Lived Experience Forum

[NikNik]

Hi everyone,

SANE Australia has just recently launched it's updated Factsheet and Guide on BPD. 

Both pieces of content have been reviewed by people with lived experience and clinicians. A big thanks to those in this community who gave their valuable feedback! 

You can find the new content here

We also have the wonderful Steph, who shared her experience in this video

As it's BPD awareness week, I'd like to hear from our members (you!) about how you explain to your loved ones BPD and how they have responded (great and not so great). Any learnings or tips would be appreciated!

[BlueBay]

Hi @NikNik

I still struggle with this myself.  I was first diagnosed in my late forties. I had no idea how to tell my husband and children.  I had to get my head around it myself first.  Along with BPD diagnosis I was also diagnosed with clinical depression, anxiety and ptsd from childhood abuse.

I tried many times to explain to my husband what BPD is.  It was explained to me by a therapist that when emotions are high for BPD sufferers their emotions stay high a lot longer than a person without BPD.  So if there is a baseline for emotions a non-BPD sufferer would drop quickly back to the baseline; whereas a BPD sufferer emotion's stay well above the baseline and takes a lot longer for the emotion to come back down (does that make sense).

I actually printed out some information from Sane the other day and gave it to my husband and asked him if he would like to read the information as it was part of a survey.  He read it and said it was easy to understand.  So I am hoping that he has some knowledge of what BPD is and how he can help.

I haven't told many people outside of my husband and children.  I still feel ashamed, embarrassed about the words 'Borderline Personality Disorder'.  To me I would like it changed to 'Emotional Regulation Disorder'.  So I tend to shy away from telling friends and I have just recently told people, if asked how I am, that I have depression and anxiety.

I remember last year while in hospital (mental health unit) I asked my psychiatrist if I could have a joint session with my husband.  He agreed and I then was able to explain a bit more about my BPD behaviour and have my psychiatrist help out and explain to my husband.

Sometimes I feel like giving information to certain friends when they say 'just get over it' or 'move on'.  They have no understanding of how difficult this illness is.  If it was so easy to 'just get over it' I am sure all BPD sufferers would have.

Tips: Print out information and give to your loved ones to read. Also having the support from a professional in a session where you can explain BPD and then have the backup of your therapist.

I found the information on here fantastic.  It's a long hard road to recovery and I only hope that everyone who suffers BPD gets the recovery they deserve; the love they need and the support from their family and friends.

Also joining a forum like this one has been beneficial to me personally. Just been able to chat to others brings hope and knowing I am not alone.

[NikNik]

They are great tips @BlueBay
Thank you 🙂

[Nik94]

@BlueBay reading your post made me feel really confident about finding a bases for help.

I was diagnosed with BPD almost 2 years ago now, when I was 20. I hate talking about it or even thinking about it, I am so embarrassed about it. I've driven away an incredible partner and my entire family because I couldn't explain why I was just horrible, why I could not control my emotions and only recently I have started to mend my relationships with my family. But for a long time I tortured them with my disgusting behaviour and we all didn't know what was going on. My family just said I was a shit person and nothing was wrong with me and my partner just left cause he knew I was dangerous for him and his daughter. Being describe that way kills me inside right up to now, for along long time I just wished I wasn't breathing.

I've had therapy, lots and lots of therapy to help me behave 'normally' and to gain better control of my emotions and to help with my suicidal thoughts. Sane Australia has helped me understand those things in more depth and reading about people experiencing the same struggles has encouraged me to fight this!

[BlueBay]

Hi @Nik94
I'm so happy that I have helped you gain some insight into what BPD is
Are you still having therapy?
Yes I agree Sane forum and the information they have on here is fantastic. Easy to understand.
Your not a 'shit person' as your family say. You struggle with your emotions and behaviour. But with the right psychologist you can get help. Have you heard of DBT? It is designed for BPD sufferers.
Happy to chat again with you.
Take care you are not alone.

[Louise11]

I didn't want to tell my family about my mental illness. I didn't want to tell my friends about my mental illness. I didn't want to tell myself I my mental illness. I didn't want to admit that I had something 'wrong' with me.

It has been almost a year since I was diagnosed with BPD. When my psychiatrist first diagnosed me, I wasn't even told about it. I lived in supported accommodation and my workers were made aware months before I was; it wasn't until I came across a hospital discharge summary that I even knew I had BPD. 

Prior to being diagnosed with BPD I already had C-PTSD, severe depression and anxiety as my list of diagnosed conditions. So I immediately thought 'Why not add something new to my list of things that are wrong with me?' even though I didn't have a clue of what BPD was.

So of course, I researched what it was. My goodness, it scared me. It made me feel crazy. I spent months in and out of hospital psychiatric units whilst I was not medicated and didn't even know what was going on in my body. Once I became medicated I began to calm a little, but I would still get me bad days, even weeks. 

When I told my family they gave me a variety of different responses, initially they weren't completely aware of what BPD was and after I gave them many fact sheets from multiple different sources they understood. My mother was very supportive as were my eldest two siblings, but two of my siblings were not so understanding. One told me to "stop making things up and get over it" and the other said things much nastier. 

Telling my current partner and explaining it to him was far easier. Occasionally we still have moments where I think he doesn't get it- but he is trying and that's all that matters to me. 

I found that having strong support systems, very understanding people and the knowledge that it takes time to heal were and currently is my greatest weapon in this battle of mental illness. Those and my friend the Internet, where I get to talk to many with the same diagnoses as me. 

[Former-Member]

I have realised this thread and recent discussions about BPD have been helpful for me in that my family know but we've never really discussed it. My mental health team gave my kids the SANE fact sheet three years ago when I was first diagnosed. We didn't discuss it after they had read it. My kids could just see that there was something wrong with their mum and it had a name. My mum took the fact sheet and discussed it with her GP. I have never really spoke to anyone or my friends about it. They know my diagnosis and some of my behaviours but we don't talk about it. I think perhaps it could be time to as it seems like there has been a big gap in this communication process which is talking about how it specifically affects me or them too. I tend to try and hide my stuff from my kids a bit, it's visual but not discussed. Maybe we all need to work this out better and have it more transparent to help each other better. 

[PeppiPatty]

Dear @Nik94
How are you ? I need to read all these messages And know some people here already like @BlueBay and @Former-Member ( hey you two)

I know people diagnosed with BPD one my Mum And I must feel I want to contribute to your story.

And that is : I feel : when people I know get this diagnosis don't work on themselves it really really shows.
When I read say : @BlueBay you can see how hard she works and it makes a huge difference to the observer..... I'm not here to judge I've got my own problems : my journey of accepting my own diagnosis hits me in my face daily.

I've had major frontal damage done from a car accident / anxiety/ PTSD / o have my own long journey.

Take care hope to see you around
Pp

[BlueBay]

Hi @PeppiPatty

how are you?

[PeppiPatty]

Thanks @BlueBay

Feeling okay......pretty knackered. REally busy today. Husband had a huge tantrum in the city I live at and people were smiling at him........I just got in the car and drove home. 

With him. 

Give him 5 minutes alone and he changed and begs apology. 

We are listening to Alices restruant by Arlo Gutherie......

My dog is named after him........

Can we talk soon, I'm going to bed....

PPxx