Psychologists, psychiatrists, misdiagnoses and understanding.

Well it’s been a long day.  I worked a morning shift today after an evening shift last night so very tired.  But I wanted to write before heading to bed.

So I was writing about the meeting with my case manager on Thursday, two days ago.  I probably should have started with my appointment with my psychiatrist on Tuesday.  I decided to ask my psychiatrist a big question that has been on my mind for years. In the last 13 years I have seen literally dozens of psychiatrists, psychiatric registrars, psychologists and more. I’ve had dozens of diagnoses, most of them being misdiagnoses.  At best, this has led to incorrect treatments, mostly it has led to no treatment, and sometimes it has led to mistreatment and outright abuse.

I’ve been seeing my private psychiatrist since March and began regularly seeing her after my second appointment in May this year.  When I was admitted to hospital in late May for 18 days and saw her quite a number of times while in hospital and been seeing her regularly since.  For the first time in my life, I feel like I’ve met a psychiatrist who actually genuinely understands me.  I trust her – which is big thing for me.  Because of the abuse I’ve been through personally and the abuse I’ve witnessed of others, I don’t trust mental health professionals, especially psychiatrists.

The big question I wanted to ask her was what about me has led to so many other psychiatrists not seeing the real me, putting incorrect labels on me and pushing incorrect treatments.  Even the better ones, ones who mean well, most have not seen the real me.  So what is it about me… what am I doing wrong that has led to so much misunderstanding?  Is it me at all?

The answer was pretty much, yes, yes it me but it’s not my fault.  I will explain.  Basically we talked about how children grow up acting is influenced by what gets their parents’ attention.  For some children, this means acting out as it’s the only way to get attention, for some children they grow up “normal” because their parents give them love and attention naturally, and for other children, for children like me, we got love and attention from our parents by burying our feelings – by hiding any pain and sadness, by pretending we were fine even when we hurt inside terribly, by never showing even the hint that anything was wrong inside.  So much so that even natural body language and tone of voice suppress any trace of pain.

So this has left me as an adult rarely able to ask for help.  Basically being unable to ask for help until things are incredibly bad and when it comes to depression, being unable to ask for help until severely depressed, and barely able to contain the urge to hurt or kill myself.  Because of my natural instinct to protect myself by unconsciously hiding my pain, even when I try to tell people I’m severely depressed, my body language and voice apparently convey that I’m ok.  My psychiatrist (Dr A) has taken me seriously, and several others I’ve seen short term along the way have, but most have just ignored my words and judged me on my body language, thought I’ve been fine.  Because they thought I’m fine, they didn’t believe my words and dismissed me as just exaggerating or outright lying for attention.  No matter how many times I showed I was always truthful and not exaggerating about anything, I was still dismissed as exaggerating or lying.

This has meant when I asked for help I either was told I was fine and didn’t need help (and so got no help at all) or treated like a bad person and abused.  In turn this has led me to finding it even harder to reach out for help, so when I finally did reach out, I was even more unwell, which in turn led to a greater mismatch between my words and my body language and even more misunderstood and treated worse, leading to me finding it even harder to reach out and round and round.

I had never thought of it that way before but it made sense to me and think it explains a lot.

One thing we didn’t talk about that I think also comes into it is having aspergers.  Having aspergers means having social difficulties.  One of these difficulties many of us have is trouble reading the emotions of others and trouble conveying our emotions to others.  Even if I had had the perfect childhood, I believe other people would still have trouble fully reading how I truly feel.  The abuse from my parents when I was child just stamped out any possibility of most people understanding me at all.

But in saying that, I’ve always been disappointed by mental health professionals not understanding.  My belief is they are professionals – most people who struggle with mental health issues have suffered traumas, and (depending on who you ask) about 1% of the population has some form of autistic spectrum disorder (including aspergers), and people with high functioning ASD/aspergers are more likely than the average person to suffer abuse, depression and anxiety – so as professionals, they should be able to recognise trauma reactions and social communication difficulties.

But at least Dr A has been able to recognise my trauma reaction and communication difficulties and takes me seriously.  It was really reassuring after a while since my previous appointment to be able to just ring up and say “I’m not ok, can I see Dr A” and to get in and be taken seriously and to treated (in this case with an increase of my antidepressant).

Which of course brings me back to my case manager, T.  I’d been wanting to ask T for a while what he thought my diagnoses were – did he agree with Dr A or did he think something different.  I had been too scared to ask before because misdiagnoses can be hurtful. I explained to him how I was worried about being given the wrong treatments and not being taken seriously, particularly when it was the service he works for (community mental health) that hadn’t taken me seriously when I reached out for help a year ago and said I was fine (despite the fact I was severely depressed and suicidal) and decided not to offer me any assistance at all.

After talking to him about what Dr A said, and talking to him about diagnoses, I felt like he actually understood it – that it made sense to him that just because I physically act like I’m fine, that psychologically I can be as severely depressed as is humanly possible.  I felt like I took a big step forward with him because I don’t trust male mental health professionals at all.  I’d requested a female case manager and had begged to change when I found out I’d been assigned a male.  But I agreed to one appointment with him, then agreed to one more, then agreed to keep seeing him and I’m glad I did.  I was left feeling like if I do get severely depressed again, I can ring up and tell him and be taken seriously – not be told I’m ok, or just a little unwell or that I’m exaggerating how bad things are – that I will be listened to about the severity of my depression and will get help.

For the time in 17 years (since the very first time I ever saw a mental health professional), I finally feel like I have a network of people I can reach out to if I become unwell.

Of course, since I’m doing okay at the moment, T has said we’ll only have one more appointment before wrapping things up and closing my file.  Which is okay with me.  Having worked in the system, I know how very hard it is to get a case manager where I live and they only have enough for seriously unwell people and I’m not seriously unwell anymore.  I know how hard it is to get help, and I wouldn’t want anyone to miss out on getting help when they’re seriously unwell so I can have a case manager when I’m doing fine.  But what really reassures me is he’s going to write in my file to basically take me seriously if I recontact the service in the future.  And (assuming he still works there as I hope it will be years before when/if I have another episode of depression) I can always ask for him so don’t have to go through the struggle of having to explain things to yet another person.  But it’s reassuring to know if I do have to, that there will be notes on my file that hopefully say I’m not exaggerating, that I actually hide how bad I really feel.

I know some people feel scared when they end seeing any sort of therapist, but I feel like a great weight has been lifted from me.  Even though I only have one last appointment with T, and my next appointment with Dr A isn’t for nearly 3 months (and if things are good I’ll probably only see her 3 monthly or less), I feel good. I feel really reassured.  I know help is only a phone call away if things get really bad again because for the first time ever, I believe people are listening and taking me seriously.

I will wrap up this post because it’s got really long – I haven’t even shared about my second psychologist appointment on thursday but it’s on entirely different topic so I’ll leave that for another post.  I really should get some sleep – I’ve been up since 5:45am and it’s now 1:05am.  Can’t sleep in tomorrow as we have a special church service in the morning.  We are having a dedication for Rose (the reason for my family and my mother in law visiting).  For those who don’t know, a dedication is much like an infant baptism.  But John and I don’t believe in infant baptism so we’re going with a dedication.  The difference? To us, baptism is for those making a conscious choice to be a believer.  Not something a young baby can do.  We’d much rather a dedication which is when parents commit to raising their child with a Godly influence.  Something we do believe in.

It also happens to be the first day of daylight savings so we’ll lose an hour which means an hour’s less sleep.  Maybe with a little luck my kind mother in law may babysit tomorrow afternoon and let John and I catch up on some sleep.

Anyway, time for me to sleep….

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