wandering the next steps after misdiagnosis and feeling unsafe in healthcare settings

@EternalFlower I don’t know what to say. NDIS does NOT do everything.

Trust your instincts.

Get what is best for you.

big hugs

Hello @EternalFlower,

Thank you so much for sharing this with us, I can't imagine how hard this has been for you...not feeling supported, being constantly redirected, and not feeling secure in your care network are more than understandable reasons for feeling how you are.

Despite this, I am glad to know your GP and NDIS worker are helpful. Can you tell me more about how they have supported you?

I really hope our community can be a consistent and stable place of peer support for you. We're always here if you need to talk, okay? 💛

thanks @Glisten

thank u for caring x

@EternalFlower Hi I was also misdiagnosed with BPD when those symptoms were actually because of autism that was ignored and I actually don’t fit the criteria for BPD at all but no one would listen to me except my psychologist anyway I ended up moving states and things have been better with my care team and no one here thinks I have BPD so that is good. I am sorry you have had to go through this I hope things start to get better for you soon.

Hi @Eden1919 @AuntGlow @Glisten @Former-Member @Appleblossom

I have been attempting to question and challenge the public hopsital of where I have got the diagnosis of bpd

The psychiatrist at both spectrum and my consultant in case management said I have a fiff diagnosis

Still, bpd isall over my file

Im pleased to hear @Eden1919 that u got better care interestate

My previous public hopsital was better but I moved house and lost them.

@EternalFlower Hi I am not sure I am familiar with a “fiff” diagnosis so I am not sure what that means but as for BPD it is actually quite often misdiagnosed in women or AFAB people basically because of sexism the only criteria I fit was that I self harmed and that was enough for them to slap the label on me without doing any investigation as to what was causing my issues I really don’t think public hospitals are the best place to get diagnosed they often are short on time to see patients and aren’t very good at investigating root causes because they only look at acute issues. I am not sure how to get it completely off your record but hopefully the hospital starts listening to your chosen treatment team.

I too, have long term trauma from health services and how that intersects with mental health services. @EternalFlower For me, it has mostly been about witnessing what was done, or not to family members, and only part of my own particular health and mental health.

I have done enuff gratitude for the services, and still appreciate GOOD WORK, as you do too.

However, damage done can require a response in some of us, to be whistle blowers, which is partly how I see myself now. I will always praise and appreciate people who are doing the right thing, to their face and generally, BUT!

The but, is too big. Understatement! I won’t labour my full story here.

For your self, seek out pathways that nourish YOU. It makes sense to distance yourself from the BPD diagnosis. Yes, stigma from that label is abhorrent and destructive. Mainly it shows how the crisis management systems are not effective in the mental health sector. Yes, often making things worse for those, so dubbed. Most of the DSM is BS, but given biblical status, quite at odds with the SCIENTIFIC METHOD.

I am glad you have one decent worker.🦄 They shouldn’t be as rare as unicorns.

The NDIS is a very mixed bag. Yes, a lot of odd people are on the bandwagon. So long as they are doing their job, they can be unique critters like we all are. If their inadequate work on their own issues interferes with their ability to deliver the service they are paid for, that needs to be addressed. Individually and generally; individually, participants should be able to CHOOSE, and not judged if they let go providers. I still need to vent occasionally about the problematic so called providers, who damaged me or my son, and wasted our time and taxpayer funds. I am now using it as a learning experience, to become more proactively assertive.

Regarding getting satisfaction from hospitals about the BPD diagnosis, I am not sure of your chances. I wish you well with it. I don’t want to tell you what to do, but for us, we are forced to just cop the damage, which includes psychological, reputational, and loss of a $6000 computer, which may well be gracing some unethical staff members home. Hmmm. My trust is zero, now.

Take care, and focus mainly on your wellbeing.

@Eden1919 @AuntGlow @Glisten

Hey @Eden1919 sorry typo...meant diff diagnosis

My diagnosis is complex trauma and im a woman who is articulate so i got bpd coz why else would I be feeling the way I was ? Bpd actually has a diagnostic criteria, which spectrum conformed i didn't have in writing

It has been very unacceptable for people to assume I have bpd because of shallow facts about me

Hi @Appleblossom i will probably get let down

I just hoped that facts could matter

I sent them about 8 sets of diagnostic facts and tests from diff clinics and drs including public who said I have complex trauma and one from Spectrum stating I don't meet the diagnostic criteria of bpd.

Nb to all mental health workers

Please never assume anything about someone.

@Eden1919 self harm doesn't mean u have bpd and that's so disappointing

Correct and accurate treatment is impossible when people take shortcuts and im ready for bpd diagnoses to be done sensitively and thoroughly

I do not feel good when people assume I have bpd without asking me

I'm not familiar post with Spectrum? You mention the NDIS, so it seems you do have a permanent and severe disability - is that for psychiatric illness or something unrelated? Do you have a support coordinator? The right person is gold, but I know, they're a needle in a haystack. I'd focus on making the NDIS work for you, funding is flexible provided it isn't a stated a support and provided you have broad goals and can argue that what you are doing meets that goal, there are fantastic workers out there. I prefer independent workers - but I think you've found someone good?

I'd encourage you to look for a psychiatrist with a psychotherapy subspecialty and develop an ongoing relationship/therapy with them, whatever is going on with you. There are good people out there. But I know it can be very hard to find them, and expect to have to pay the safety net in out of pocket expenses.

(If you have capacity building funding that isn't stated you can use that towards psychology (NDIS) with an appropriate goal. )

You don't give much idea what's going on with you. So it's hard to know where to start with ideas.

I had a bpd misdiagnosis and am now so far beyond it it's irrelevant. I got well; well from my correctly diagnosed psychiatric illness; and the fact that there's a bpd misdiagnosis in my past is irrelevant. It's almost 15 years since I've seen anyone except my private psychiatrist for psych reasons, and if anyone ever brought up the bpd diagnosis I'd tell them to talk to my psychiatrist and get back to me afterwards. My misdiagnosis came from a Professor of Psychiatry too, but I'm so far beyond it and you can be too - if it truly is a misdiagnosis.

All the best.