Thursday, June 13, 2013

It'a a Delicate Topic: Vulvodynia

You can buy your very own lingerie from Kiss Me Deadly here

Even though his tweet was slightly snarky ("DOUBLE amazing" -- hoo, boy), thanks to @joereddington for tweeting the link to this blog post written by an amazing woman with invisible illnesses. Here's a few excerpts:

Diversity is More Than a Bra Size: What It’s Like to Be a Woman with a Disability in the Lingerie Industry by  Catherine Clavering of Kiss Me Deadly.

Of all my disabilities, the one that means I can’t wear knickers is probably the most blackly hilarious, when you consider that I run a lingerie brand for a living.

....I’ve got M.E/C.F.S (otherwise known as Chronic Fatigue Syndrome) which means I’m perpetually knackered, in pain, brainfogged, hypersensitive, migraine-y, sleep disordered, and grumpy. Wait, no, I’ve always been grumpy! I’m pretty certain the rest of them are symptoms though, plus a bunch I left out. It gets boring.

I also have I.B.S., which is as grim as you can imagine for a digestive problem, and Lichen Schlerosus, a painful genetic, auto-immune skin disorder of the genitals. In addition, I have vulvodynia (chronic and acute genital pain. all the forms of it, plus a few rare ones), and a hemophilia-type blood disorder called  Von Willebrands if you’re a mature, sensible adult (or “Von Willywotsit” if you’re me).

.......If you mention disability in lingerie circles, or fashion circles, or most of the western world, for some reason most people start talking about wheelchair access. But not only are people who use wheelchairs a small proportion of people with disabilities (< 8% in the UK), visible disabilities of any sort are the minority.

You might be saying, “But fashion is a visual industry, of course we would represent disability visually.” However, there are two problems with this:

Great, except when was the last time you saw any disability represented? Cora and I keep a tally of models of colour at trade shows, but neither of us has ever even asked if there were any models with disabilities. The one time I used one (shown above), I ended up in a fight with some of my retailers about it. The model herself said that most photographers like to either cover it up completely, or make a “thing” out of it.

If our idea of disability revolves around visible problems, I’m screwed. And not in the fun way. Ever bitched about the woman on the stairs in front of you going too slow? Or the one in the supermarket aisle who has just ground to a halt inconveniently? Or the woman who looks fine but is taking up a disabled seat on the bus or a parking space?

You can read this excellent thought-provoking and sometimes-humorous post in it's entirety here.

Vulvodynia, (persistent pain of the vulva, the skin surrounding the vagina) and one of the author's invisible disabilities, can also be associated with Sjogren's syndrome. You can read more about this and other gynecological issues in Sjogren's syndrome herehere, here, and here.

Also by Ms. Clavering and addressing an entirely different topic, read this if you've ever wondered how on earth women who wear designer underwear actually .... um.... attend to certain biological needs. Favorite quote: "Pros – fairly easy to do, though I suspect its easier if you’re relatively slender, or maybe hovering. Yes, you know what I mean. Cons – for gods sake don’t lose your grip. Or your aim."

Ok. Where was this information when I was looking at Spanx??


ShEiLa said...

I see invisible problems a greater disability... we shouldn't be afraid to discuss painful problems we prefer to keep private.

Thanks for the post Miss Julia!


Christine said...

I have had vulvodynia...about 15 yrs. ago. I never knew it could be connected with Sjogren's. Thanks for the info.

Joe said...

So I've just found out that that tweet could have been read snarkily - apologies, it certainly wasn't intended that way... You are welcome to review the rest of my feed to see if that's the type I humour I normally use or even think of. :)