Misdiagnosis

How do you 'get over' a misdiagnosis? They said I have Borderline Personality Disorder over 10 years ago. I got autism diagnosis privately about 9 years ago. I havent had anything to do with mh services since my autism diagnosis. These past 12 months have been hard. I've been referred to cmht. I've had the assessment. They have put personality disorder as my diagnosis. 

I'm absolutely distraught. It will never leave me and it influences how I am treated by health professionals , both mental and physical health professionals. I don't meet the criteria now and I don't believe I did then. 

Anyone been through similar and got through it? I don't think I need any 'help'from mh services as it seems nothing has changed in nearly 20 years. I'm considering private therapy if I can afford it.

  • Thank you for your reply. I only wanted the medication but I think I could manage without and I would rather not have it then deal with mh services.

  • Hon, I am so, so sorry this happened to you. It’s terrible, nobody deserves it. And while private practice may seem like a better answer, it also isn’t a perfect solution. I spent 12 years with a private childhood psychiatrist, during which I endured constant gaslighting, attempts to alienate me from my family, and multiple misdiagnoses that resulted in over a decade of improper medication administration. You are absolutely not alone. 
    the most important thing is to use whatever power of medical choice you have available to get a doctor that’s right for you. Don’t just go with the one that seems right—go with the one that understands you best, has the best background, understands your identity and perspective, and how your experiences are shaped by your life. I know this isn’t always a feasible solution, but it’s the best chance you’ve got. Advocate for yourself, and use any and all support systems you have. Recruit different members of your medical team—if you have a good, GP, sometimes that can make a world of difference. Remember, you may be a statistic or a particularly interesting money bank in the eyes of a bad doctor, but you deserve a doctor that sees you as you are—a whole human being that deserves to thrive.

    i hope things take a turn for the better. keep reaching out for support—we’re here for you.

  • Thank you for all the information. I don't have the energy to go through pals at the moment. I will look into it when I have the energy.

    Also I don't want to do any therapy through the nhs , especially if they can see my notes and irlf they aren't autism specific. I have someone who helps me with daily living things from an autism charity and we did an autism passport and emailed it to my gp. I don't know how it works with the computer system and what they see on their screen.

    Thank you. I will look for the book.

  • Thank you. Yes it is very frustrating and an ongoing barrier.

    I can't seem them saying it's a misdiagnosis  but I will raise it with them, thank you 

  • To be fair, they likely wouldn't have removed the BPD diagnosis from your record unless a specialist confirmed it was a misdiagnosis and this was added to your NHS record. If they did confirm it was a misdiagnosis, then I imagine you could just tell the service you're under now and ask them to find it in your medical record.

    However, if a misdiagnosis wasn't confirmed by a specialist, you could raise this with your current provider to get it looked into. 

    I'm sorry it must be frustrating! 

  • Hi and welcome to the community.

    I'm sorry that you're feeling so upset.

    As you disagree with the conclusion of your recent assessment, I'd suggest contacting PALS for advice. This link provides information about how they could help you, including in respect of making a complaint, if you wish to:

    NHS - What is PALS (Patient Advice and Liaison Service)?

    Regarding therapy, you may be able to access NHS therapy services via self-referral, without needing to go through your GP or a mental health team. In England, for example, you can access therapy for anxiety and depression related to various health conditions via the instructions here:

    NHS - Talking Therapies

    Whichever route you choose to follow for therapy, you might first find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful:

    The Autistic Survival Guide to Therapy

    Finally, in respect of your autism diagnosis, you might like to follow the advice here to request a support plan (perhaps from your GP, in the first instance). This NAS resource includes advice, along with a template letter that you could use for this purpose:

    NAS - Formal support following an autism diagnosis > What can I do if support is not provided?