Lived Experience Forum

[Ali585]

I feel like I might be opening up a can of worms here. But anyway…

I had some really bad experiences last year which I want to share and ask to hear if others have had similar problems?

But actually I feel like I need to start by acknowledging my own responsibility. I was very unwell last year and at times my behaviour was unreasonable and hard to manage. I am NOT complaining about all treatment I received. There were things that happened to me – like physical restraints and forced IM injection – that were horrible to experience but honestly were the only way to manage the way I was behaving. While I wish those things hadn’t happened I understand why they did and I am not complaining about that.

What I want to talk about is the general attitude and judgement I experienced because I am diagnosed with BPD.

A bit of my background… I have struggled with this since I was 15. I have gone through several periods where I have been quite unwell but overall I would say that up until last year I was managing well. I got through my university studies, was working full time and was a respected and valued member of my community. Last year I became really unwell and ended up detained in hospital for over 2 months. My experience in that hospital was ok (as good as that sort of admission could be I guess) but it was on discharge where I felt really let down.

I think in some ways I had been “spoiled” with the mental health team in my local country town. As I worked with these people as a health professional as well as then becoming their patient – they knew and understood who I was when I was well and really worked with me to support me to get back to that.

On discharge from hospital I had been advised not to return home to my country town but to remain in Adelaide to receive treatment (as there was only limited services available at home) also a notification was made to AHPRA and I was unable to return to work until advised that it was ok to do so (which was fair enough really)

The community team in Adelaide that I was discharged to pretty much seemed to write me off. The plan made by the hospital was that I would see a particular doctor for a specialised therapy for BPD. However once discharged they community team didn’t make any appointment – when I tried to call them to find out what was happening they told me that he had finished their rotation and wasn’t working there. No alternative was offered. It took about 2 weeks of phone calls from my GP before they made an appointment with another psychiatrist for me. And then no help was given. Basically I was told that the only treatment was DBT and there was a 1 year waiting list so there was no point even putting me on the list. With both the mental health nurse and the psychiatrist there was an attitude that I was a write off. That I was a problem, had always been a problem and would always be a problem. There was no consideration of the fact that just a few months before I was a functioning member of society – that I wanted to return to being that again, that I had moved 800km on advice from hospital to access their “service” and that I had been forbidden to undertake my normal occupation until I received treatment and was cleared by a psychiatrist.

During the time I was under the “care” of the community team I had multiple admissions to ED at another hospital with suicidal ideation and attempts. I was already in a bad place and the attitude that I was a hopeless case just made things worse. Similarly when I was admitted to the ED during that time I encountered a similar attitude. I appreciate that as a “frequent flyer” I must have been frustrating, and as I said at the start my behaviour was fairly bad frequently. But I was in a place where my whole life seemed to have fallen apart and no one wanted to help me fix it – they just assumed that I was going to be broken forever. Again I want to draw a distinction here I’m talking about the attitude not actions that I didn’t like. So for example there was a plan in place that I would be discharged as soon as I was medically cleared – I didn’t like this but I admit it was in my best interests. But an example of the attitude problem was when I explained the lack of support from the community team I was told that my expectations were unreasonable (despite the fact that my GP was saying the same things!)

Thankfully I had a great GP who eventually after about my 5th crisis admission to ED managed to find a private psychiatrist who could help me. I am thankful that I am in a position where I could afford that but I can’t help but wonder about those who aren’t. I also know that it was hard for my GP to find a psychiatrist willing to take on a patient with BPD.

I can now say that I am reclaiming my life. It’s been 5 months since my last admission and I have been stable. I have sent off an application to AHPRA to get my registration back so I can return to work. I wish that I could go back to the people who wrote me off and show them who I am now. Not because I want to feel validated but because I want them to see that people with BPD aren’t a write off – that we can recover.

Was I frustrating and hard to deal with? Yes and I admit that. But did I deserve to be denied support? Absolutely not.

[CherryBomb]

Hi @Ali585,

It's disappointing to hear about the 'care' you (didn't) received once you were discharged. I've heard a few people on here comment on how services are accessible once you're in crisis, but then it can be difficult to follow up with preventative measures, particularly in rural and regional areas. Perhaps @Former-Member can sure some thoughts on this, as I understand that she used to live rurally. 

Sadly, stigma associated with BPD not uncommon. It's often thrown in the 'hard to treat' basket, but the reality is that it is treatable and people, like yourself, can lead happy lives.  It just takes adequately trained and well-resourced services IMO. What do others think?

There's a few members on here who have had previous discussion about this issue. @Ellie and @anthariamac have written about stigma and BPD in this thread, as well as @BPDBunny in this thread. Also @Billamba has also experienced her view on stigma here. I wonder if any of these members can share their experiences with receiving care or treatment in the community?

CherryBomb

[Former-Member]

Hi @Ali585

Thanks for sharing your story, i'm not sure if we've crossed paths on the forum before so welcome from me 🙂

You have some good insight to your situation last year, and I can imagine how terrifying some of those experiences in hospital must have been. I experienced some thigns in hospital that really felt awful at the time but not to the extent of your experience but I also feel that they were necessary to helping me be well/safe at the time.

I became really unwell at the start of last year, kind of similar in that I was working full time, respected teacher (i think/hope!), mum etc. And i had to go to a regional hospital 100km away from where we were living. I spent a month in hospital and was then advised it would be better to move/stay in the regional town where there were more supports and would be available to me 'in home'. But i kind of felt for a while after I left hospital that i'd been forgotten none of the in home supports had been organised and took nearly 3 months to get organised. Luckily though I had an awesome psychologist (private) who was and still is a major support, and helps me stay on a healthier track/path. But having to move has definitely had its down sides!! i.e. losing some social support, now i've just tried to go back to work in a new site (much more challenging than my last!) and so on.

I've not experienced too much stigma as such, but I've noticed and felt some since i've been back at work which is making me more anxious, but I have major depression, PTSD and anxiety so a little bit different reaction than to BPD from what i've read from members on the forums 😞 I agree with what @CherryBomb said though, that there are treatments out there, its just, unfortunately, seems to be really difficult to access them! I hope that your psychiatrist is able to continue to help!

LJ

[Ellie]

When I lived in a large, rural Victorian city, the care I received from the mental healthy team was abysmal. They acted as though BPD was some sort of contagious disease and they cut me free as soon as they were able. I definitely felt the stigma of having borderline personality disorder.

Circumstances saw me taken into care in a much bigger city, but 1.5 hours away form my original home base and I found a world of difference. The staff in the psych unit were really only doing their job as required, although a couple of them were excellent and understanding, but the after admission care has been amazing. I had to sell my old place and move to this new city, but the move has been well and truly worth it. I've now begun a DBT program where the the facilitators are kind and encouraging. My mental health team is also right on the ball and I'm getting ongoing help from them.

So I'd have to say...... location, location, location! I know of people living in our capital city who aren't getting the care they need and have no hope of entering into a DBT program unless they pay for a private program. Fortunately mine is Government funded and I don't have to pay a cent. There are so many people out there who really need a DBT program, but because of where they live, they'll probably never get it. I really feel for them and feel privileged that I was able to get into the program so quickly, which is why I'm determined to make it work, even though it's proving to be more of a commitment than I ever imagined. It's tough going, but hopefully it will pay off and I just hope that very soon, the Government initiates more DBT programs throughout the State and indeed all of Australia so that the majority of sufferers who are currently falling through the cracks can get the help they need.

Ellie.

[Ali585]

Thanks everyone for their comments.

I just want to clarify the service I received in the rural town was excellent. It was when I got to the city that I had problems. Which was very frustrating when I had been told to relocate to access better "services". I think that overall moving was a bad decision for me. I have returned back to where I'm from and finding it much better.

[Bobby2015]

Good Evening Ali585,

I also had difficuty in obtaining suitable assistance for my bpd. In 2005 l was made a involuntry patient for 10 dys. Upon reaese l was told to obtain my own medical assistance privately in the community. For me thats where the trouble started as l had no GP, Psychiatrist or psycholgist due to MY behaviour. I fought and fought for help and everyone said go public health but they said no because l was not crittical or homeless.

Fast foward to 5 months ago the same organiztion agreed to assist me and now have a case manager/psychologist and psychiatrist and a phams worker and a wonderful GP, it was a very hard fight and was knocked back because of my bpd

[ivana]

Hi @Ali585,

I dont have BPDmyself but have heard from other people that many doctors view patients with this as being "time wasters", "attention seekers","recourse suckers" and so on.

Personally i don't think your experience of restraints or other aggressive treatment that you mentioned as being ok.Even if some patients are ok with this or even if it is effective to "manage the symptoms" for them,being effective does not equal being ethical and right.

For example,if there were some unruly and disruptive children in a day care centre,it might be effective to strap them down,but wouldn't it still be abusive,degrading and a breach on human dignity?

I have witnessed people receiving this sort of treament both in E.D and ward settings and not once did it appear to be for the patients benefit.Instead it always seemed to be for the staffs benefit -Ie:"managing" and controlling the behaviour of the patient so that the staff members would feel less stressed.

I don't believ using restraints for "behavioural control" purposes is ever justifiable or ethical-whether in a hospital,daycare,or other setting.

Thats not to say that being a nurse or childcare teacher doesn't come with special challenges, but non abusive solutions need to be found that dont affect peoples dignity/self worth or disempower them etc..

[PeppiPatty]

Dear @Ali585...all my friends are here, It's great to see you @ivana and @Ellie...LJ!

Hello@Former-Member :0) How are you?

I haven't 'met,' you yet... @Bobby2015 so hello how are you?

 The most exciting time I had with someone with the condition BPD

we spoke for a long time about herself and her needs in that moment  

She actually said that she is a Proud Consumer deaing with BPD ( and other unmet needs).

We had a fun time. She brought her son with her and I was asking him a LOT about his Primary School. I also commented  

of my needs and how

overwhelmed I get.

 I remember someone online talking about how...out of the blue...I think it was @Mazarita who commented that someone she was sitting with in a group of family and friends ; @Mazarita didnt say anything about herself or her past but the lady sitting next to her  felt safe anough to start talking about her SH  and other unmet needs.