have wonky genes along with wonky joints and that’s taken quite a lot of adjustment to get used to. Throughout my secondary school years, I had a catalogue of bizarre injuries including my finger being dislocated and the main tendons being snapped when my friend held my hand in a French lesson, dislocating my knee by standing up (yes, really!), numerous broken bones, dislocating my shoulder doing a press up…I could continue! People found it funny, I had a reputation of being clumsy and often resembling Bambi on ice and the school matron was sick of the sight of my face. My mum raised how abnormal my injuries were to medical staff and was dismissed: they also thought that I was just a clumsy teenager.
In short, EDS is a connective tissue disorder: my joints dislocate really easily, my immune system is pretty rubbish and I’m in constant pain all the time. Over the past year, it’s been a hard lesson in getting my head around the fact that EDS doesn’t just affect my joints - it affects my whole body and my digestive system is really suffering and I have been diagnosed with gastroparesis as a result.
As a teenager, despite my various illnesses, I had a really active life. I was dancing numerous times a week and performing in dance shows. I was also on a county trampolining team and competing frequently. I loved playing netball and hockey and was on the school teams for both. I still love all of those things and it makes me sad that I’m unable to do most of them now.
Because EDS is a rare illnesses and no one in my family has it, getting a diagnosis took years and years and I had to fight to be listened to. Unfortunately this is pretty common for EDS sufferers. It was my incredible physiotherapist who put all the puzzle pieces together and told me about Ehlers-Danlos Syndrome. She went through the Beighton Scale with me and told me that I scored eight out of nine, with only my left thumb not showing signs of hypermobility. In general, my right side tends to be more symptomatic, with most of the dislocations being on that side.
My flare ups tend to follow the pattern of being down my right side. The joints most affected are my hip, knee, wrist and ribs. I had an unfortunate rib dislocation incident when I went to see Russell Howard live and laughed so hard that my top right rib popped out.
Over time, I have learnt that I need to be honest with myself and other people; it isn’t always evidently visible when I’m struggling due to the invisible nature of EDS. Some people aren’t going to understand, you can try and educate them, but if they aren’t willing to learn, that is a reflection on them, not you. You learn who your true friends are when you have chronic illnesses and they are the people who stick by you and don’t give up on you when you’re at your most unwell. Losing friends because of your health issues is a horrible experience, but the flip side is that you meet other people who similar conditions, who understand on a whole other level. I’m truly grateful for my Spoonie friends, I can’t imagine doing life without them!
Whilst being unwell has resulted in me having to stop working and defer from college, it has also meant that I have so much time, allowing me to focus on writing and raising awareness. Educating people on chronic and mental illnesses is something that I’m really passionate about, so in some ways, I’m grateful that I’m able to write about them and even more grateful that people are interested in what I have to say. And I can watch day time TV without any guilt about needing to do something more productive!
My biggest hope for the future is that EDS won’t be classed as a rare disease. That isn’t me saying that I want more people to be diagnosed with it because it is hell, but I want more people who be aware about it. I don't want it to be such a mystery in the medical world. Things are slowly changing, there’s evidence that younger medical professionals are more EDS-aware and I hope that continues.