May 08, 2008

Is it BPD or is it Lyme? A personal story

If you have never heard of BPD it stands for Borderline Personality Disorder and I will quote the psychiatrist's Bible, the DSM IV to explain what it is:

A pervasive pattern of instability of interpersonal relationships, self-image, and affects, and marked impulsivity beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:

1. Frantic efforts to avoid real or imagined abandonment. Note: Do not include suicidal or self-mutilating behavior covered in (5).

2. A pattern of unstable and intense interpersonal relationships characterized by alternating between extremes of idealization and devaluation. This is called "splitting."

3. Identity disturbance: markedly and persistently unstable self-image or sense of self.

4. Impulsivity in at least two areas that are potentially self-damaging (e.g., spending, sex, substance abuse, reckless driving, binge eating). Note: Do not include suicidal or self-mutilating behavior covered in (5).

5. Recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior.

6. Affective instability due to a marked reactivity of mood (e.g., intense episodic dysphoria, irritability, or anxiety usually lasting a few hours and only rarely more than a few days).

7. Chronic feelings of emptiness.

8. Inappropriate, intense anger or difficulty controlling anger (e.g., frequent displays of temper, constant anger, recurrent physical fights).

9. Transient, stress-related paranoid ideation or severe dissociative symptoms.

Now, in Dr O's hospital I fairly recently (about two years ago -- which is recently compared to how long I have been going there) discovered upon reading a discharge note that my official diagnosis, in the hospital at least, had been paranoid schizophrenia, bipolar mixed state (or something like that) and "borderline traits". That last threw me for a loop. What did that mean? And who wrote it? Did Dr O think I had BPD or did the hospital?

This was not an unfamiliar accusation: in St R's and at the university hospital, Lynnie had been told that I "had BPD", a diagnosis she flatly and decisively denied. In fact, when she told them that I was not my usual self, that I was not "like this" at home or when well, that ordinarily I did not have a temper, was known never to yell or scream or be aggressive -- when she told them this, they then decided that I had "acute BPD."

You have to understand that a personality disorder is essentially something you are born with, that may seem to manifest itself in adulthood, but which really begins in childhood, and which continues throughout one's life. As I understand it, being part of one's personality, these disorders are very hard to treat or change and usually it is a matter of learning to deal with them, adapt to them and work with them, rather than actually reverse them.

So to diagnose an "acute" personality disorder is a contradiction in terms and well-nigh ridiculous. It most certainly is torturing a concept that is not appropriate into fitting the person around whose neck you wish to hang it. Acute BPD, if it existed, could be used to diagnose anyone who had a temper tantrum or made a suicide attempt, because those are acute behaviors and apparently anything done once would be fair game. But all that aside, here they were telling Lynnie that while in my normal life I fit none of the categories, except perhaps self-mutilation (and that most likely for reasons that were different than in BPD) , while I was ordinarily even tempered, appropriate, emotionally rather stable and not particularly impulsive, in the hospital I developed an acute case of BPD. And this was so marked that it had to be diagnosed as part of my illness.

She demurred and continued to say they were absurd and wrong throughout. Doubtless she would say the same to Dr O and her hospital. But when I read the discharge summary at Dr O's hospital, this time I myself was incensed. Why? Well, I'll tell you why. Because 1) only women "have" BPD, only women are so dismissed and discarded into such a wastebasket diagnosis; men are taken seriously; they might be called "anti-social" or aggressive, but they would not be dismissed 2) BPD is a diagnosis given to women who cause too much trouble, who are loud or who bother people or who ask for too much or otherwise make themselves a pain in the ass, in other words, it is a diagnosis given to someone a doctor doesn't like very much (this was most certainly true in the past at any rate) 3) it meant they were imputing certain standard interpretations to my behavior that were simply wrong, and I had no way of explaining or clarifying...moreover, they had done so without ever asking me to tell them why I did what I did.

I was particularly incensed when Dr O admitted that she had written the Borderline traits part of the Dx. What did she mean by that? I asked, not a little angry.

"Well, you do have some borderline traits."

"I do? Name them. I defy you to name them."

She looked at the list I'd copied from the DSM IV. "You fear abandonment."

"I fear abandonment. What does that mean? By whom do I fear abandonment? And the symptom is "frantic efforts to avoid real or imagined abandonment" not merely fearing it. Who wouldn't fear abandonment? If your husband were going to abandon you, wouldn't you fear it? That's nonsense. I don't "fear abandonment" anymore than anyone else! Go ahead, name some other trait that characterizes me, that fits me now, when I am out of the hospital, since you say I have these borderline traits as part of my personality."

"You self-mutilate."

"Okay, for the sake of argument, I'll grant you that. I won't even argue what I think does matter, which is the question of why I do what I do. Touché. You get that one. But you wrote "traits" so name me more."

She looked at the list and then put it down. "It's only traits, Pam. I didn't say you had the entire personality. But you do have some of the traits. And frankly I had to write something. It affected your treatment."

I never did find out what she meant by that. I assume that she meant that the staff insisted I had BPD. I can see why they would, because they had no way of knowing, without trusting what Lynnie told them and why should they do that? that I did not usually have temper tantrums or suicide attempts or scream and yell and throw things etc. To them I seemed extremely volatile and on an emotional rollercoaster all the time. Some people were the good ones and others were the bad ones, and never the twain should meet, so I seemed to say. All these things would fit the BPD Dx. So I can see their point. Except that they did not listen to Lynnie tell them that this was NOT me, I was not like this when out of the hospital. All they wanted to believe, or know, was what they saw in front of their faces. So in fact, they did not want to know the truth about me, only the me that appeared on their unit, ill and disheveled and screaming more often than not.

What makes all this so sad and so angering to me is that I did not know 1) that they were diagnosing me this way 2) WHY I was like this when ill, only that I felt out of control 3) that every time I ended up in the hospital at least after Y2K was because I had Lyme disease and the antibiotics were not working or I was not on them at the time.

Even this last time, when was it, in Oct and Nov of last year at "Brook Hill". There I came to realize that it was Lyme that had caused my symptoms, Lyme that had exacerbated my psychosis and put me in the hospital, Lyme that was causing my rages and sudden "suicidal urges." I knew this because Lyme also caused acute dyslexia and a weird sort of extreme startling that made my hands fly up to my chest and made me shriek when someone knocked softly on my door. As soon as I experienced those two symptoms, I recognized the problem and knew to ask for antibiotics...and I also understood where the other behavior and uncontrollable emotions were coming from. But did the staff there believe me, or help me or understand? No. Most likely they too decided that I had BPD, that Lyme was merely incidental or a coexisting condition but not the actual cause of my so-called personality disorder.

This whole business really infuriates me. It should not be so. I realize that hospital staff can't be expected to immediately recognize Lyme as causing someone's strange BPD symptoms. But I think they should listen when a close relative tells them No she is not like this at all. This is not she and you should find out why she is behaving this way...I think they should listen when a patient explains that an infectious disease causes and has always caused these particular neurological symptoms, which cause certain behaviors due to the neurological changes. I believe hospital staff owe it to the patients to LISTEN, not to judge and throw people away just because an illness makes them difficult or even, as I have been called too many times, impossible.

This is the point that Debbie Finn made in her wonderful paper in the Yale Journal Of Humanities in Medicine, I think. That just as schizophrenia will eventually be found to be fundamentally a "medical" illness, whether of infectious or genetic or some other origin (the way the syphilitic insane were found to be, well, sufferers of an STD), so too will other so-called mental illnesses fall before the power of better diagnostic instruments. If Lyme caused both my psychotic and my supposed BPD symptoms after Y2K, who is to say that it doesn't cause them in others, at least in some people? Acutely at least. And if Lyme can cause acute BPD, or borderline traits maybe it could be a model for the real cause of BPD, such that BPD could be taken out of the MI category and might be treated as a true illness with a cause and a cure. No more dissing women or dismissing the difficult.

Posted by pamwagg at May 8, 2008 01:34 AM | TrackBack


I agree-
I am an adult MH case manager (Hi Pam!) from Minnesota and I agree that BPD is often counter productive as a means of identifying a disease and does little to suggest a course of treatment. People throw their hands up and say "they're doing it for attention". We all know it is not that simple. I've seen everything from Clozapine to ETC as treatment for what is a personality disorder. Long term recovery is rare.

I have read Divided Minds (which one of my co-workers has it now?)and many of your blogs and it seems clear to me that your psychiatric problems are related to paranoia in most instances and this is an Axis I problem not a personality problem..

There are male patients diagnosed with BPD but they are less than one in ten...they are also dismissed as "pains in the ...."

Posted by: Steve at May 30, 2008 02:37 PM

Thanks for the reference, Pam. I'm sorry you had such a rotten time. Sometimes I think the caregivers blame the patients when the treatments don't work, and that's why there are these stigmatizing diagnoses. A little bit more humility (from the caregivers) would be therapeutic.

Posted by: Debbie at May 10, 2008 07:27 PM

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