“You Don’t Look Ill” | My Ehlers Danlos Syndrome Story

Today I wanted to sit down and share a more personal post with you all. It’s one I’ve had sat in my drafts for a while now so I thought it was finally time to actually share it. I’ve lived with diagnosed Ehlers Danlos Syndrome for the past 8 years. It’s a rare condition that very few people, including doctors, have heard of. I thought that by sharing my story it will give you a more personal look into my life, a look behind the makeup and happy Instagram photos, as well as helping to raise more awareness of Ehlers Danlos. So let’s start this story back from the beginning…

Throwing it way back to 2007, I used to be a horse rider until I had an accident. I had a slipped upper femoral epiphysis and had to have surgery to pin my hip back together. After the operation, things started to get worse. I was always in pain, constantly feeling weak and my knees began collapsing when I walked. My orthopaedic surgeon just told me I was lazy and that I had nothing wrong with me. The pain and fatigue continued to get worse, and it got to the stage I had to use a wheelchair all the time as I just couldn’t walk. My body was just so tired, my mum would have to help me do everyday tasks like bathing, eating, getting dressed etc.

As my orthopaedic surgeon literally thought I was making it up (I bloody hate the man!), we asked to see another doctor. It was obvious something was wrong! I went on to see a different consultant and after a couple of years battling, I was diagnosed with Ehlers Danlos Syndrome. I’d never heard of it before, and it initially scared me. Once it was explained to me, I remember just bursting into tears, I could actually tell my surgeon and everyone that disbelieved me that there’s a bloody reason I couldn’t walk! I was then referred onto Great Ormond Street Hospital where I saw specialists, and then went in for 3 weeks of intense physio rehab back in 2010. It managed to get me out of my wheelchair and able to walk again, although it will never be the same as a normal person. I have to pace myself, and every step is painful, but I can walk which I’m bloody proud of!

Ehlers Danlos Syndrome:

So you’re probably wondering what Ehlers Danlos Syndrome (EDS) even is. EDS is a connective tissue disorder that’s caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen – thanks Wikipedia! It’s a genetic disorder which both my parents have symptoms of but were unaware they had it when they had me and my siblings, so they also have EDS. Every person is affected differently by EDS, and if you have it I don’t want you to think everything that I have will be the same for you. Some people can live normal lives with the condition, some people are only mildly effected and for others it can actually be life threatening.

There are several types of EDS, and I have type 3 – the Hypermobility type. My joints are hypermobile meaning they move around too much, so I often suffer dislocations and subluxations. Every single part of my body is affected by Ehlers Danlos, even things like my skin, vision, my teeth, jaw, bladder, stomach, head… literally from head to toe. As well as the EDS, I also have other conditions that are linked with it like Chronic Fatigue Syndrome, Chronic Pain Syndrome, Orthostatic Hypotension, Autonomic Dysfunction, migraines, Temporomandibular Joint Disorder (TMJ/TMD), Costochondritis, IBS (not very cute!) and a few others I’ll skip so I don’t make this post any longer that it will be. Due to the various different problems and symptoms, I have to see a variety of different specialists in various different hospitals. Most of them are in London, which I don’t mind as it’s one of my favourite places, and it’s my excuse to do some serious makeup shopping afterwards!

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME):

Chronic Fatigue for me is one of the worst parts of EDS. You can suffer from CFS/ME alone without having EDS, but mines connected. This causes my body to constantly feel tired and exhausted, even after however much sleep or rest I have. I’d describe it as how I’d imagine you’d feel after running 3 marathons with flu after not sleeping for a week – it’s not great! I have what I call good days and bad days. On a good day I’ll normally be able to get up and go and get stuff done, I like to cherish the fact it’s a good day and try and be as productive as possible – although by the evening I’m normally crashed out on the sofa feeling pretty crap! On a bad day I can’t even get out of bed, or occasionally I’ll be able to gather up enough energy to make it to the sofa. This is were a lot of people get confused and end up disbelieving me. Somedays I can look fine with a full face of makeup and my hair done, but people don’t see me on the days I’m in my pyjamas with no makeup unable to physically leave the house. It would be so easy to go back to using a wheelchair, but I worked so hard to get myself out of one so I’m so determined not to go back.

Autonomic Dysfunction:
Autonomic Dysfunction is an umbrella term for various conditions that affect the autonomic nervous system. I’m still undergoing investigation as to what the exact condition is thats affecting me. I pass out without any warning signs on an almost daily basis. Without having any warning signs means I often get hurt when I fall. I do also also have seizures but I’m lucky enough to usually have some warning signs before that happens. It’s dangerous, annoying and embarrassing especially when it happens when I’m out in public! I’ve had various different injuries from falling like cuts, bruises, split lips, a broken mirror stuck in my forehead and a dislocated hip. I’ve really had to adjust my life as the condition had got worse over the past couple of years which has been hard. I can’t do a lot of things that many people take for granted, like cooking, using the kettle, going out on my own, having a bath without someone checking I don’t actually drown and driving is a big no. This also means I require 24/7 care which is not something every 19 year old wants to admit but I’m lucky enough to have a super supportive family.

Whilst I don’t want this post to come across as if I’m asking for sympathy because I’m not, I just wanted to show that life isn’t always perfect. I used to find it really hard to cope with everything when I was a lot younger, I just found it too much and I always wondered why me? Why isn’t my life like every other kid my age. Over the years as I’ve got older I’ve found ways of dealing with it all and it’s just part of my life now. Although I’m in a place that isn’t exactly ideal, I’m alive, I’m surrounded by incredible people and I’m living my life to the best I can. I like to focus on the positives, and I find blogging a great way of coping as I can just escape into the world of makeup!

So I feel like I’ve covered what I wanted to in this post. I know it’s not the usual happy type of beauty review or haul I usually post about, but EDS is a huge part of my everyday life and I wanted to share that with you. I hope that by sharing this and talking about EDS in future posts, I can help raise awareness of Ehlers Danlos as well as offering help and advice for others going through the same or a similar illness.



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