Lived Experience Forum

[BlueBay]

Hi @BPDSurvivor 

I think maybe I wasn't well enough to take in all the DBT  as it's pretty full on. Yes I went to spectrum last year. I was first assessed by their psych and then accepted to do a small 4 week course. It was one on one with their therapist. It was very short and based on ACT (acceptance and commitment therapy)

my current psych is still wanting me to go back and do dbt again at a Melbourne hospital. But I've told him many times I can't commit as it's expensive and I don't hsve the time that I could attend. 

I feel that from what I've learnt is that my BPD is a combination of no validation or love as a child from my parents. Then my childhood sexual abuse didn't help with my thoughts and brhsviour growing up. 

Reg support groups. About 5-7 years ago I found an online forum specifically for BPD. It was run and moderated by a person who have lived experience. His partner had BPD. He thought it would be good to have a forum and it was good. He then decided to have a BPD support group meetings in Melbourne CBD. They were held monthly. It was a good group. It started  off small but grew quite quickly. It was mostly run by a lady who had BPD. It was good but again it was all new to me and I struggled to grasp and practise the recommendations made.  I made the one hour drive to Melbourne monthly and attend the meetings. 
I can't remember how long after but it was all closed up. The lady ended up working as a consumer advocate at a hospital. And the forum was shut down. 
it's such a shame there isn't a group specifically for BPD. 

[BlueBay]

@BPDSurvivor 

Thanks so much for sharing your story. It's interesting reading your story. I can really relate. 
I met my current GP about three years ago. I was not well and I remember my very first appointment he sent me to hospital via ambulance as I was dissociating in his rooms. After that he knew I had BPD as well as my other mentsl health diagnosis. 
I really trusted my doctor and would see him all the time. 
He decided one day to talk to me about boundaries and Whst he thought would be beneficial. He typed up a contract that stayed i was to see him only every 2 weeks. I could call and he would call me bsvk. Well over the years I would break that contract and make appointments to see him. Sometimes if he saw the appointment online he would delete my appt. and then call me. At first I was so raged. I thought in my head "that's it he must hate me if he doesn't wNt to see me". And then I'd think "oh no he can't abandon me" 

after this rule for almost 2 years I decided that now I will make my next appointment in 3 weeks instead of 2. I'm going to try to extend the length of time I'm seeing him. 
My doctor  was very happy in my decision and that I made it all by myself. 
yeah another issue I have is relying on others for hrlp advice and support. It's like I do not trust myself with my decisions. 

[BPDSurvivor]

Wow @BlueBay , that GP DEFINITELY knows what he's doing. The fact that he set boundaries from the beginning (appt every 2 weeks) is fantastic. I can see how it would have been triggering if you made extra appointments, but I guess it about being cruel to be kind? I don't have such a great experience with GPs....I tend to just go for things I need rather than having them oversee my MH.

When you said, "My doctor  was very happy in my decision and that I made it all by myself", I had the thought that it is remarkable. It shows you are in control and the 'chair' of your treatment. It also shows progress. I know, because it has been something I have had to deal with too. My psychologist is pretty good, they will offer me suggestions and options rather than 'tell me what to do'. I HATE being told what to do. To me, it feels like I am already internally 'out of control', so just give me some control of my life!

In terms of control, another situation I often found myself in was when I was going through a bad phase, I would stop eating. In retrospect, it was because I wanted to feel in control and because I could not control anything else around me, I 'controlled' my eating. It never turned into an eating disorder...it was more 'disordered eating'. In other words, I controlled when and what I was going to eat. I made sure I did not eat anything if someone told me to. I guess I was trying to regain the feeling of control when I was totally out of control.

It's great how you were about to have ACT treatment at Spectrum. That is what I want to get into now. I had an assessment with Spectrum a few months ago, but what told they no longer run these short programs. Since I have already completed 18 months of MBT with them, I didn't think I could commit to another 12 months of DBT - purely because of the 3 hours of travel I would have to make each week. Also, I felt like I had come far enough in my recovery not to need the intensity of 12 months of DBT with them. Hence I have been looking elsewhere for just BPD groups which cover aspects of DBT....but to no avail.

Often, it is said people develop BPD due to childhood trauma. I can see you have been affected by trauma. Mine was a bit different, and I will share it in my next post.

BPDSurvivor

@Anastasia @nxx @Schitzo @LolaPunk @Shaz51 @Determined @WIP @sarvan @outlander @Judi9877 

[BPDSurvivor]

Also, @BlueBay , I would love for BPD support groups to be established....just like the one you attended. Sounded very beneficial, and the fact that the group grew so quickly shows the real need for it.

BPDSurvivor

[BPDSurvivor]

To all my friends, particularly those with BPD,

BPDSurvivor

[Daisy16]

Thank you for starting this thread. I have experienced stigma from within the mental health community for this condition and wonder if other people have experienced this. I would like to hear other people's stories in regard to this.

[Daisy16]

I can definitely relate to struggling with rejection and abandonement. It has taken me a long time to realise that I struggle with these things. I can think of many times where I have felt abandoned by friends, family and even therapists. It feels rotten. I would like to hear your thoughts on attachment and boundaries and how this plays out in your life as I suspect that I struggle with these things too.

[Judi9877]

*Potential Trigger Warning* 

Hi @BPDSurvivor @Daisy16 @BlueBay @Anastasia @nxx @Shaz51 and all those here. Thanks for starting up this great thread @BPDSurvivor ! Very much appreciated☺️👍! It's great to know that I'm not alone with BPD as I somehow feel that way at times. I do know of one other person who has the condition who happens to be a great friend of mine but that's really all the people I know besides the people here on the forums. Thank you everyone for sharing your information as I believe it's a condition that is greatly misunderstood by lots of people including the medical fraternity. 

I haven't got much time to go into my story of what led me to being diagnosed with BPD except to say that I believe my diagnosis extends back to my childhood and growing up in a household with domestic violence with my parents and then hitting us kids. I also had attachment difficulties and trouble with my mother who had an intellectual disability and thought the whole world revolved around her. My father and I had a difficult relationship as he was the punisher in the family and suffice to say, I struggled with trusting men for fear of getting hurt. He wonders even now why l had a major teacher crush in high school with a male teacher who was pretty special because I couldn't connect with him growing up. Let's just say trust and fear run true for me in many elements along with being scared of getting hurt. 

I've got to go but I look forward to following this thread and seeing if we as forum members can 'flip the script' on this very interesting yet wonderful condition that is BPD.  Together, we are strong and we can do this! 

Judi9877

[BPDSurvivor]

Hi @Daisy16 ,

Welcome to this thread! I hope to create a network for people with BPD to come together to share their experiences.

I battled BPD for many years (15+ years). Today, I can say I no longer battle it, but have learnt to embrace it and live very successfully with it. My BPD traits have not 'disappeared', but I now have a much deeper understanding of the diagnosis and I'm able to work with it.

In terms of stigma in the mental health system, most definitely yes! As soon as people saw the letters 'BPD', I felt disregarded, shunned, ignored and left. There are only a handful of people I have come across who have treated me as a 'person' and not a label. These people have had the most impact on my life. They knew how to handle my instability including setting up strict boundaries. 

This leads onto your next question @Daisy16 . How to set these boundaries? Well, I initiated them with my therapist and we talked it through. I knew I needed boundaries to keep both sides safe. I am grateful for these boundaries set because I am able to use my therapist-client relationship as a practice ground for relationships outside therapy. Because I have practised these boundaries with my therapist, I am able to set these boundaries and be more mindful of them when I am with other people. Hence with other people, upon reflection, they are more 'unspoken' boundaries. I hope this makes sense.

Finding a good match for a therapist is essential. They not only need to know how to deal with BPD traits, but must also be a good match for you. 

Communication is probably the hardest, yet most crucial element to BPD recovery. I used to keep everything inside me which bottled up and then I exploded. Treatment has allowed me to speak and seek clarification about situations.

@Daisy16 , there is great hope for pwBPD. Please continue to reach out, especially if you have any other questions.

BPDSurvivor

[Daisy16]

Thanks for your reply @BPDSurvivor . 

It's good to know that I am not the only one who has faced stigma in the mental health system. There were some doctors who refused to take me on when they saw BPD on the referral letter. I think that that it's worth meeting people first, to see what they are like before making a judgement. I also think there is a lot to be said for awareness raising around this diagnosis and that's what I like about this thread. I think BPD and/or its' traits are treatable and manageable-I just think the mental health community needs to see it that way too.

I also think there is a lot of stereotyping of diagnoses in general, and that some people think you have to act, think, behave in a very definite set of ways to match that diagnosis or not match it. It is forgotten that you can have a diagnosis and still be completely different from someone else with the same diagnosis. Thanks again for reaching out. 🙂