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This is the story of two letters. It has a happy ending.
A while back I had a discharge letter which gave a diagnosis of “Moderate Depressive Episode (fine) with Emotionally Unstable Traits (umm… what?)”.
After digging through some information, I established that this meant I had elements of Emotionally Unstable Personality Disorder, which is the UK equivalent of Borderline Personality Disorder. It is,
‘characterized by a definite tendency to act impulsively and without consideration of the consequences; the mood is unpredictable and capricious. There is a liability to outbursts of emotion and an incapacity to control the behavioural explosions. There is a tendency to quarrelsome behaviour and to conflicts with others, especially when impulsive acts are thwarted or censored.
Two types may be distinguished: the impulsive type, characterized predominantly by emotional instability and lack of impulse control, and the borderline type, characterized in addition by disturbances in self-image, aims, and internal preferences, by chronic feelings of emptiness, by intense and unstable interpersonal relationships, and by a tendency to self-destructive behaviour.’
This is not very like me. In fact, it’s pretty much the opposite of me. So I felt it was kind of a problem. For a start, inaccurate or misleading medical records = bad; they can affect future treatment and care as well as a range of other things (think employment, education, even stuff like travel insurance). There are a whole realm of people who would justifiably be concerned by the prospect of emotional instability, and might reasonably adjust their attitude accordingly. In the absence of such traits this is Not Helpful.
So why was it there? Well, this is an interesting example of psychiatry!fail. You see, in the ICD and the DSM (the two main diagnostic texts used) the only actual mention of deliberate self-injury is in the EUPD/BPD sections respectively. These say things like:
“A liability to become involved in intense and unstable relationships may cause repeated emotional crises and may be associated with excessive efforts to avoid abandonment and a series of suicidal threats or acts of self-harm (although these may occur without obvious precipitants).”
http://www.who.int/classifications/icd/en/bluebook.pdf (p. 159)
“recurrent suicidal behavior, gestures, or threats, or self-mutilating behavior”.
Some self-injury is carried out in this spirit. Some isn’t. But I was self-injurity, and because there’s no other way of describing it within the current diagnostic system, ‘emotionally unstable traits’ is what they went with. (In the next edition of the DSM there’s a proposed revision to include Non-Suicidal Self-Injury as a separate behaviour. My guess is that the next edition of the ICD would follow suit. So in five, ten, fifteen years I wouldn’t be considered particularly emotionally unstable at all…)
Anyway, there are still some important reservations. Firstly, traits of personality disorders,
‘ tend to be persistent and appear to be the expression of the individual’s characteristic lifestyle and mode of relating to himself or herself and others…[they] are deeply ingrained and enduring behaviour patterns, manifesting as inflexible responses to a broad range of personal and social situations’,
are ‘not directly attributable to gross brain damage or disease, or to another psychiatric disorder’.
My supposed traits were based on my actions and attitudes over a couple of months, and I was having a depressive episode at the time. Not so much with the persistent. On top of that, personality disorders need to be particularly carefully considered in young people. Emotional instability is pretty much par for the course for teenagers, for example. It’s hard to establish the significance and endurance of these behaviours before someone’s in their mid-twenties.
I wrote a long letter to my psychiatrist setting out my reservations and my reasoning. He called me back to apologise and asked if I wanted to meet and talk it over. Yesterday I went to see him.
He apologised, again.
He recognised that the addition to the diagnosis was inappropriate and unhelpful.
He said they were wrong to include it.
He acknowledged that any changes in my affect were down to depression and hospitalisation rather than any personality disorder.
He said that both he and his associate had taken my response on board and learned from it.
He told me they will be more careful in the future.
He thanked me.
It was my first real experience of advocacy, and it was good. I feel better for knowing that maybe the suggestion of emotional instability will be applied with more discretion, that maybe the people who really struggle to regulate their emotions will be more likely to be taken seriously, that maybe ‘emotionally unstable’ (with all its overtones of sexism and hysteria and feebleness) won’t be used to describe people who are sad or struggling or overwhelmed.
And I’m grateful to my new doctors and people for supporting and encouraging me, and I’m really grateful to my old psychiatrist for being so open and reasonable and good and decent, and for listening to me.