Facebook and Ehlers Danlos

by Veronica on February 22, 2010

in Ehlers Danlos Syndrome, Life

There is a copy paste status going around on Facebook that makes me want to gouge my eyes out.

Paraphrasing:

I love my body even though it’s changed through child birth, every mark, every scar, it’s a sign of my children and etc etc etc. Copy paste this if you’ve had children etc etc etc.

Lovely sentiment and I can totally understand why women are copy pasting it to their status. Affirmation that even though childbirth has changed your body, you are an amazing woman for it.

And you ARE. My GOD you are. You’re amazing, you created another human being. That right there is amazing and you should be proud. If I see the copy/paste thingy on your status, I promise, I won’t even be tempted to throw stones at you.

But reading that status makes me bitter.

Maybe because after 2 children, I’m not all that changed? I don’t think childbearing has taken it’s toll on my body all that much – except for how much bendier I got.

And yet, I am broken and battered still.

If my war wounds were a result of my children, I would bear them proudly, I would stand up and I would shout from the roof tops how proud I was of my body.

Yet, my elastic skin that tears at the drop of a hat, that wasn’t childbirth. The stretchmarks on my stomach, while exacerbated by pregnancy, weren’t caused by pregnancy.

The bruising on my legs, the livedo reticularis that means I can’t wear skirts, my battered broken bits –

Not a one of them I attribute to pregnancy and child birth.

Every. Single. One. of the things I dislike about my body is caused by Ehlers Danlos Syndrome and that makes me bitter.

I can forgive the visual changes – really, I don’t mind how my body looks, even though it’s different. It would have been different anyway, no matter what.

I dislike my body, often, even though I don’t have body image issues (in fact – 2 children later, I am quite proud of how I look).

But.

I hate how I can’t bounce out of bed without checking that all of my joints are in place.

I hate that I can’t walk across the room without tripping over, or walking into a wall, or having to think about every step and judge where everything is by sight, because my feet are stupid and don’t work very well.

I dislike that I have to think consciously about how I move.

I hate that pouring the milk for my cup of tea this morning dislocated my wrist.

I hate the fact that my ribs won’t stay attached to my spine like they should.

I don’t like the way my skin tears, just because it feels like it and then takes weeks to heal. I dislike the bruising that makes me look like a victim of domestic violence (although, am grateful, my face rarely bruises unless I actually walk into a door).

I hate that I am 21 and move like I am so much older – feel like I am so much older. I hate the pain and the exhaustion. My word the pain. My joints slide around like butter and while my smaller joints don’t leave me screaming, it doesn’t mean they don’t hurt. We won’t even talk about how my teeth hurt from the clenching.

I am bitter about how the EDS has changed my body and I dislike that I can’t love myself in it’s entirety, when really, I’d just like a trade in. It can look exactly the same, just someone replace my fucked up genetics and collagen PLEASE.

Bleh.

I’m just feeling crappy and wishing my only issues were visual ones caused by childbirth.

[Again I state that if you copy pasted that status to your Facebook, I am not having a go at you. You are amazing, you created a human being and you should be proud of every single mark it caused. I am just bitter that I am broken and hurting.]

frogpondsrock February 22, 2010 at 6:26 pm

I hate the fact that I can’t make you all better.

Fiona February 22, 2010 at 6:46 pm

*hug*

Ali February 22, 2010 at 6:53 pm

I can relate to so much of this post. While having kids has most definitely taken it’s toll on my body, I am very jealous of those people who can walk (or heaven forbid run) and move without pain, who don’t have to weigh up whether it is worth scratching that itch or typing that sentence when balanced with the pain it will cause.

It is absolutely unfair. You have every right to feel this way about it. It is something that no young woman should have to experience. The worst part is that you look so “normal” and there’s no way anyone unaffected could ever conceive of all the things going on in your body. I sometimes wish I could show someone, just for a day, or even an hour.
Hugs.

Veronica February 22, 2010 at 7:01 pm

Ali – that’s it exactly. I would happily deal with the issues caused by childbirth, but the EDS is just shitty.

Tanya February 22, 2010 at 8:31 pm

Oh darling.

*hugs*

You need to remember that you are a person dealing with EDS AND raising two children who are having the same (EDS) and similar issues as well. That would be fucking hard.

You might feel bitter but there are a hell of a lot of people who couldn’t cope with what you are coping with, me for one. I know it would be hard to focus on this aspect though.

*More Hugs*

Brenda February 22, 2010 at 9:08 pm

Oh love, you have every right to feel bitter and angry and stabby. I honestly don’t know how you do it. You amaze me, Veronica. You truly do!

Bendy Girl February 22, 2010 at 9:52 pm

Hugs and love bendy style! I understand how you feel, I used to feel that way myself. It’s so soon after diagnosis it’s only normal to feel that way. It will change for you in time though-now if I had a magic wand and 3 wishes I’d change all sorts of things, but I’d stay bendy
Xx

Marie February 22, 2010 at 11:25 pm

Hugs.

Pip February 22, 2010 at 11:41 pm

I’m so sorry. x

C February 23, 2010 at 12:12 am

Big hugs for you, my friend. XOXO

BTW, I’m with you on the Facebook status thing. A bunch of my friends posted it on their status updates, but I didn’t.

P.S. Your writing is absolutely wonderful and refreshing to read. I love the new things you’ve done with your blog too! Bravo! Oh, and I can’t believe how big the kids are getting! They’re growing soooo fast!!

Barbara February 23, 2010 at 1:34 am

I can’t imagine how you get through your days. I wish I could take it away from you.

Marylin February 23, 2010 at 5:23 am

Oh sweety, I so wish I could just take the pain away from you, and the littlies. It’s just NOT FAIR! Why you?? It sucks. I’m so sorry I can’t do anything at all to help. 🙁 xx

lceel February 23, 2010 at 6:01 am

I understand how you feel. I know how you feel. I’m not bendy, like you are – in fact, I could do with a bit more flexibility – but Annie is. She has EDS, just as you do – and we have lived with this pain, together, every day, for almost 33 years. So yes. I know something of what you’re going through. The most distressing thing about it – for me, for your Mum, for anyone who knows and cares about you – is there’s no way, yet, for anyone to make it any better.

I wish to God there were.

Mary February 23, 2010 at 6:43 am

So many things in life that I take for granted. I don’t know what it must be like to have to live with it…but I offer you my ears to hear, my eyes to read, my brain to digest what you write, and my sincere appreciation for your voice, your story and your life. Oh, and ****hugs***** too. Careful, non-owie hugs.

And for what it’s worth? I WISH I could atribute my huge, fat ass to having children, but it was there before they were and apparently always WILL be. 😛

Sass February 23, 2010 at 8:14 am

I’m sorry you have to go through this and can’t imagine doing it myself. I suppose that’s the way something heinous goes, though. You never imagine having to deal with it or that you even could deal with it, until you do. Is it funny or just inappropriate to mention the crazy sexual positions you can probably get into? It’s probably not funny. It’s probably inappropriate. But if you knew me, you’d know that inappropriate is kind of my middle name and that I try to deal with seriously shitty situations with humor most of the time. So if I suck for saying it, I’m sorry for real! And if not, then maybe I brought a smile to your face and that makes it worth it.

WackyLisa February 23, 2010 at 9:03 am

I can really relate to this.
I don’t have kids. If I’d gotten this way by doing triathlons or being a Mom or something where I felt I’d ‘earned’ it then maybe it would be easier to cope with. But, I was born with messed up DNA. I can’t even prove that to most people, even doctor-types.

Sass, you made me smile. I could get into some pretty fun positions when I was younger. Now my hips dislocate and I’m trying to be creative and find solutions around that.

Kristin February 23, 2010 at 10:53 am

In my opinion, bodies falling apart ranks up there at the top of life’s shit list. I don’t like it at all and I don’t blame you for not liking it. I’m glad you at least have the voice to write about it. xoxo

Cecilia February 23, 2010 at 12:10 pm

I am sorry you are having a rough time.

tiff February 23, 2010 at 1:32 pm

I can relate but only through Ivy.
Biggest hugs.

Kelley @ Magnetoboldtoo February 24, 2010 at 1:46 pm

gentle, not putting out shoulders and ribs, hugs babe.

river February 24, 2010 at 5:43 pm

The only things childbirth did to my body was varicose veins, (which I might have got anyway) and stretch marks. The fat I now carry has only appeared in the last 6 years from emotional overeating and lack of exercise. I do have more flexibility issues now, I’m getting stiffer as I get older, you should just see me some days trying to get my socks on, when I can hardly move my back. If only we could share. I’d take a little of your flexibility and you could have some of my steadiness.

Mrs. C February 24, 2010 at 11:46 pm

Welll… I’m a Christian and some of the stupid status updates bother me. Like the one about if the days of the week weren’t Christian we’d have Tearsday and Sadday and all that. Um… because I am snarky I had to inform the poster that the days of the week aren’t Christian to begin with!! Nice that you appreciate God and all, but can we admit that if God is Truth, and the Truth is that the days of the week are named after other gods, that we can think of something else to post??

Somehow I don’t have that many Christian friends LOL, which is odd. 🙂

Katie February 25, 2010 at 1:40 am

I found your blog through Brenda. I am embarassed to say that I did not know that this (EDS) existed. This post opened my eyes to it. Thank you for sharing it.
Also, These FB posts rank in my top 2 biggest pet peeves. I have been tempted to post
” I have no imagination whatsoever and can not be bothered to think of my own status update. If you are as big a loser as I am copy and paste this into your status” I have refrained. So far.

Treacy February 25, 2010 at 5:13 am

I’m sorry. Facebook has a really bad habbit of rubbing our faces in it a lot

Hyphen Mama February 26, 2010 at 2:39 pm

And yet, you still amaze me. You’ve got all that going on and you still do so much–you’re so proactive in your life.

I remember working with a couple of 24 year-olds several years back, who were all athletic and were training for a biathlon. At that time, I was 30 and had had an autoimmune disorder for 6 years and my friend was 26 and had had an autoimmune disorder for 2 years and we used to sit in the corner wanting to pinch those cute athletic girls’ heads off… they had NO IDEA how lucky they were that they could just “choose” to do something and do it. My friend and I, on the other hand, had to plan very precisely each move we made throughout the day.

I’m still going with the spoon theory… and feeling sorry for myself on the days there just arent’ enough spoons!

My friend, is now 33 and starting to go blind from MS. I try to thank my lucky stars that of all the things on my body that don’t work… I am not going blind and that is a blessing.

Jenn March 10, 2010 at 3:06 pm

I just found your blog through Fern’s, and would like to extend a hug. I too have EDS, at 23, although I was diagnosed as a child. I have the hypermobility type as well, but with a twist or two…

I love my kids, and sure – my stomach was stretched a lot by pregnancy, but the difference between me and someone without EDS is that my stomach will never go back. I can pull my stomach skin an easy 4 or so inches out, and no matter how many times people tell me, “It’ll go back,” they ignore the fact my youngest is over 2 years old, and it is just has stretchy and flappy as it was when she came out! Pancake droop anyone?… I have photos..

Anyhow, I too sublux my ribs, collar bone, wrists, shoulders, etc etc etc.. and know how hard it can be sometimes! Feel free to email me or what not, especially if you’re having a hard time!!

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