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Mis diagnosed with bipolar affective disorder

Alice-nice-Alice

My autism spectrum condition diagnosis in early January of this year has shed bright light into every area of my life and one particular area of huge importance is my interactions with nhs psychiatric services. To cut a long story short …

I was diagnosed with bipolar affective disorder in 1999, then treated with mind destroying meds which had massive negative implications for my physical health too for over twenty years. Well it is now absolutely clear to me that the bipolar diagnosis was wrong, the symptoms they identified as mixed episodes in particular and which played a significant part in their diagnostic process I now understand were autistic meltdowns and even allowing for subjective interpretations of my behaviour in those times clearly weren’t in line the DSM5 criteria in terms of episode lengths. 

I have initiated the process of challenging and then hopefully having removed the bipolar diagnosis with my psychiatric team though it’s very early days, I’ll update this thread as things progress one way or another as I’m certain I’m not the only person this has happened too. One member of my psych team has said off the record that they are concerned I might try to sue for medical negligence, it’s unlikely but I’m not entirely ruling it out yet  

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  • It is a huge and growing problem and I'm sorry to hear how badly you have been impacted.

    Far too often people share stories on here and elsewhere of their previous misdiagnoses. How many more have been affected. Many will feel unable to speak out. Many more could still be unaware. How many will have taken their own lives needlessly, while never learning the truth about who they are.

    Autistic females are often misdiagnosed with personality disorders. My mum was before I was born, yet medics never told her. She found out years later, after requesting her medical records for something else. By then they could not even tell her what type of personality disorder she supposedly has, only that it can never be removed from her medical records. It would certainly explain a lot about how she has been treated over the years and constantly disbelieved.

    Then there has been the unquantified negative impact on me, from the meds she was on all the way through her pregnancy and most of my childhood. Those meds, as in your case, having massive negative implications for her physical health too. As a result I've been very wary about taking meds for my anxiety. On the occasions I was bullied by my GP into taking antidepressants the results were almost catastrophically negative and traumatic.

    It is interesting that they fear being sued for medical negligence. It is certainly my experience that services are more interested in closing ranks and covering their own backs than helping someone in distress. I wonder if this kind of issue will be the next thing to come to the attention of the ambulance chasing lawyers.

    Please do let us know how you get on. If you do not already have an advocate, who can support you in the process, that is worth looking into.

  • in reply to Autonomistic

    I am female btw, plus in 2021/22 they were also trying to pin EUPD(BPD) on me ! They didn’t complete that process thankfully 

  • in reply to Alice-nice-Alice

    It was a perfectly understandable reaction you had and nothing you should feel responsible for. After all they were supposed to be the experts diagnosing and treating you.

    Sounds like you had a lucky escape more recently. Imagine trying to have two wrongful diagnoses retracted. Having that happen within the past couple of years makes it even more apparent how little understanding there is of autism within mental health services.

    Sometimes I think it would be better if they were to rip up the DSM5 and start again. Starting again on the basis that neurodiversity exists and there is no 'normal' to deviate from.

  • in reply to Autonomistic

    Thanks so much for your support here too. I agree completely with what you say, DSM5 is fundamentally flawed and perpetuates prejudice against the ND community. Regards the borderline, a psychiatrist ran a fairly brief test on me and identified eight of the nine traits, but I now understand that all of these are a consequence of my ASC. Fortunately it needed confirmation by a psychologist and due to their administrative ineptitude this hadn’t happened by the time of the ASC diagnosis. I have made it absolutely clear to them that they will not be pursuing this further. 

    I owe a huge debt of thanks to my autism assessor in Merseycare, she was unbelievably thorough and kind and validating, the result of course positively and she remains available to support me. I can’t name her here but her input has been life changing. Thank you, you know who you are … “and she collects bricks!”  

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  • in reply to Autonomistic

    Thanks so much for your support here too. I agree completely with what you say, DSM5 is fundamentally flawed and perpetuates prejudice against the ND community. Regards the borderline, a psychiatrist ran a fairly brief test on me and identified eight of the nine traits, but I now understand that all of these are a consequence of my ASC. Fortunately it needed confirmation by a psychologist and due to their administrative ineptitude this hadn’t happened by the time of the ASC diagnosis. I have made it absolutely clear to them that they will not be pursuing this further. 

    I owe a huge debt of thanks to my autism assessor in Merseycare, she was unbelievably thorough and kind and validating, the result of course positively and she remains available to support me. I can’t name her here but her input has been life changing. Thank you, you know who you are … “and she collects bricks!”  

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