Anna

Yeah it's interesting. I have relied on Doctor Google, as I call it. So my own internet research, to actually gain a better understanding of my diagnoses because there's very little information given. What I've found is that I've been given the checklist of symptoms, but what it actually means for me and what it means in terms of treatment, and what it means in terms of prognosis, all of that hasn't been given to me. And I've had to source out that information myself. I've relied extremely heavily on the internet, and I'm grateful that it's there because otherwise I really would know nothing.

I think the main thing for me has been really the experience with ECT. It's like yes, one does try everything because it is a horrible state to be in. It's not something I'd wish on my worst enemy, to feel so desperate and vulnerable and incapable of doing even the most basic tasks. Like I'd just get to the point where - it's not that I don't get out of bed. I do get out of bed because I still have to be a carer for my eldest son. But it's that - I struggle with basic conversations. I struggle with talking to anyone. I struggle with the bills. I struggle with - just doing cooking, shopping, any of that. I just get to the point where I become hyper-sensitive.

And yeah I have tried as much as I can. For example, I did do a research, I was a research subject for the [treatment] through [research centre]. And that treatment really helped. So I always see, you know, I'm always looking to see what sort of research is available because I'm keen to not only improve my status but also to help that if there is a new treatment available other than the dreaded ECT and medication, that I'm there saying yes, there is something else out there. Please open your eyes and see what else is there.

But I think it's really, really important to, I guess, recognise that there are things in the environment that do have an impact on us and how we're able to manage and cope. And that needs to be considered I think first and foremost.

And it's interesting that the current psychiatrist again, she's actually looking at the impact that being a primary carer over so many years has had on me, and how that influences my ability to cope now. Because of the cumulative effect of that, and the frustration and the desperation that I've experienced in that role is important.

I mean she took me on by fluke. You know, I just think she's the best thing. Like I've had so many psychiatrists and they've all been pretty much the same in terms of their approach and attitude.

How would you characterise the approach and attitude of all the psychiatrists you've had?

They're just an arrogant breed. I don't want to say this because a lot of people won't be happy with me, but they tend to be very egocentric, very arrogant. And, you know, it's just like, 'We know and you know nothing. So you're the person with the problem and we know how to fix it,' and that's it, end of story. No arguments and no further discussion required.

So I really got to the point where I absolutely hated the psychiatric profession. But now having met this one person I think, 'Oh well, maybe they're not all that bad.'

But yes, borderline personality disorder seems to be a bit of a flavour of the month kind of. And yeah, now I've been diagnosed, apparently there is an overlap between that and bipolar, especially rapid cycling. And it's often misdiagnosed. So again, it would be nice if people would just take the time, because obviously they have different treatments. And people, doctors should realise that if they've diagnosed something and the treatment doesn't work, then obviously they're barking up the wrong tree. But I think they get so caught up with it.

And again, and I've said this, I'm sorry, I'm really down on the psychiatric profession. Because I think, hey, they do 12 years of schooling and yet they seem to diagnose everyone with the same thing, give them the same medications. Whether or not that's just because they get kick-backs from the pharmaceutical companies. I'm becoming a bit cynical about this whole thing. I think it's really at the end of the day a pretty cushy job because you don't have to work hard, you just diagnose everyone with the same thing.

And you know that's been my experience in both the public and the private sectors. Because patients do talk amongst themselves and we do compare notes. And yeah it's interesting.

Well it might sound trivial, but just even sitting in the garden with a cup of coffee or just lying on the bed and just being in the moment, and just hearing what's there. And just having that break, because I tend to overthink things I think. So it's just having that quiet time, yeah, that I've been trying to utilise.

I have had community services involved, and they have been absolutely fantastic and extremely supportive. And yes they do allow me to, you know, work on a care plan. And they do allow me to have a say in how I would like to be treated and what I feel I need. And you know that is absolutely brilliant.

And yeah, I would like to say that the community organisations that I have been in touch with, they deserve a really good rap. But unfortunately they don't make the decisions when it comes to clinical stuff. So...

Could you talk a bit about how they've done that? How they've given you that support?

It's a case of really sitting down and talking with me, rather than to me, about where I see my life going, how I feel I need to be supported, what resources they can use to make that happen, to have constant contact, to be appreciated, regardless of what phase I am in my illness. So whether I'm doing well, whether I'm manic, whether I'm in a depressive episode, it's still being spoken to with respect and there's a lot of dignity there.

And it's the total, it's a polar opposite to what I've experienced in the clinical side, put it that way. But unfortunately they're not the decision makers at the end of the day. They can only recommend, and often their recommendations fall on deaf ears because senior medical staff still very much have the view that they are you know, the be all and end all, whatever that saying is, and they're the ones with the clout.

So even though you know, I've had the support during what do they call them? The board hearings, review board hearings, and I've been supported in that context, at the end of the day it really matters what the psychiatrist says, not what the community organisation says. And I find that you know until they actually work as a partnership and they can do the same thing, then it's going to make it really hard for me to actually find my place again.

And the whole experience whether I've been in public or private has been one of being told what I need to be doing to get well, and what I will be taking and what treatment I will be doing. And quite often if I've gone in as a voluntary patient, they make me involuntary because I don't agree to their treatment. And of course being an involuntary patient, they can do what they like with me. So in terms of supported decision making, there has been absolutely none in the hospital system.

That however I can thankfully say has changed just in the last two months, where I have managed to get a really fantastic psychiatrist and she's very eager to have my input. She says it's a partnership. And it's a really big thing because it really gives my dignity back and respect to me as a person.

And for the previous seven years, to be treated almost like a dog in a pound is something that I just have really, really struggled with. And it's been to the point where I'm really, really actually scared to go into hospital, even though I recognise myself that it's something that I need to do because I know that my life's in danger, I feel totally unsafe. I put my children in really difficult positions because they can see me at my lowest, and attempting to self-harm and all of that, which is I know really detrimental to them. But when I get into that space I don't think rationally anymore.

So I don't think it had really worked. And that's the one thing that my psychiatrist currently, she's happy to work with me actually on that, and say, "Okay, well if it's not working why are you on it?"

And I said, "Well because everyone says I should remain on it". And she's like, "Well if it's not doing anything, and in some cases it doesn't, then there's no point and we need to start weaning you off it and look at psychosocial issues that might be impacting instead". Which is I think a very progressive way of thinking and one that should be adopted more regularly within the medical field. So...

Wow. So you're currently working with her about...

Yes. So yeah, I mean I just think the person that I have who, I mean she took me on by fluke. You know, I just think she's the best thing. Like I've had so many psychiatrists and they've all been pretty much the same in terms of their approach and attitude.

I find there are a lot of people who are wanting to understand, but don't get it. And it's interesting with one organisation just recently, a mental health organisation that I expressed that you know I go into my downers, as I call them, and these can take several weeks. But I didn't elaborate on that. I just said, "Oh you know what if I can't do this because I end up you know, being sick again?" And I don't call the mania or normal patches being sick, I call the depressive episodes because they're the most debilitating for me.

But yeah, she said, "Oh look, we all have sick days. And you know that's just the way it works". And I thought you really don't get it, what it actually means, and I think what people need to realise is how terribly debilitating it can be, to the point where you can't cope with life anymore, and you can't do anything anymore, that a general person of the same age and same life experiences can do. It carries on for weeks at a time. And it just affects every part of your life - your social life, your work life, your everything.

And it's, yeah, it's really something that I would love to get rid of, because I mean I'm at the point now where until this becomes more managed and controlled, I am unemployable because no employer is ever going to give me five weeks of leave every three months.

Okay. The whole recovery thing, it's spoken a lot about, certainly in the circles that I've been in. And for me it's been very elusive. I haven't recovered. It's a hell of a long journey. I'd like to think that there is such a thing as recovery, but I'm not so sure in my case whether there ever will be. Because I've been told, that now that I have this stupid illness that it's pretty much what I can expect for the rest of my life.

So it then becomes, well how does one best manage? So I think maybe in some instances the recovery thing is an end goal that cannot be reached, and might lead to extra frustration. But if we can just bring it back a little bit. Like we're going from one extreme to another I think. If we can talk about managing and living with and surviving with, I think that's more easily achieved. Because I think even the recovery thing put too much pressure on patients.

I think with the whole recovery talk, I know it's a model, but I'll just call it talk, there is this expectation that people will recover and that they can influence their own recovery and that they should be doing that. And that it's only a transient condition and yeah, everything should be fine.

And I think it's even with relatives and friends, the understanding's not there that some mental illnesses are there for keeps. And it doesn't matter what you try and how much you try to change your own thinking and all of that, it doesn't actually halt the progression sometimes of, you know, your good times and your bad times.

And you know, it's like why aren't you trying? Why haven't you fixed this already?

And I actually had, she was a very good friend. She's not anymore, and that's another thing that I failed to mention before, that I've lost all my friendships because people say, "Can't you be positive for a change?"

And with the media, it's good that they're having stories about mental illness, so that hopefully it reduces a stigma, but it also again perpetuates the fact that the person's responsible for their own state and that they should get over it. And it's not a case of getting over it. It's just like, you don't just get over diabetes, or you don't get over cancer in some cases.

It's something there that you just have to learn to manage, and I wish people would understand that. Because I've found that really, really actually quite hurtful and devastating, because I have lost all my social connections because people don't understand that this is not just a two-year thing. It's something that I'm most likely going to have to manage now for the rest of my life. And you know I try and manage the best I can, but it's not always possible.

I still think and I do believe very strongly in that the whole education for people in the clinical side needs to totally change. Because even though one reads that, you know, things have come a long way in psychiatry in the last 70 years for example, it's my experience that really the whole attitude towards people hasn't changed. I mean I wasn't around 70 years ago, but from what I've read and the comparisons that I draw, there hasn't been much of a shift.

And you've got very much medical model versus the a more holistic sort of person-centred approach. And that can be rather confusing too, and rather frustrating. And that's what I've found frustrating, I wish the community organisations would actually be the ones who determine my treatment rather than the psychiatrists. And even the nurses. There have been a few exceptions amongst nursing staff, but a lot of them I have found have been terribly judgemental in a very negative way and haven't seen me as a person. And that's the other thing too. I mean I sometimes wonder why they're in that field when half the time they stand in the nurses station talking amongst themselves, what they've done for the week. And then they say, if I want to go and talk to them, it's like, "Oh sorry, we're busy".

So yes, the training, the education, needs to change in this whole area, in the medical area, because it shouldn't be a case where there are exceptions to the rule. It should be the other way around.