Disability, depression and the invalidation of my lived experience.

by Veronica on July 9, 2014

in Ehlers Danlos Syndrome, Headfuck, My body is broken.

It’s been 18 months since I was diagnosed with postnatal depression, and twelve months since my brain was stable enough to come off my antidepressants and begin coping again. But the process of depression, like a lot of things, is not linear, and I find myself slipping back into old thought patterns quite easily these days.

Worry over starting a business is part of it, of course – we’ve invested time and money into this venture and as the launch day sneaks closer (September 12!), my stress levels rise.

But it’s more than that I think – a series of little things really. The anti-disability sentiment hanging around the joint lately doesn’t help. When a good portion of society is screaming that you’re worthless, it’s easy to dwell on all the things you can’t do, rather than the things you can.

And if I hear one person say “There’s no such thing as can’t” in a smug self-congratulating way, I may just hunt you down and personally stab you with a chopstick repeatedly until you can’t move.

It’s a lot of things and it’s nothing. Nothing and everything.

I’ve got an appointment with my doctor next week, ostensibly to fill out the paperwork Centrelink has demanded in giant red letters, asking me to prove my (degenerative, incurable) disability hasn’t magically improved, but I will be discussing the possibility of remedicating at the same time.

At any point when I stop writing, or leaving the house, it’s usually when I know I need help. So I’m asking for it.

The process of reassessment for disability support is also a factor here of course. Having to prove, over and over again that you’re telling the truth, that you have a problem, that it’s real, that it causes your life to be impacted in ways they can’t understand – it’s stressful.

I knew this was coming. I’m under 35 (clearly disability is harder to catch if you’re young) and I’m exactly the person the government is targeting with their current hate campaign, but I thought we’d have a little more time before I had to jump through metaphorical hoops. After all, the budget legislation hasn’t even passed yet.

But no matter. I can’t change it, I can’t fix it and I can’t magically fix the genetics which made me who I am and therefore start ‘contributing to society’, so I may as well just suck it up.

It’s still a bitter pill to swallow, to be beholden to a bureaucrat who decides whether you starve or not.

Someone, quite snarkily, told me I was not my genetic condition and I laughed and laughed and laughed. Because I am. Because this disabling condition is as much a part of me as motherhood, or the love of books and writing, or the fact I have black hair and hazel eyes. It’s part of me, sunk deep, and it impacts every single choice I make every single day. I can’t just take it off and have a break every now and then – it’s ME. It IS who I am, and I find myself resentful that someone would assume I could just delete part of my own story to… I don’t know? Stop talking about it maybe? Stop making them uncomfortable with the fact that disability can strike anyone?

I don’t know, but I still stew over it occasionally. “You are not your genetic condition” like somehow, my experiences as a disabled woman don’t matter. Like somehow, my disability is “other” to my identity.

Clearly this is a complex issue for me and I’m still working through it in my own head, but telling me I am not my genetic condition is akin to telling me to just get over it. To just ignore it and be … someone? someone else?

I don’t know.

It’s so much more complicated that a simple throwaway line suggesting my disability is not integral to who I am.

There have been a number of deaths in the Ehlers Danlos community lately. No one I knew, but friends of friends and it’s impossible to not be touched even slightly by the knowledge that EDS kills.

I am lucky in that my subtype is unlikely to cause aneurysm and death, or organ rupture. Crippling pain and dislocations, sure, but my doctors and I are pretty sure I won’t die of EDS related complications.

Not everyone is so lucky.

In the meantime, I will continue to potter around the house, doing the bits I can do and napping when I’m done. I’ll deal with yet another series of complaints when I can’t attend family gatherings because I’m too exhausted. I’ll hug my children, read a book, make some soap.

And hopefully, the antidepressants will help me get my head in order again soon.


Fiona July 9, 2014 at 11:07 am

The priorities of this government are fucked, I mean, why not spend that time and money that reassessments cost (and everytime you go to the doctor for one it’s sneakily a Medicare cost not a cost up against Centrelink) in actually doing stuff to help those able to work such as the long term unemployed over 55s who don’t have a disaility (other than their age being an actual handicap in this world) to get into at least part time work of some sort to you know, prevent health problems and depression in that age group.

ahem anyway

I’m glad that you can identify the signs that you’re not doing so great and need external help xxxxxxxxxxx

Dorothy July 9, 2014 at 12:35 pm

The anti-disability thing hanging around right now is why I hardly told anyone that I’ve applied for disability pension. Because you can’t see it, or touch it, doesn’t mean you’re not disabled.

It seems utterly ridiculous to have to prove over and over again that you have a genetic condition that can’t be cured. I really don’t get it. It’s GENETIC!

Anyway, I hope the a/ds help you get out of the slump you’re in. I’ve been on them for fifteen years and know that, for me, depression is not something that can be cured. It’s something that I manage, day to day. And having to prove that to some government flunky is deeply humiliating and offensive. Let them live a week in our bodies and see what they say then.

Denise Webber July 9, 2014 at 2:02 pm

So glad that you have realised you need help and have asked for it, feeling fragile because a dear friend of mine didn’t think she was worthy of asking for help and decided that the world would be a better place without her in it.

And nothing could be further from the truth, depression lies and it lies hard and fast and beats you down. Holding on and asking for help, admitting you need help. I would give anything to be able to tell her that.

Kate Gordon July 10, 2014 at 6:09 pm

I wish I knew you IRL. I’d give you a big hug and my Tiger would too x

Beth July 10, 2014 at 7:36 pm

You sound like you’re feeling kind of helpless in the face of some big stuff. Obviously, you’re not….. we all get that way from time to time, even those of us without disabilities and subsequent judgements! For me, helplessness and vulnerability = depression, action and ability to make choices = good. Don’t forget what you’re actually doing with this soap business – setting yourself up for a brand new kind of independence. Then no fucker will be able to make you feel helpless!

Erica Judd July 13, 2014 at 8:36 pm

I’ve been thinking about you a lot since the disability reviews were announced. The process is such a taxing exercise, I worry about the tasks people will have to perform and the price they will pay afterwards which Centrelink and such don’t see or seem to recognise at all. (I’ve been having flashbacks to my Disability Assessment, bloody useless generic piece of crap!)
It’s good that you know you need to ask for help, it is really hard to do.

As for “no such thing as can’t”, our standard reply to that has always been “Ever tried to light a match on a bar of soap?” An especially fitting comeback for you, you can even offer them a free-trial soap to use! 😉

Take care. xoxo

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