Tonight’s second post…
Today I had an appointment with Dr C. He is a psychiatrist in the public system I started seeing in September last year basically until Dr A took over my care. To fully explain the situation would take more time than I have tonight, but the short version is Dr C initially misunderstood my mental situation which led to incorrect treatment decisions which is what led to me falling apart. Maybe even the correct decisions might not have prevented me from falling apart but we’ll never know.
Dr C seems like a nice guy, and he has tried to fix things by helping me find some resolution by seeing me a few more times to resolve some issues, something I’m really grateful for him doing, but it has left me frustrated… not at him, but at “the system”.
Dr C is at least in his 60s and has been practicing a long time and while experience can be a good thing, in the last 40+ years he has been practicing, there have been many advances made in mental health and after seeing him (today and the last two times I’ve seen him) as well as dealing with other similar aged, Australian trained, male psychiatrists both professionally and personally, there are some beliefs that many of these older psychs hang onto that were disproven long before I first began my training in psychology in 1998.
Part of it I think is the difference between training for psychologists versus training for psychiatrists. One of the mistakes Dr C made was not realising my depression was heavily biological and therefore pushing psychotherapy and ignoring my GPs repeated requests to add an antidepressant to the medication I was already taking (seroquel, an antipsychotic used to treat bipolar depression and to prevent mania). Being trained as a psychologist myself, we are taught that depression (and bipolar episodes) are caused by both biology and environment. That for some people, the biological component is bigger than others and therefore the environmental trigger needed is less, but that there is no such thing as pure biological or pure reactive depression. We were also taught the same in my neuroscience classes in my science degree as well. Whereas older psychiatrists were taught the belief that there are two types of depression “major depression” which is entirely biological, and reactive depression and that you fix “major depression” with medications, and “reactive depression” with psychotherapy.
Dr C has since realised from how I responded so well to changing medications that my depression was more biological than reactive, but I just feel like if I hadn’t changed to seeing Dr A, I’d have never got help and I’d probably be dead by now. As I said, I don’t blame Dr C, I blame the system that taught him.
So where does aspergers come into it? Well that’s complicated.
The underlying reason things went wrong with Dr C was him misunderstanding what was wrong with me and it goes a lot deeper than just the biological versus reactive depression thing. I feel sorry for some psychiatrists who I’ve seen – I confuse the hell out of them. One of the things Dr C said today is I have a very complicated presentation which is very true. That I don’t present like a typical depressed person – which is also true. But if one looks at what I do have (Aspergers, bipolar and PTSD), how I present actually is completely logical but for it to be picked up, it needs a professional to have a really good understanding of how aspergers and/or PTSD interplay with bipolar and so far I’ve only met a handful of professionals who do have a good understanding of the combination.
I used to think people like me were rare, but as I join more and more groups for women with aspergers, I find more women like m. ‘ve now met quite a number of women with aspergers, bipolar and PTSD combined, with most are much older than me and didn’t get their correct diagnoses until they were in their 40s or 50s or even older. Sadly I think there are a lot more women out there like me, but they are floating around in a mental health system that misdiagnoses them so many don’t get help until they are older and some never get help at all.
One of the things I’ve talked about before is how my aspergers means I don’t always convey the “right” body language when talking. Most professionals don’t realise I have aspergers until I tell them I’ve been diagnosed (and even then I was only diagnosed a few months ago) because of their preconceived notions of what aspergers is and what aspergers isn’t. There is this gigantic myth out there, even amongst most mental health professionals, that 1. girls don’t have aspergers and 2. that people with aspergers are unempathetic.
Because of the myth that girls don’t have aspergers and that people with aspergers don’t have empathy, when most professionals meet a woman who is empathetic and highly sensitive and who is struggling with their mental health, they see the atypical body language and tone of voice and sadly jump to silly conclusions like borderline personality disorder. It’s why so many women with aspergers have been through the misdiagnosis of BPD – because psychiatrists pick up that these women are “different” and have a long standing issue but because these women are highly sensitive, they jump to “personality disorder” instead of “developmental disorder”.
I wish that more mental health professionals could be educated that aspergers is not a disorder of lack of empathy, but rather often is a disorder of too much empathy, so much empathy that the individual is overwhelmed and either melts down or shuts down.
The reason this came up for me today was a comment Dr C made about being a highly sensitive person. The topic of diagnosis came up today obviously, and he could see that I do have major depression (and without having seen me manic himself, agrees probably bipolar – not that I need his agreement as I’ve been diagnosed by many people with it), and he agreed that saying I have borderline personality disorder was a mistake, but according to him, I still have traits.
Not that I’ve ever argued about having some traits – ultimately just about every human being has some traits of it because it’s ultimately just an extreme version of normal negative human behaviour. I have self harmed in the past and when depressed, I get thoughts of self harm and suicide (I did find it reassuring that Dr C acknowledged without me raising the issue that he now sees I only have those thoughts when depressed so could fall into just being a symptom of my depression). For those who don’t have a mental health background, a symptom only counts as a trait of a personality disorder if it can’t be better explained by another disorder ie, I only get thoughts of self harm and suicide when depressed, so they don’t count towards being a personality trait. I should also add, a personality trait is something that is stable over time, something that happens episodically also doesn’t count as being a personality trait.
And one trait he didn’t raise was my dissociation but my dissociation is only episodic and part of my PTSD so again doesn’t count as a “personality trait”. But what surprised me was his response when I asked what traits he thinks I do have. He gave two answers – the self harm/suicidal thoughts answer I just talked about and the second trait he said was “being a highly sensitive person”.
I was stunned because being highly sensitive (as in caring very much about what others think and feel) person has never been a listed symptom in any description of BPD that I’ve ever come across. Being very emotionally reactive to other people is a symptom, but being highly caring isn’t. It’s not the first time I’ve been described as a highly sensitive person. Even my own mothers likes to go around telling people that a big “flaw” I have is that I care too much about other people. She went out of her way to tell the psychologist who did my assessment for aspergers that it was a big “flaw” of mine. The first mental health case manager I ever had also liked to regular put me down by telling me I was too sensitive and also tried to insist that being “too sensitive” somehow meant a personality disorder.I personally don’t believe there is such a thing as being “too” sensitive or “too” caring. I believe we just happen to live in a harsh world where being highly sensitive and caring deeply is unappreciated. There are certainly negatives to being highly sensitive. It tends to attract people who use and abuse the highly sensitive person. You get taken advantage of a lot when you care deeply. It can also mean that you get abused a lot because abusers know you won’t usually fight back. But honestly, if someone said to me I could go back and time and choose not to be highly sensitive and not go through all the abuse I’ve been through in life, I would say no. Being highly sensitive is a gift. Yes it can also mean getting hurt a lot, but it’s a gift I wouldn’t gift up even if it meant getting hurt less.I think many people with aspergers, especially women, have been given this gift of being highly sensitive. Most people in society don’t realise it for two reasons. While I see having aspergers as a blessing not a curse, unfortunately it has it’s downsides and one of those is not always being able to act as what society deems “socially appropriate”. Not knowing what to do socially (whether to give a crying person a hug or to back off and give them space) or thinking we’re doing the right thing socially when we’re really not (something I do a lot, always ending up saying the wrong thing), means a lot of people in society end up thinking people with aspergers don’t care about other people because of how often we get things wrong socially. And the second reason is that many people with aspergers have been so hurt by being highly sensitive, they develop a trauma response of permanently shutting down their emotions. It’s not that they don’t care, it’s that they bury their emotions until they no longer know how to show their emotions.Ultimately that’s why I’ve confused so many professionals – because I am both highly sensitive, but at the same time I bury most of my emotions, especially my depression. Throw in PTSD from abuse I’ve been through in the past and I do understand why I confused so many professionals in the past. I mean, I don’t know how some of them have jumped to the conclusions they did reach, but I can see why so many put me in the too hard basket and don’t know what to do.I have ended up writing a lot more on this topic than I intended, I hope it’s not too confusing as I’ve jumped around a little. Ultimately I just want people to understand what it’s like for women with aspergers – that we are highly sensitive. That just because we struggle to understand the unwritten social rules of society and we don’t always know how to show we care, that we do care and very deeply. I want to destroy the myth that people with aspergers don’t have empathy. And I want to destroy the myth that being highly empathetic is a trait of a “personality disorder”.I know that these myths might linger for years to come, but if more people speak up about the myths versus the realities of what people with aspergers really think and feel, eventually we’ll get through to society. I want Sammie to grow up in a world where people truly understand aspergers and where she doesn’t have to go through the same misunderstandings, misdiagnoses and mistreatments so many of the women of my generation and previous generations have gone through.