Category: disability

“Happy” World Mental Health Day

Woke up so anxious today and it rapidly build up. Seeing the Happy World Mental Health day platitudes on Facebook and Instagram, contrasting that with the reality facing my loved ones didn’t help at all. I mean this tweet for one:

The discussion on Twitter over the weekend with people with Ehlers-Danlos syndrome (EDS) being denied access to the NDIS because they haven’t access all of the supposed treatments out there that are neither listed nor readily available in either the public OR private systems 

It’s the same as trying to access the Disability Support Pension, you need to HAVE money in order to access the treatments and diagnosis that gets you onto the pension, plus you also need to prove you aren’t getting better any time soon.

 

Oh and we also realised that the Medicare rebated sessions for those that can afford the upfront cost for and get into see psychologists are going back down to ten sessions from the 20 they were at during Covid.

Where am I going with this?

There are SO many basics that need to come into place before people can even think about being mentally well. You have to be able to feed yourself, and not just a daily meal of out of date pasta,  you need fresh fruit and vegetables. You need stable accommodation. You need to be safe from violence. You need to be able to treat your PHYSICAL health needs. You need to be able to get into a GP, to be able to either find one that still bulk bills, or to be able to front up the $80+ for that appointment before the $39 rebate. And that’s never a one-off. And the specialists, waiting list and fees if you can even get into one. And meds, even on at healthcare card that’s $6.90 a pop, if it’s on the PBS, otherwise it’s also $80+ without any rebates.

If it feels like an impossible task some days, that’s because it may be.

We need the governments to act, to work together to provide public housing, to raise the rate of all welfare payments to above the poverty line, to allow access to the right payments like DSP, parenting payment, JobSeeker, without so-called mutual obligations that amount to harassment and bullying. That make people less likely to get a job or keep one.

I’m tired and scattered today. I went to a dentist appointment at the public clinic only to be told it had been both made and cancelled on Friday when they called me. SO I’ll work up to it again on the 20th. I think it’s for getting my front fillings redone. I never had dentist anxiety til when I was 20 and they pointed out the enamel damage from a combination of overbrushing and bulimia. Fun. So those of the caps I’m probably getting fixed.

But I’m excited! About the people I’mma gonna meet!

PROTEST: Break the poverty machine | International Day to Eradicate Poverty

Join us this Monday the 17th, in Adelaide or Online or in Newcastle to protest for a better future for welfare recipients. To Break The Poverty Machine!

Lookies ! made pictures for Newcastle! Seeya outside Newcastle Centrelink 11am Monday October 17th!!!

Borderline Personality Disorder (BPD) Awareness Week 2022 – See the person

Hey, it me!

Let me preface this post with I’m not an expert on anything other than myself and I’m still learning bout her too. This is not medical advice and I’m sure you can argue against any of my points, but this is how I currently see the fun world that is having Borderline Personality Disorder and it will likely change again over time, come back to this post for next year’s BPD awareness week and shudder at my naivety!

See the person is the theme for this year’s BPD Awareness Week here in Australia.

People living with borderline personality disorder (BPD) often find that their diagnosis is the first and only thing other people see. The 2022 BPD Awareness Week campaign encourages everyone to see the person alongside their BPD diagnosis, symptoms and survival actions. We’re all complete and unique individuals, each with our own strengths and challenges.

The growing body of mental health knowledge recognises the diversity of life experiences: the role genetics can play, experiences of gender identity, sexual orientation, neurodiversity or trauma can all contribute to our well-being. It’s a universal experience to be assigned various labels throughout our lifetime – and many people living with a BPD diagnosis experience stigma. We all share the fundamental need to be treated with respect and dignity, free from stigma and discrimination.

This year’s message reminds us to look at the person alongside the labels, ask what their experiences are and how they continue to make sense of the world. For carers, family, friends, supporters and clinicians it’s a reminder that underneath negative or harmful coping behaviours a person can often be struggling. Let’s celebrate the person they are alongside their diagnosis, acknowledging their strengths, resilience and courage in order to SEE THE PERSON !

This campaign is informative and educational, having been co-designed and co-produced by the strong voices of people with lived experience to promote recovery, positivity and hope.

So, what is Borderline Personality Disorder?

Borderline Personality Disorder (BPD) is a complex mental disorder that is often misunderstood. People with this disorder are frequently discriminated against and stigmatised.Symptoms for people with this disorder may include emotional distress, self-harm, difficulty relating to others and the world around them. This can be very distressing for the person and for people close to them.Currently between 2% and 5% of Australians are affected by BPD at some stage in their lives. The symptoms of the disorder usually first appear in mid to late teens or in early adulthood, with women three times more likely to be diagnosed with BPD than men.The causes of BPD are not fully understood. They are likely to involve biological, social and/or environmental factors. For some people these factors may relate to childhood experiences of trauma or neglect.Contrary to common belief, people with BPD can recover! With early diagnosis, appropriate treatment and support the prognosis for people with BPD is positive.Having BPD is not deliberate; it is a disorder people do not choose to have. People can recover!”

Well, you can get a diagnosis of BPD when you meet 5 of the 9 diagnostic criteria.

  • frantic efforts to avoid real or imaginary abandonment
  • consistently intense and unstable relationships with other people, alternating between idealising them and devaluing them
  • persistently distorted self-image or sense of self
  • at least 2 impulsive behaviours that are potentially self-damaging
  • ongoing self-harming behaviour, suicidal behaviour or threats
  • intense feelings lasting hours to days
  • long-term, chronic feelings of emptiness
  • difficulty controlling intense and inappropriate anger
  • feeling disconnected from reality, or having paranoid thoughts

It doesn’t matter which ones, and the ones you meet can change over time, and you can have only 4 and technically not “have BPD” but still be suffering. You can go back to meeting the criteria after “Remission”, because while therapy and medication have their place, BPD is not a simple “chemical imbalance” you can fix with the the right medication regime, and DBT and other therapies can have a huge impact on your life, but again it’s not a one-size-fits all thing, as you can imagine being such a variable diagnosis. Since you only need 5/9 to meet it, it’s possible me and my friend with BPD only share one of the criteria, and so present extremely differently.

Why people come to be diagnosed with BPD is also such a varied path. This might seem a little reductive, but I’m starting to notice to main streams in the people I’ve met with BPD, which overlap many times. There’s the group that have experienced clear, pin-pointable trauma and those who struggled to regulate their emotions and interactions with the world for as long as they can remember and then they get to teenagers or adulthood and can’t hide it any more and it gets messy. Of course they overlap, with the second group unfortunately finding themselves vulnerable to mistreatment and abuse that leads to trauma, but they seem to be the two main “paths to BPD”. Many of the second group look back into their childhoods and realise that they may have been living with Autism or ADHD but not had it recognised as they weren’t classically Autistic, which led to them developing the coping strategies that are BPD in order to attempt to function in this world. Others are the Queer Kids, not fitting in gender or sexuality wise and tried to fit in so badly that they came to grief. BOD seems to come from trying to fit into the world when you’re not the right fit, trying so hard, but just not getting it right.

The diagnostic label of Complex-Post Traumatic Stress Disorder (C-PTSD) is being used more widely in recent years, and often to do with that first group, the survivors of Childhood Sexual Assault or other traumas in their formative years. Organisations like The Australian BPD Foundation are even looking to make their names more inclusive of these extremely similar and even overlapping disorders than impact the lives of those living with them significantly.

If we didn’t have to have diagnostic labels to access supports, it really wouldn’t matter whether you considered yourself to be Autistic, Borderline, CPTSD, a survivor, ADHD, Queer or any other thing trying to fit into this world, but it does, from needing to meet the BOD criteria to access Dialectical Behavior Therapy programs, to knowing you have ADHD to get the right medications, to being “Autistic enough” to access the NDIS, or getting the right paperwork together to get DSP. The world needs us to have labels, and they really do help in gaining an understanding of yourself, and learning how you work and how to figure out how to function or even thrive in this world. Early diagnosis and understanding is such a preventative thing, and I’m glad that children get ADHD and Autism recoginsed younger and younger because it means we can help them and help them to help themselves at this early stage, while we’re able to coach and comfort them, because it “Gets messy” as it does for many in their teens.

I call myself Borderline and Autistic, I strongly saw myself in the BPD criteria the first time I read them a little over ten year ago. I worked in Autism organisations in my 20s and 30s and never ticked that the Fiona I grew up as could be considered Autistic, but getting to know more and more Autistic and ADHD and other neurodiverse adults I’m able to learn about the parts of Autism that I “have”, how the sensory world works for me, how I operate socially, how I communicate, how I need to time and space to regain my  social and sensory spoons after doing the things I love and the things I want to do. How caffeine affects or doesn’t affect me and whether that points to ADHD lol. I remember being called out at work by managers about how I operated in meetings or interview and I can really see now how that might have seemed odd, but also if only I understood that I could be “on the  spectrum” it would have made sense. I don’t have an Autism diagnosis, and I’m lucky enough to not have top seek one at this stage because it’s bloody expensive. So I just work on understanding and educating myself, and working with who I cam to be the Fiona I wanna be, BPD or no BPD.

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Happy Borderline Personality Disorder Awareness Week – This is me!

And Liptember is OVER!

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So, Liptember is over for another year, and I’m happy that I met my fundraising target, and that I wore lipstick every day, and I tried a few new things, but I’m also tired. Why tired? Well because people around me are. Because while it’s fun to do fundraisers, it’s hard seeing people around you not being supported with their mental health. People accessing all they can – the Medicare rebated psych sessions, medications, GP visits – but that not being enough to make any headway. My sister will feel I’m calling her out with this, and while I am, it’s also half my Twitter feed and a bunch of my Facebook family and friends. They do what they need to to tread water, they maintain, they get things done, they keep on being alive, they keep doing the appointments they have to, to work days, the welfare obligations. But they don’t really get ahead.

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I’m certainly not ahead either, myself, I just managed to get myself to a point where I could convince the government that they were better off giving me DSP that trying to get me into a job that I might just throw away at the first sign of trouble. I had the privilege of being able to front up the cash for private psych and OT, to be able to get into the therapy program that made a difference but wouldn’t “fix” me, to get the reports from the private OT that got me over the line for DSP. So that now I can jump in and out of the real world as I see see fit with a safety net of not losing my DSP backup because I tried and failed at something.

I’m not yet at the point of wanted to do paid external work, but I’m participating more outside myself – I’m more involved with my local Greens’ group and the events and meetings they have, I’m more active online, I’m experimenting with more social media avenues and with Twitch streaming. I’m dabbling around to try and find what I like, and hopefully being useful in the meantime. I’m doing my e-girl and activist things and I really like that. Those things excite me, being online, trying to make a difference, either together or separate, but also just figuring out me.

While also being able to be there for my partner and my sister and their kids. Helping my stepkid get into the right therapy, taking my nephew and niece to appointments, babysitting the little ones, being a sounding board for my sister, making my partner lunch and dinner and keeping  a clean and ordered house so we can relax together in the evenings. Playing with my dog, getting the kids used to a dog. Helping the children learn to be themselves and grow and explore their lives.

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I’m doing what I can and mostly what I want to do and while I’m tired, I like it. I like me.

You can still donate til the 15th for my Liptember, and I’ll wear the lippy of your choice one day 🙂 I still don’t have yellow and threw out a few over the month, but there’s still way too many to choose from.

Autism Acceptance, Awareness and Awesomness Day

I will preface this post to say I don’t have a formal Autism diagnosis, and I’m trying to be brave enough to raise it with my DBT therapist (maybe this is the week) but I do believe in this world of mis-diagnosis and gatekeeping of diagnoses by “specialists” with big books, self-diagnosis is valid. I’m still pondering if I’m #actuallyautistic, either instead of or alongside my Borderline Personality Disorder Diagnosis, and learning about the experiences of other women and girls growing up without or with an autism diagnosis hits me in so many feels – ie I could be that little girl being misunderstood, trying to fit in, trying perfection to please others. Anxious and confused but somehow masking and muddling through, despite the emotional pain.

Having a Speech Pathology qualification and experience has NOT helped me in my understanding of my possibly autistic self. Too much medical model, experience being a diagnosis gatekeeper or at least working amongst them, working within the DSM, and the deficit models that diagnose because of trauma induced behaviours. It also moulded me into not believing Autistic adults were as capable as many of them clearly are, again working with people because things are going wrong in their lives, often to the inconvenience of caregivers or authorities, and not because, actually let’s work towards their own goals.

The Yellow Ladybugs conference last year focussed on the mental health of autistic girls, with plenty of sage advice from autistic women who were once confused little girls like me, trying to understand and fit in with the world around there. That conference showed me that autistic women could be psychologists and teachers and speech pathologists, but it took a lot of self-awareness and self-advocacy in a professional sphere that very much has an us and them feel at times.

I worked at a specialist autism school at one stage in my life. I think if I had the understanding of myself that I do now, I would have been able to cope better (bloody hell schools are over stimulating nightmares at times, let alone the social demands!) and would have been a better speechie, better at my job is all aspects. Unfortunately at that time in my life I was not doing very well at all mentally, it’s around the time I got my BPD diagnosis and had my first hospitalisations around self-harm. So yeah, If I could have my time again? I don’t actually know how I’d handle it…

But I’m working through my journey. DBT is going well, I AM feeling more skillfull, I can handle more of the things the world throws at me, even though I’m really only just emerging into a living with covid world where I have to interact with people in person and somehow backup and do it all again. My spoon levels fluctuate wildly, and I have to attend to my downtime, so I can be present when I’m wanting to. We’re doing the interpersonal effective model, and god doesn’t it feel like a social skills training for autism, eye contact recommendations and all. I’m a bit skeptical of parts, but I give everything a go, and apply what works for me. I hope the others in my group can too.

So this Autism Acceptance month, I’m learning more about myself through all of your experiences, so please, share your stories, I’m thankful. I wish they were so painful at times, I’m here with big hugs and virtual stuffies and weighted blankets for time out when you need x

My DSP was approved (aka why JobSeeker is not a safety net)

You’ve probably heard me buzzing about on Twitter about how I received a positive outcome on having my DSP rejection reviewed. I’m getting DSP baby! I got the call at 5.15pm yesterday, smack on 49 days since the review letter said I’d be getting the decision in that timeframe. A phone call from an actual person too! I guess unlike a rejection I won’t yell at her. I squealed a little I think. A friend asked if I cried, but yeah not yet, just relieved to have it approved.

I’ll probably (and already have) go through some guilty feelings like I don’t deserve it (I do) and I’m giving up (I’m not) but yeah, riding high for now! Just sceptically keeping an eye on myGov to make sure they change it over, oh and that I get my backpay.

Some people (like my psychologist) have “checked in” to make sure that getting disability doesn’t mean I’ll be giving up on getting back to work one day. For those people, I reassure them that being on DSP won’t make me stop wanting to get back into paid work, or unpaid work using my many skills, and will in face HELP me to get back into that state. How so?, you may ask, if you’re unfamiliar with how being on the lower JobSeeker payment and having mutual obligations actually creates MORE of a barrier to gaining and maintaining employment, particularly for someone with a chronic illness that fluctuates and is exacerbated by the whole process…

I had started going on a rant about Work for the Dole, but having never done it all I can truly say about THAT is thank flying spaghetti monster that I’ve never had to. If you’ve done it, you might want to help the Antipoverty Centre in its campaign to Abolish work for the Dole by contributing to their survey of WFTD experiences or if you have the means, contribute financially to the GoFundMe.

So, why am I “completely stoked” to have been approved for DSP and not be on JobSeeker? What’s the difference, aside from the payment amount (both of which are below the poverty line and need to be lifted, but JobSeeker much more so)?

The obvious first one would be that I do no have to apply for jobs or complete those mutual obligations like studying or going to meetings or volunteer work in order to get my payment each fortnight. If I was under 35, I could still have mutual obligations though for DSP, which is a whole other kettle of fish. As we see by story after story , Disability employment services are a very expensive way to police people with acknowledge disabilities and illnesses that impact their ability to find and keep work. Generally you get sent to a DES provider rather than a regular mainstream JobActive provider after you’ve submitted medical certificates to Centrelink to get some time off from your mutual obligations. Because you’re more unwell that usual. At some point the exemption doesn’t get approved, because your GP ticked the wrong box, or said it was a permanent condition, and you go through an employment services assessment (Esat). This is a chat over the phone with a Centrelink-employed health work like and Occupational Therapist, and they determine how many hours a week you should be able to work based on this interview. This is given as a range, from 0-7 hours where you’re basically given an extended mutual obligations exemption for up to six months with regular check in appointments to make sure you’re still alive, to 8-15 or 16-30 hours, in which case you’re referred to a Disability Employment Service, who we’d all like to think specialises in getting disabled people into SUITABLE employment or study and has some knowledge or education around disabilities, illnesses and workplace supports.

(I hear some of you cry-laughing, and I can just tell you’ve been through DES at some point. The rest of you stick with me?)

So, if I have employment prospects, why isn’t going to a DES with JobSeeker allowance going to be helpful? Why won’t this be a suitable way to gain and maintain employment?

Disability services company pocketed nearly $1m for barista course lacking basic equipment, inquiry hears

Let me paint a picture of what it’s like looking for work with a mental illness (however I’m sure similar principals apply with any disability, particularly as most people fluctuate in their day-to-day ability to perform to the standards of the world without an illness…)

Hi, I’m Fiona. I have borderline personality disorder, I have a degree in speech pathology but I haven’t worked in the area in 8 years and I no longer have registration. I also have postgraduate qualifications in inclusive education. I stopped working as a speech pathologist due to my mental illness and its impact on my ability to be a reliable worker. When I’m not doing well, my planning and organisational skills go out the window. I become very unreliable. I’m erratic. I’m not going to outline everything here, but I’m not a good employee. Maybe I still show up to work, but it’s very hard to concentrate or to be around people long enough to get the work done. I may have started having problems with alcohol or self harm again. I may just head to Sydney on a whim and call in sick. I may show up work but not be in the condition to work, function, or be responsible for others safety let alone my own.

I’ve had many lots of therapy in the last 20 years. Psychology focussing on anxiety, CBT, medication, throwing myself into exercise (running 5km every morning DOES actually help with my anxiety), a 2 year block of weekly therapy that was thankfully covered by the government doing the conversational model. At the end of that last block I was working with a DES provider to try to get into some sort of work. We went with Disability Support/ carer work.

This DES provider worked with me to work towards getting a job. But there was always the threat of being cut off from payments if I didn’t tick the right boxes, submit the right forms. That does wonders for anxiety filled perfectionists with a ticking mental health problem that’s wanting to take you down.

I figured I could do volunteer work, at a special school, get my confidence up, get me some references. That all worked nicely. Also I got to use my speechie skills in classrooms again which was actually a very good use of my time.

By that stage I’d already been applying for jobs for about a year (I did interviews for so many Speech pathology jobs, locally, in Tamworth, Sydney, Bowral, Canberra, by phone to Albury and Broken Hill, and ones in the Northern Territory and the Pilbara that came with contracts and sign on bonuses. Some went okay, but I was never the top candidate, or some were uncomfortable with the gap in work that wasn’t due to having kids, a couple of interviews I ran out of in tears, and at least two I hung up the phone on. it got harder and hander and I was relieved to be told it was okay to stop trying for those)

But we went all in on the disability support jobs. Applied for all the companies in town, had a few interviews, I actually REALLY liked the group interview process for one, and managed to show off my knowledge and skills in that environment, only to shake my way through the individual one. I got to the point of doing a medical with them, but I had to do a couple of rounds of that to show my mental health was good enough… I got offered a different position elsewhere and took that one on. Casual. It was casual for a year, but I basically had as much work as I wanted.

I probably should have been getting post placement support from the DES provider but I don’t recall hearing from them again.

Alright, so I had a job. For four years. We won’t go into the process of losing that job, but it was mental health, alcohol misuse, and a WHOLE bunch of anxiety. That employer was so supportive to keep me on, and we tried to work with each other to make it happen, while I was accessing therapy and support, but it wasn’t working for me at that time, and I really feel like I let them down, but then I also was letting myself down by continuing to pretend I was okay.

Covid has been a bit of a blessing for me. The coronavirus supplement, having mutual obligations suspended, being able to access services by telehealth, all a blessing in disguise. I’ve had a wonderful GP who was willing to write me medical certificates. And I’ve answered to phone calls and done the reporting to Centrelink as they wanted, and not really had any way to step out of line. This would have continued to mid-year when I was going to be reassessed for job capacity and would have probably returned to the DES system with a 15 hour a week capacity assessment, and have to start working with the requirements again.

I’m happy to look for work when I’m ready. Not now. Now I’m not ready, I’m still doing hours of therapy each week, I still am working on meeting my daily standards as a human being. But I’d like to look for work (paid or unpaid) that uses my skills and interests and now this can happen in my own time rather than following the schedule the DES provider has to work under to meet their KPIs.

Currently I’m required to answer the occasional phone call, and to report mine and my partners income each fortnight in order to get paid. I’m pretty reliable at doing that, though I have been late on the reporting at lease once which meant waiting another day for my JobSeeker payment to land. My fault, but I forgot due to being overwhelmed with other aspects of dealing with existing with a mental illness, and did not treat myself kindly for the mistake. I’m my harshest critic…

I’ve been doing well in therapy, only needing to take a step back when I had Covid myself. I still made it to the group sessions by telehealth, but cancelled a couple of the individual ones as I wouldn’t be able to participate properly even by teams. So, I’m pleased with that , and myself.

I get scared when my psych brings up work and trying to come up with goals around that. I have some vague notions of what I might like to do if I can get myself able to work to a certain standard with the right supports from the employer and my other supports to stay well while I’m there.

Getting DSP means I can do this in my own way, in my own time. I have a little extra money each week. I don’t have the threat of having it cut off for failing to meet a target set by someone paid by the government to police me. I CAN choose to try getting a DES to support me, and there’s a “couple of good ones” in my area that I’m probably going to talk to. But I won’t be with one not of my choosing. I won’t have to do anything to make up hours that isn’t in my interests or that doesn’t help me with my skills or confidence. I can apply for as little or as few jobs that interest me. I can quit a job that isn’t working out and not face suspension of my payment. I have more leeway in terms of how much I can work without my payments going down or being stopped because I’ve been going well for a longer time. More of a safety net to fall back to if pushing myself starts doing more harm than good. I’m not there to meet someone else’s quotas, for a business to refer me to their education wing for them to earn a bonus and for me to study something meaningless outside my cares or my skill level.

There’s always this threat on JobSeeker that you’re going to do the wrong thing, knowingly or unknowingly, and be cut off from your only (woefully low) source of income because computer says no.

I know it’s not all rose coloured glasses from here, but being on DSP is a weight off. A chance to be a little free-er, to be able to take more time to work on myself, being and doing the things I want to, not being chewed up by a machine that’s not working in my best interests.