Friday, July 23, 2010

Hurt and confused

So. It rears its head again. Borderline Personality Disorder. I was at an appointment with my GP on Tuesday, and we were looking for the latest letter from the PsychDoc. My GPs computer is set up so that the patient can actually see information as it is pulled up. I don't know why, and I'm kind of wishing now that it didn't. Anyway, she pulled a letter that turned out to be from last year when I was with BabyPsychDoc Douchebag, rather than the lovely Dr F that I see at the clinic now. And the top line stated (I'm not sure of it verbatim) basically that patient has diagnosis of PTSD and Borderline Personality Disorder (although patient has expressed discontent over the latter diagnosis). Sigh. Patient did not express 'discontent', patient was never actually formerly given the diagnosis, tested for the diagnosis or had it explained in any way. Patient only found out about the diagnosis attached to her name when she saw it in the hospital records whilst in a neurologist appointment. Patient tried to (rather calmly and rationally, I may add) ask for confirmation and justification of this new added diagnosis, only to be met with noone who would actually admit to being the one to put said diagnosis in her file!

That was last September. Although it pissed me off, I let it go, because a) it didn't seem to be impacting in anyway on my course of treatment (as stated before BabyPsychDoc at the time was a complete and utter douchbag for many reasons, a classic line of his was "you seem to be doing better, but its always hard to tell with 'you people' WTF? But I was changed to seeing the Consultant Psych, until the new registrar replaced him,  and she is really quite good) and b)to confront it to aggressively would be to affrim the stereotypes that surround the diagnosis...we wouldn't want a female patient who is actually proactive about her mental health treatment and advocates for herself now would we?

This time, I was pissed and I wanted to do something about it. First, this is now outside of hospital records and in my general medical records which follow me forever, having a chronic medical condition, I need to keep my medical records intact, and although current GP is lovely and it doesn't affect the way she treats me at all, there are others in the medical field who will stigmatise based on this diagnosis...thats just the sad truth of it. If I'm ever in a court case (God knows for what?) it can be supnoead (sp?) If I wanted to adopt etc etc...none of these are issues at the moment, but when you are thinking of something that follows you FOREVER. Second, it creates a distrust in the mental health system I'm supposed to derive support from. It is blatent dishonesty. What other diagnosis would it be acceptable to just sneak into somebody's records and NEVER discuss it with them. How am I supposed to trust what they say with such a fundamental omission in play. This is how it should be. Clinician sees signs and symptoms of a particular disorder, they test their hypothesis against the DSM and through testing. (I've never undergone any of the accepted tests for Borderline diagnosis ie Perry Borderline Personality Disorder Scale) and once they are supported in their diagnosis, they then (here's the important part) sit down with the patient, share their findings and opinions, explain the diagnosis and share the current treatment plan.

I'm not saying that I flat out refuse to accept such a diagnosis. I have issues with the diagnosis itself on conceptual grounds. 5 out of 9 criterion to meet the Disorder. Two people can share 1 symptom and be diagnosed with the same disorder. Statistically there are over 2000 variations of criterion combination that could justify a diagnosis. It just seems to be a very broad brushstroke to me. And any diagnosis that has a 75% female, 25% male split certainly has to be examined in the light of sociological context. That is, behaviour accepted as normal for men, being pathologised in females. Takes us right back to Ancient Greek times when women were thought to suffer from "wandering wombs". It is not at all a far reach to say the broadness of this diagnosis has led to it being used as a wastebin for "difficult" female patient who have the audacity not to respond to the righteous treatment of hubristic practioners, because of course it could not be that their treatment is actually inadequate. And the stigma that comes from such a diagnosis just serves to marginalise and suppress a population that quite often has already had a lengthy history of marginalisation and mistreatment, and should be treated with empathy and understanding. Does Borderline Personality Disorder exist? Most certainly. And it can debilitating for those who do classically fit the criteria. I read some fantastic blogs from people who have accepted this diagnosis, and find it to be helpful in explaining why they see and engage in the world the way they do. Does it automatically apply to anyone with an XX chromosome that self harms? According to the DSM it shouldn't..... but in reality it does.

So, jumping off my soapbox now. Because this is about me. Does it apply to me? My gut says no. After extensive reading, my mind says no. But I am reasonable and open to hearing the professionals opinions. If I can get them to talk to me. I spoke to my Case Manager (another lovely lady) this morning during our appointment and told her what I had seen, and let her know that I was going to bring it up at my appointment with Dr F on Tuesday, that I just wanted to get all of it out in the open, rather than it being dealt with in an underhanded way. I have no idea if it is the enduring opinion of the professionals or just the work of Dr Douchebag. I was just letting her know in case she wanted to be at the appointment, as she has been my Case Manager since the time of Dr Douchebag when this letter was written. She was quite supportive about it, without ever actually saying whether or not she agreed with the diagnosis. She is a psychologist and they can't actually diagnose here in Australia, and really I guess its probably not her place to speak for the team. I think she understood my frustration about the manner in which it was handled, although she did express how incredibly difficult it is to get something like that removed from one's record. I think she still felt it was important for me to find out once and for all, and to feel like there was a transparency in my treatment and not a me versus them thing going on. She also said that if it were her, given the implicit stigmas that can be attached to this particualr diagnosis she would want to ensure that it was thoroughly assessed and valid before it was attached to her file. So all in all, a positive response, and I am sure it will be the same with Dr F. Not necessarily that they will agree with me, but that they will at least be open and honest with me about it... and that's all I ask.

But then.

I went to therapy. (D) is a private psychologist, with no link to the public system. She asked what had been going on over the last few days, and I let her know, about my talk with (M) and the upcoming appointment with Dr F. Now, keep in mind, I didn't actually ask her whether she thought I had this disorder. Why? Well, first because she has stated before that she feels that there is overly too much emphasis on labels and that it takes away from the ability to truly 'see' the person. And second, because I didn't want to know. Seems a bit hypocritical, no? I want full disclosure from the Public Health professionals, but I don't want to know what my therapist thinks? And maybe it is. But her opinion is NOT written down in my records, she cannot officially diagnose me, so her opinion can't hurt me in that sense. But it can sure as hell hurt me in a more practical sense. Unfortunately, I guess by bringing up the conversation she assumed I wanted to know her opinion, and I did nothing to dissuade her from that assumption. Totally my fault. Well, 99% my fault. So she proceeded to give me her take. First, labels tend to be more of a distraction from seeing and understanding the person (see I do know her!), second that she has issues with Borderline Personality as a disorder, for similar reasons to what I mentioned above. But that she does believe that people can suffer from (and I'm paraphrasing) a disorder of their sense of self... I do love how she believes that semiotics make much of a difference at all. And apparantly, a good part of her studies, she focussed on Borderline Personality (a disorder she has issues with, so I'm a little confused) And she does think that some of the criterion I don't think I fulfill, I actually kind of do. For instance, abandoment issues. I certainly don't display the traditionally thought of "Borderline" behaviours around it... ie lack of Object Constancy etc... but that you can't have the experiences I did in infancy and childhood, and not have abandonment issues. She admitted she couldn't quote the DSM verbatim, and would have to have a look at it, and would be happy to bring it in and go through it with me. At this point, I had gotten pretty quiet.... and yes, a little hurt and upset. I told her that I didn't want her to bring it in, and in fact, I hadn't asked her opinion. At which point she stated "I'm a little confused", to which I replied "Me too".

So that's the sum of it. I think I would have been better not knowing her opinion. And now I'm kind of stuck between not wanting to know anymore and needing her to actually explain her position because I don't know if she thinks I have it or not, and now its the elephant in the room. And yeah, my feelings got hurt. But I also have to buck up and be prepared to face the truth, whatever that is, and part of that is being prepared to listen to others opinions. So i think I need to hear her out in full, and of course (M) and Dr F as well, and then test those opinions against my own. Afterall, logically, living with a mental illness, whatever it may be, can distort ones own perceptions and insight. It doesn't mean I have to just unreservedly accept others opionions, but, if they've shown themselves to be trustworthy, and they have taken the time to know me, and try to understand me, which all three of these women have, then I should at least listen.

So, for now, I'm left hurt and confused

1 comment:

  1. I can understand why you are feeling hurt and confused about BabyPsychDoc's sneak diagnosis. He should have discussed your diagnosis with you. I don't understand why psychiatrists are so reluctant to discuss these things-- mine will only talk about it when I ask him specifically. And I can't even imagine how tarnished my medical records are, especially with several hospitalizations and anorexia. Oy vey.

    Wishing you well,