Ali585Senior Contributor
experiences of stigma for BPD
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.
