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Not sure how to move forward post diagnosis.

Ellie1984

I was diagnosed 6 weeks ago at the age of 41 after spending all of my adult life telling people how much I was struggling but feel I was largely not listened to. I feel angry with mental health professionals as I feel I was just labelled as anxious and then ignored. Either that or they decided what the issue was then ignored anything I said that didn't fit that idea after. I feel like my brain has tapped out of life now and it's a strange feeling. I am still working and get on with the bare minimum but beyond that I just don't feel like I care about anything any more. I just feel numb and like nothing brings me joy or interests me to care about it any more. How do I move forward from feeling anger and sadness at what my life could have been had I been heard and diagnosed sooner when I just don't care to try with anything any more? Sorry this isn't a more positive post.

Parents

  • Hi Ellie

    My story has several parallels to yours. I was mis diagnosed with bipolar in 1998, the “professionals” failing to note one of the basic features of hypomania and mania as described in both DSM5 and ICD, which was the required episode length. My meltdowns can resemble bad hypomania, but they don’t last longer than several hours after which Im burnt out, hypomania/mania episodes need a duration of weeks (without checking I cant be precise but its many times longer than my worst meltdowns).

    Then in 2022 a non clinical member of staff in a psychiatric hospital I was in at time ran a short screening for autism and I scored highly. She persuaded the psychiatrist on the ward to have me referred to the trust’s autism team. Who confirmed the correct diagnosis as Autistic Spectrum Condition.

    It then took two years of self advocacy to get it changed, begrudgingly on their part, from bipolar to autism  i was told off the record by one of the psychiatric nurses that they made it so difficult to get my records changed for fear of me suing the hospital trust  Actually beyond correct diagnosis all I wanted was an apology for their twenty years of abuse by psychotropic meds, unsurprisingly I did not get this  

    Knowing the correct condition has opened many doors, some however had monsters behind them especially as my memory recovered and subsequently I had C-PTSD added, for which getting appropriate psychological treatment has so proved impossible, both on NHS and privately  

    I very much relate to your lack of interest in things but it has definitely improved with time for me and continues to. It would pass the criteria for depression Im pretty sure but as I feel increasingly bright Im going down that clinical path  

    best wishes

    AnA

Reply

  • Hi Ellie

    My story has several parallels to yours. I was mis diagnosed with bipolar in 1998, the “professionals” failing to note one of the basic features of hypomania and mania as described in both DSM5 and ICD, which was the required episode length. My meltdowns can resemble bad hypomania, but they don’t last longer than several hours after which Im burnt out, hypomania/mania episodes need a duration of weeks (without checking I cant be precise but its many times longer than my worst meltdowns).

    Then in 2022 a non clinical member of staff in a psychiatric hospital I was in at time ran a short screening for autism and I scored highly. She persuaded the psychiatrist on the ward to have me referred to the trust’s autism team. Who confirmed the correct diagnosis as Autistic Spectrum Condition.

    It then took two years of self advocacy to get it changed, begrudgingly on their part, from bipolar to autism  i was told off the record by one of the psychiatric nurses that they made it so difficult to get my records changed for fear of me suing the hospital trust  Actually beyond correct diagnosis all I wanted was an apology for their twenty years of abuse by psychotropic meds, unsurprisingly I did not get this  

    Knowing the correct condition has opened many doors, some however had monsters behind them especially as my memory recovered and subsequently I had C-PTSD added, for which getting appropriate psychological treatment has so proved impossible, both on NHS and privately  

    I very much relate to your lack of interest in things but it has definitely improved with time for me and continues to. It would pass the criteria for depression Im pretty sure but as I feel increasingly bright Im going down that clinical path  

    best wishes

    AnA

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