Lived Experience Forum

[BlueBay]

@Shimmer

None of my treating team have ever sat me down and explained what BPD is.  I had to look on google to see what BPD meant. It scares me a great deal because I fear of not getting better.

No one has really explained how my situation is with BPD.  fear is a huge thing for me, the diangosis, the treatment and changing of behaviour and thinking patterns, it's scary.  in a way it's like i have to change my whole way of thinking and behaving and yes it's scary

[Former-Member]

Thanks Shimmer, great topic. 

For me, getting the right diagnosis has massively changed my life for the better. I had a series of wrong diagnoses before that - BPD, schitzoaffective, even bipolar many years ago - and I knew that none of them fitted but when you're being told something by professionals, you question your own insight. Some of the, I guess, secondary diagnoses like PTSD have stayed the same but knowing my correct primary diagnosis explains why some of the PTSD treatment I had, made me more unwell. Since I was diagnosed with DID, I've finally started getting therapy that fits for me, and also been able to understand and do things on my own that have helped me function better. 

[Shimmer]

Hi @Shaz51 

Your right, sometimes it does take years to come to a diagnosis, and misdiagnosis can certainly occur! It sounds like with your husband, he has received a lot of diagnoses over time, and that has gotten confusing about what is actually going on for him.

A couple of things come to my mind which may provide some insight into this process:

• If there is a few different diagnoses that could be relevant to a person, clinicians consider them and make decisions on which one (or more) best explains the symptoms the person is experiences - the others become "differential diagnoses" (this means a diagnosis that could have been relevant, but doesn't explain the symptoms as well as another diagnosis). People can also have "comorbid diagnoses" - which means more than one at the same time.
• Diagnoses can change over time - they are not necessary there forever! Symptoms may change or recover, which means that the person no longer meets criteria for the diagnosis. Clinicians tend to use diagnoses as a term to reflect their understanding of what is going on at the time, and this can change!

I wonder if these ideas are some you have heard before @Shaz51 and others, and whether they are helpful?

[BlueBay]

I have tried DBT but it is not easy to change.  I can't see an end to this.  All I can see is therapy, hospital, psychs and emotional stuff.

I sometimes wish i was never diagnosed.

[Samiam]

I am too ashamed to tell others about having a personality disorder, I dont think it is helpful for me or others to share that information due to the possibility of stigma and my self stigma - I have a big issue with imagining what others will think if I share that information.  I share about general anxiety and depression and social anxiety but only with like minded people or people with their own mental health issues.  I disclosed too much when I was younger with the view of being an advocate for mental health issues but it did not often have a positive result.  Now I am much more discerning about who I talk to and what I talk about.

[Shaz51]

Hi  @Shimmer

What got my Husband is that the specialist and the mental health told him "I DON`T KNOW WHAT YOU HAVE !!!

so my husband has cancelled all help

[leitor]

For me my wife's diagnosis has helped me gain some understanding on what has been going on, the possible outcomes I can expect, to try and find out how I can best handle things that come up, and get the most appropriate treatment.

For her, it has been so traumatic and confronting that each time she has immediately rejected it, blaming her psychiatrist, pharmacist etc with being responsible for her life, and running away.

Over time she calms down, things change in her mind, until it was me refusing to take my medication, not her. Me who needs to follow my psychiatrist's advice. And if I only do this, all will be ok again.

I am advised that until she gains insight, treatment will be difficult, but it is hard to see how that will happen. So the diagnosis is useful and helpful in some ways, but definitely harmful in others.

[Shimmer]

Welcome to the Forums @Samiam, thanks for sharing your experiences tonight.

So it sounds like receiving diagnoses made you feel "wrong" and "different", which led you to isolate yourself. I don't think you are alone in this!

I'm really curious to hear about how you changed your approach to your mental health, to feel less ashamed and more hopeful about coming out from under these labels?

[CherryBomb]

From what people have contributed so far, it seems like getting a diagnosis is very personal and different experience for individuals. For some, it's helpful to explain things and get the appropriate treatment, but for others it can lead to more confusion. @BlueBay mentioned, it's challenging when there's a lack of information and consultation with health professionals. 

One thing that stands out for me, is how different diagnoses are associated with different levels of stigma. As @Missellybee pointed out, people can find the diagnosis of 'psychosis' confusing. I like what @Missellybee said about  how while people can hold misconceptions of mental illness, it's also an opportunity to point out resources and educate them. 

[Former-Member]

Hi all, i'm trying to get kids ready for bed and so will come and go as i can.

Im finding the labels and diagnoses really hard and distracting from getting better/focussing on the areas that i need/want to get better in... because the whole label/s just make me feel as though im completely wrong/bad/broken.... but maybe its just because i've suddenly been diagnosed with different labels by two diff psychs for family court purposes all of which is just meant to be used against me, though my own treating team have tried to show in their reports that i am a capable mother, it really doesnt matter when words/diagnoses are just looked at on paper. also found out in the psych reports labels that my own psychiatrist hadnt even mentioned before which was hard.  

lj