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BertandErnie
New Contributor

Understanding lived experience of BPD

Hey all, 

A forum newbie - what a great crew you all seem! 
My 16 year old daughter was diagnosed with BPD in March this year. Since then, we have had 9 hospitalisations for suicidal ideation and self harm by starvation. Her illness is further manifested in verbal abuse, episodes of uncontrollable crying and what she experiences as panic attacks. She is in weekly therapy, but says nothing works. 
i'm hoping to understand from folks here, even people with BPD, a few things - I've struggled to find first hand accounts to help me understand my daughter's experience. I'm specifically keen to know 

a. Is there anything that I can do that will help her to believe that things can get better? 
b. What has helped others on this forum, either carers or people with this condition to get results from therapy and engage with it? 
c. What is the experience of losing control like? Is there a conflicted 'two wolves' feeling where one part knows that maybe what's being said may not be fully reasoned? Can this part be appealed to? 
d. What things should I avoid saying / doing? I know invalidation is key <I have read a number of books, watched YouTube videos, podcasts etc>, but I never seem to get it right! 
Thank you anyone who can help with this - this is a super tough journey, for my daughter likely more so than me but our whole family is really feeling it! 

4 REPLIES 4

Re: Understanding lived experience of BPD

Hey @BertandErnie, I noticed you and @Jaxta both start talking about Kids with BPD at the same time. 

 

No BPD is ever the same and I will try to tag some experts in that know a bit more than i.  @BPDSurvivor - Any thoughts.

 

The one thing I will say is that you will be the holder of their hope.  So while you share their journey, don't forget to continue living your life as best you can as well.  Hopefully, one day they will look back at this time and remember not what they felt, but how they saw you treat others, bring laughs and share joy even when the boat might be going down the wrong stream.  

Re: Understanding lived experience of BPD

Hello @BertandErnie 

Welcome to the forum, you are right, this is an awesome place to meet amazing and understanding people who are full of wisdom.  I am a carer also, and have found this forum has saved my sanity.

 

My husband and I have 2 adult daughters who have lived with BPD.  (I am step mum, have been in their lives since their mid teens).  BPD is different for both of them.  For our youngest, we have certainly experienced the raging verbal attacks, long periods of being frozen out, and she has lived with disordered eating, self harm attempts, and refused any counselling or treatment.  Fortunately, in her early thirties, her symptoms have improved and she has come to realise that we as her parents have our own lives and if we are busy or occupied with our lives or even feeling not our best, it is not a personal attack on her or a failure at all times to be devoted entirely to her.  It's such an exhausting journey for our loved one with BPD and ourselves, and I really hope for your daughter that given she has received a diagnosis and commenced treatment so young that her journey (and yours) might be helped.  

 

Have you read about Marsha Linehan?  Marsha pioneered a treatment for BPD called Dialectic Behaviour Therapy (DBT).  After it was peer reviewed and endorsed as a treatment for BPD, Marcia revealed that she has BPD herself.  DBT is a treatment approach that works for BPD, but it is long term (2 years).  BPD doesn't respond quickly to therapy, it is a long term approach.  Unfortunately, some clinicians try using CBT (Cognitive Behaviour Therapy) with people with BPD and this has show to not be effective in comparison to DPT. 

 

We have also found the BPD Carers Sanctuary an enormous help in understanding not only how to communicate effectively with our daughters with BPD, but also how our daughters experience their bodies, their minds, and how they interact in the world. It has been a great assistance to us and has improved our relationships.  

 

I'm really sorry you find it so difficult to get your communication 'right'.  I know that feeling, and it is really disheartening when all you want more than anything is to be able to connect in a heartfelt way with your loved one with BPD.  It's amazing that you are doing all you can to be understanding and supportive.  It is a long journey, a marathon not a sprint, so please be gentle with yourself.  

 

One thing that you might find useful is Tuning into Teens - it's a parenting approach that involves emotional attunement, and 'hearing' and being present with your teen's experience.  As you know, asking questions and giving advice or solutions is not welcomed or effective with a loved one with BPD as it can be perceived as invalidating.  

 

Take care

Tinker

Re: Understanding lived experience of BPD

Hi, I have found a few things which help de-escalate a crisis of dysregulated emotions, one is simply to state what you see- eg: I can see you are sad/angry/frustrated... Often just by naming their emotions as a real experience with no judgment in your words. Trying to stay neutral and calm is the hard part and I am often not successful myself at doing this but when I do I have been surprised at how quickly my child can stop and re-set their thinking.

Another technique is providing an ear and really listening to them, rather than trying to fix them, just let them rave and acknowledge their thoughts as valid.

And if you feel unsafe, giving yourself and your child a time-out. So I say I don't feel safe with you right now, I will go for a walk and ring you in ten minutes. It gives them time to try and control their own emotions.

I did an online course for family support for BPD sufferers which has helped me, but I still struggle most days despite this. 

I am currently having trauma councelling which is also helping me, but not the whole answer. My loved one needs to do a DBT course so they can manage their own emotions and learn to live with their BPD, but we have found it hard due to lockdowns to access one.

Re: Understanding lived experience of BPD

Sounds spot on @Jaxta .

 

As someone diagnosed with BPD, the strategies you have mentioned definitely help. @BertandErnie 

 

I welcome you to come have a browse through Raising Awareness of BPD - Flipping the Script . It may give you some insight into the world of BPD

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