The EDS Chronicles: skin deep

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Blooms…

Growing up in a body which behaved differently than those surrounding me, both in my personal life and in the media, was less than a walk in the park let me tell you. The irony.

My name is Lori (Loren), and I am a 19 y/o woman living with a disability known as Ehlers Danlos / Hypermobile Spectrum disorder along with a host of co-existing illnesses; all of which have been discussed in conversation with you and your fellow readers. However, something I have not openly discussed is the relationship I have with certain elements of my condition, and how as a young woman in an ableist society I feel self-conscious and insecure about them. Until now.

 

My condition is caused by a defect in a gene producing collagen – resulting in too much. A surplus of collagen isn’t a good thing, as you may think. Collagen is used by every cell in the body, which causes widespread symptoms ranging in severity. The most common symptoms you will hear about is that people with EDS bruise easily, dislocate, have chronic pain, are fatigued, and have stretchy skin. Yet trust me when I say that this isn’t all. I don’t want this to sound to like I’m expanding on the symptomatic nature of EDS for sympathy or drive home a point of some sort; I wish to give a shed of insight to provide context for what I am going to share.

You may be asking yourselves ‘what are these mysterious symptoms?!’ and ‘why aren’t they talked about?’ which are both questions I have pondered many a time before writing this blog post. I suspect it’s a mixture feeling embarrassed, of not wanting to talk about intimate aspects of their condition and to maintain distance from their insecurities. I am one of the people who feel great apprehension openly discussing these things, but I’ve had just about enough of feeling self-conscious about something I have absolutely no logical reason to feel said way about, an illness that I certainly didn’t choose to have! Now is this difficult to write? F*ck right it is! I’m just bored with thinking the same BS when I look at my afflictions, and damn I’m sure you feel the same.

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When I was 12 I developed a deep purple stretch mark on my lower back, which I didn’t really take all that seriously as it was just one lone stretch mark? Right…?! Well for a short while this remained true until it seemed every week I was developing a new mark. Seeing that no one around me seemed to have any stretch marks, and they were associated with weight gain – I was confused; why were they there? Many people remarked on how they looked more like whip lashes than stretch marks, because of how unusually angry they looked. However, it was my reality and so it will always be my reality; yet little did I know I have a rare connective tissue disorder, which has continued to wreak havoc on my skin.

Skin fragility varies in people with EDS/HSD, and it’s something I struggle considerably with. Skin splitting/scarring is a constant – and it always seems like my skin is going through the mill at one given point. Now there are certain highly delicate areas of skin which are very prone to this splitting/scarring

  1. Inbetween my fingers and toes – oftentimes resulting in dressings or a shit tonne of Savlon
  2. My earlobes (no clue either)
  3. Inside my nose – the delicate tissue of the inner corners can tear, which I think is due to frequent nosebleeds

And the worst bit of all…my bloody groin. Now picture this, just having a shave of your bikini line as I’m sure all if not the vast majority of female Blooms out there have done at least once, and you get a little nick on your skin. No biggie? Well I’ve decided I’m no longer doing that shit, my body cannot take it. Literally, I’m currently using iodine and gauze to help the situation which has resulted from the risky combination of EDS and a Gillette. This has happened a few times, and each time I blame a bad technique. I’ve learned my lesson – nevertheless having scarring (which doesn’t heal properly no matter how much Bio-Oil you slather on them) which is pinkish in colour, on your bikini line doesn’t immediately strike as a connective tissue disorder. You cannot get over the counter medication to treat EDS if you know what I mean. 

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Relatively recent I visited the community specialist nurse, to be assessed for prescription access to a personal care item – something which is going to save my skin in the metaphorical sense. My nurse was called Karen [name changed] and she specialises in the management of incontinence. I remember the first time I pissed myself in public as a fully grown woman. In a Wetherspoon’s lift after having to take 2 floors up to use the disabled toilet; and this was before I had my own radar key…so that was a highly unpleasant experience for everyone involved. I ruined my shoes (don’t ask) and memory foam orthopaedic seat cushion. I can’t say that an occassional lift piss works wonders for your self esteem. Let’s cast our minds back, *it is before the days of my attends soft 6 pads -and the Bridget Jones granny panties I need to wear to keep the bugger where it should be. Apparently if you so much as move your crotch, the adhesive just gives up. However wearing granny panties when you yearn for Ann Summers lingerie isn’t something I particularly enjoy, and neither do I enjoy having to spend an hour cleaning myself up in the Topshop changing rooms after my bladder decides it’s time to face the music when I’m trying on some Jamie skinny jeans.

As a 19 y/o woman, who tries her best to cast herself into the dating pool, insecurities about such things sit there in the back of your mind – and for some, at the front of their minds. You cannot help but construct how you’re going to broach the reality of your condition, but hopefully, by writing this and putting my unspoken into the universe, the insecurities can disperse and make the secure increasingly visible.

Now, this post hasn’t the structure or flow that I try and put into all of my posts, but this blog post was conceived, planned, and quickly published in less than a few hours. But I feel like when I just let it all out, it comes across as more genuine and from the heart; and I need this to be raw and have a less structured, professional air. This is painful for me, and difficult to coherently compose. So I’m going to end it here. But one thing I wish for my readers to take away with them is that you are not alone in your insecurities, and this is sometimes hard to believe when they feel so isolating. However, by trying your best to seek representation and be representation for yourself, you’re growing through those insecurities…you’re Blooming from a bud.

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4 thoughts on “The EDS Chronicles: skin deep

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