Being okay with not being okay

People who know me really well are fully aware I struggle with feelings of social isolation, even when surrounded by people who care. I’m currently trying really hard not to give into feelings I don’t belong anywhere and each day is a monumental exercise of survival. I’m trying not to give up because I still believe I have something to offer, now matter how minuscule.

With a Royal Commission into abuse and violence of disabled people (I’m exercising my right to use identity first language here) coming up – I have lots of stories to share. Mainly about trying to get help in the so-called health system and being told similar to the 17 year old in this story.

https://www.smh.com.au/healthcare/autistic-people-dying-at-twice-rate-of-general-population-new-study-20190225-p5105t.html

Some of the stories from my 20’s include violence, restraint and abuse from healthcare professionals and family members. All as I grappled to come to terms with what I now know to be AS meltdowns and an escalation of issues after a significant and life threatening injury.

Because of regular experiences like that I’ve got to the point where I don’t believe that I deserve a family or partner and for the last 7 years I’ve avoided new close relationships – because I can’t handle anymore violence. When it comes to close personal relationships I can’t tell when someone is trying to take advantage of me and people have done exactly that.

I’m also going to talk publicly about what happens to us when we go to emergency rooms, when we are told that we need to be sedated and go home and sleep (as a GP recently told me) because of other people’s violence against us. How we are dismissed and abused further when we start to crack because we’ve been trying to express things in our own way after months or years of trying to get help. When we are told we are mental or crazy for not wanting to be assaulted or verbally abused.

Fuck “Are you okay?” campaigns. Cause when we are okay with not being okay we are dismissed, ignored or told we are burdens.

Not sure why we need to spend millions on campaigns to justify asking for help when you ask for help to be told to suck it and see. Makes not much sense.

Most of my wage is now spent on just trying to keep well in the hope things will get better. I’m resigned to the fact I have a short shelf life and I’m determined to do what I can so that others don’t go through what I have. It’s not about me. I don’t care enough about myself for it to be about me.

In the 80’s and 90’s I could access services without it costing $180+ an hour (yes, after the Medicare rebate and no, private insurance is not helpful), now I’m pushed from pillar to post trying to get a therapy that has worked for over the last 25 years.

I can’t turn off what I experience. I can manage it, but there are times when I need more help and I’m asking for help only to not be able to get the right help because it’s $250 an hour. I get 10 visits a year at $180 and I need 30. Plus I need OT I can’t afford.

Then people try and offer essential fucking oils like people say “the only disability is a bad attitude”. To cite Stella Young no amount of smiling at the system is going to change it.

I want to work. I don’t want months off and homelessness and long periods of financial difficulty. I’ve done that three times now. Next time I won’t come back from it, I know this.

I get that for some, I fit a “burden of disease argument” and for many “tax payers” I don’t deserve help, that’s the message loud and clear. But for the moment, I’m still here and still trying.