Diagnosis and misdiagnosis – why you should trust your own instincts

It was 1999 in a psychiatrist’s office somewhere in the depths of Charing Cross Hospital, London.   I’d been sent to see him for a potential diagnosis of Attention Deficit Disorder (ADD). The psychiatrist seemed bored or irritated. I was not sure what. I couldn’t, and can’t, read people.

I fumbled awkwardly through the reasons why I thought I had ADD. I told him of how I liked to daydream, not being able to organise or keep things tidy, I told him about the terrible meltdowns I had and how my friendships and relationships seemed confusing.

I was there because I’d self-diagnosed. It had started with a breakdown. One day I’d suddenly found I could not go on any more. I couldn’t get out of bed, put on my face and put on my mask, go to work and act normal. I just could not do it any more. I was very low, defeated and confused.

I had a diagnosis of depression and I definitely was depressed, but I felt there was more so I went online to try and discover what.

This was where I’d come across  Attention Deficit Hyperactivity Disorder. I didn’t think it applied to me until I discovered that it was possible to have ADD without hyperactivity.  A lot of women with ADD have this version.

Here were stories of people like me who couldn’t keep their houses clean, who forgot birthdays and lost things, who lived amongst piles of  laundry, who messed up social situations, who were chaotic and impulsive.

I spent a lot of time reading and talking online on forums and email lists. I bought books like ‘I’m Not Stupid, Crazy or Lazy’.

I went to the doctor and, not without trepidation, told him I’d found the reason for my depression. He was sceptical and thought I was a crank. People getting information from the Internet was not a usual thing then and was regarded with suspicion.  I left disappointed with a prescription for Prozac.

I didn’t let it go. I kept asking my psychiatrist for a diagnosis. And kept being told “No”. I wasn’t assessed, just told they didn’t think I had it .

Eventually I  went for an assessment with a private specialist I could ill afford. He diagnosed me with ADD without hyperactivity and dyspraxia.

Now with a diagnosis, I continued reading and talking online.

I went to a group for adults with dyspraxia. I experienced being in a room with people who, like me, were clumsy, who struggled in groups, who zoned out and stared into space. I started to come across some people diagnosed with Asperger’s. I heard the word ‘neurodiversity’ for the first time and saw a Venn diagram showing the overlap between ADD, dyspraxia, autism and dyslexia.

But I needed treatment and couldn’t afford to pay for treatment privately, so I went back to the NHS. My private diagnosis at least got me sent for an assessment.

Which led me to the bored and/or irritated psychiatrist in  Charing Cross hospital.

He didn’t listen to me for long before he makes his pronouncement.

“You don’t have ADD” he said.  “You have a personality disorder.” Then he went on condescendingly “But don’t worry, you’ll grow out of it”.  I was pushing 30,  a bit old to be growing out of things.

And that was that.

*

I’m writing about this now, because on Sunday, I participated in an #autchat on Twitter about executive function. The sense of acceptance and not being alone I got from that was amazing. And talking about executive dysfunction (planning, organising, cooking, tidying) got me thinking having ADD as well as Asperger’s and about the diagnosis I received in 1999 and how it had been dismissed.

I am regretting that  I could have had this feeling of acceptance in 1999 and 2000, but instead, when I was given the personality disorder diagnosis, I stopped going down the route of exploring neurodiversity.

At the time, I desperately needed help, and had to get that help from the NHS.  Successive doctors read my notes and told me I had a personality disorder.

I had to believe them. I struggled with severe depression, self-harming and addictions.

I was told that issues like my stormy relationships, my propensity for making enemies and being bullied, my dislike of crowded places and lots of people, my inability to keep things tidy, my meltdowns, my sensitivities were considered to be maladaptive behaviours  or cognitive distortions caused by my personality disorder. After a while, I stopped trying to talk about these issues to people who didn’t take me seriously.

I was disappointed, frustrated and confused.

My intense interest in ADD and neurodiversity faded. I left the dyspraxia group. Instead I start researching and reading about Borderline Personality Disorder and trying to understand myself through that lens.

It would be 15 years before I’d consider the word ‘neurodiverse’ again in relation to myself. 15 years before another psychiatrist would diagnose me with Asperger’s and I’d go away and research it and read all the information that had been written about women and Asperger’s since 1999 and find myself again.

In those 15 years, I’d be in hospital 5 times in a year. I’d attempt suicide and be sectioned. I’d self-harm more. I’d stop self-harming and stop eating. I’d spend a year in bed unable to function.  I’d lose my job and my relationship. I’d move round the country in a vain attempt to make things better. My drinking would get better, then get much worse.  I’d have a lot of therapy. I’d try desperately to do well and understand myself.

Eventually I’d manage to pull myself out of the downward trajectory my life had taken but continued to feel confused, self-hating and blaming myself for not quite ever measuring up.  It wouldn’t be until my Asperger’s diagnosis that this would start to change. I’d start to understand myself at last. Books, website, blog posts, Twitter chats and people who understand would do more for me than therapy ever would.

And I feel some sadness about this because I could have had the self-knowledge I have now back then. After all those wasted years I am finally starting to accept myself in a way I never have before and to stop chasing after ‘normal’.

I feel angry with the professionals who back in 1999 and 2000, who never considered why I was asking for this diagnosis or thought about other related diagnoses like Asperger’s. I know that psychiatry can be an inexact science at times. I know there wasn’t the information back then about how autism manifests in women.

I don’t doubt that the professionals thought they were doing their best and my life may have gone awry anyway.  And not everything  they did was useless.

What upsets me is that they ignored my self-knowing. They may have trained for however many years but at the time I’d spent 30 years alive in my body living my life. And I knew there was something else.

And I’m annoyed with myself ignoring my self-knowing too. I had very low self-belief and I believed them over me.

This is why people who self-diagnose should be listened to. We know ourselves better than any professional who marks us against a list of criteria. Yes formal diagnosis is important, and personally I don’t trust my own judgement enough. However, people with a self-diagnosis shouldn’t be driven away or told they don’t belong. If you have a self-diagnosis, trust yourself, your instincts and your judgement.  I didn’t (even with a professional diagnosis) because most of the doctors I saw didn’t believe me and it resulted in wasted years.

And professionals, try and understand why that person believes they have that condition. Don’t think you know everything about everything. Don’t dismiss everyone with a personality disorder diagnosis as being attention seeking. Whatever our diagnosis, people don’t self-diagnose for fun.  It doesn’t mean we don’t know ourselves.

Because if you get it wrong, you could be condemning someone to a lifetime of confusion, misunderstanding and frustration. Or worse.

*

This story ends 15 years later in another psychiatrist’s office. We’re talking about my diagnosis of Asperger’s.  I tell him I’m disorganised and messy. My flat looks like it belongs to a teenage boy. “Aren’t autistic people meant to be neat and tidy?”, I ask, thinking of stereotypes.  “Usually” he says. Then he goes on casually, as if it is nothing. “You could have ADD as well.”

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4 thoughts on “Diagnosis and misdiagnosis – why you should trust your own instincts

  1. Oh wow. Thank you for sharing your story! Borderline Personality Disorder was mentioned offhandedly to me in 2002 or 2003 by my college therapist, without having done an evaluation. I didn’t pay it too much attention, thankfully, and avoided getting an official mis-dx of BPD, but still, just the mention of it set me off track for years too. I was already officially dx with Major Depression at the time, which was probably accurate although not the whole story.

    I’m glad you figured it out! Self-doubt is such a difficult thing. I discovered Aspergers/autism four years ago and just shelved it all eventually because I couldn’t afford to be evaluated at the time and got overwhelmed with it all. I wish I’d reached out to the Autistic community at that time and not waited for it to be “official” but I didn’t have the self-confidence necessary to do that.

    So good to have you here now 🙂 Definitely one of those better late than never things.

    • Thank you 🙂 I’m glad to be here and happy that I figured it out eventually because I’m finally getting to know myself. Glad you got here too. I hope as more professionals learn about autism and how it affects us, more people will get the right diagnosis earlier.

  2. Your post feels true and insightful to me too. I’ve recently been diagnosed with Aspergers and I’m in my mid 40s. Self harm, depression, and addictions are all familiar although I have have been able to keep them at bay. I agree that finding community has been a welcome change although I personally wish I had discovered myself and my peeps much earlier. The broken life and friendships behind me are the hardest to look back on without regret.

    Thanks for your post.

    • Thank you 🙂 And definitely ‘me too’ about wishing I could have discovered it earlier and regret about the past. Trying to be accepting but sometimes it’s hard.

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