Lived Experience Forum

[PinkPlantLady]

I've been recently diagnosed with BPD and have a history of self-harm and suicidal ideation. I work in the mental health and NDIS industry and really try my best to help others to not go through what I have and focus on the journey to recovery.

For background, I battled for over four years to get someone to listen to me when I said that I needed help and that it wasn't 'just' anxiety and depression and could be solved with prescribing me drugs (obviously not discounting those who struggle with anxiety and depression, but I knew that diagnosis just didn't fit, and I am a supporter of medication as a tool to assist people to recover). The first time I even sought mental health assistance, I was turned away and told it was 'just' stress. That led to me self-destructing, leaving uni and completely changing my entire life trajectory, because I couldn't cope and was dealing with rampant depressive episodes at the time. Luckily I was able to work through that, but in the last two years, my mental health deteriorated rapidly - I escalated to self-harm and had serious tendencies towards suicidal ideation, both of which I still struggle with, and I was then diagnosed with BPD after my current therapist and I campaigned my doctor to finally re-refer me to a Psychiatrist. I am medicated on a large dose of antidepressents and have started taking anti-psychotics to help with my mood swings but I'm still having issues. 

I've asked my GP for a referral to the local Mental Health centre to start a DBT Skills program and complete the Roadmaps program after my diagnoses, and I hadn't heard anything for over a month, so I just called the Mental Health Centre and was told that they never got my referral. I'm ABSOLUTELY CRUSHED.

This isn't the first time that my referrals have been lost, with a previous doctor I had to get my referral sent through four times before it was done, and then it was only done because I sent it through myself. I've had to be the one to call around to source vacancies myself and report back to my doctor because they didn't have time to do it themselves.

Why do I keep getting overlooked? How can someone sit there and discount the risk that I present to myself and how am I so insignificant that I keep getting 'lost' or not listened to? And am I just being unreasonable or should I feel this way? The whole experience has been really triggering to me, the trauma of having to fight my way through the medical system just to be heard and try and get help is overwhelming. I'd be lying if I didn't say that I was writing this to avoid ending up in the ER instead. I (very luckily) haven't had to go down that road yet, but I feel like I'm unfortunately very close. I don't know what else to do.

How am I supposed to help others if I can't even help myself?

I've also just been told that it's now increased to a 12-18 month wait and I honestly don't know if I can last that long like this. That news almost broke me today. I've nearly exhausted my appointments with another provider (community mental health organisation) and I don't know where to go from here. Do I try and get a psychologist long-term until I can get into a program? Do I wait and risk it? I'm so lost and no one has given me a straight answer. 

I just want someone to take this (and me) seriously and genuinely try to help me - how is that such an ask?

[tyme]

I hear you @PinkPlantLady . Such a stigmatised label. I wish it weren't the case.

BPD is such a tricky one. The recovery is a long process. But good to know, it is 100% treatable.

Have a browse through Raising Awareness of BPD - Flipping the Script . It may give you some insight. I'm also sure there are other members who will be able to share their experiences with you @Judi9877 @BPDSurvivor @Bow 

Also, you may find the Australian BPD Foundation helpful with resources, support groups etc. Check out their website.

tyme

[Rhye]

Welcome @PinkPlantLady it's so great to see you've found your way to the forums. My name is Rhye and I'm one of the Peer Support Workers here at SANE.

To answer your last question, absolutely not, that is not too much to ask @PinkPlantLady ‌💜‌ It is unfortunately not completely uncommon though, and having worked with SANE for the better part of a year, it's a story I often hear from our members. So whilst you're struggling with finding support, and that is something you deserve access to, you are in safe place here with people who understand and have walked a similar journey.

You've very courageously shared your story with us today, and I want to check-in to make sure how that's sitting for you? You mentioned possibly needing to access ER in the near future, do you feel okay this afternoon/this evening?

I also wanted to share the number to the SANE counselling line. It's a free service that operates from 10am-10pm Mon-Fri and you can contact them on: 1800 187 263. Please feel free to reach out on that number if you wanted to chat anonymously about any of the issues you've outlined here.

Rhye ☘️

[Bow]

Hey @PinkPlantLady  firstly I love your username, are you a plant lover?? I have way too many plants and I really enjoy spending time attending to them, it’s good for my mental health 🙂

also welcome to the forums, glad that you have found us here. 

i can sadly relate to a lot of what you have shared unfortunately. It took alot of asking, even begging, before I was taken seriously and offered the support that I do badly needed and deserved.

i have a BPD diagnosis as well, although I don’t really connect with it. It’s all part of my long list of mental health issues that I try and manage on a daily basis. 

im really sorry that your referral went missing! And that the waiting list is so long! So frustrating. I’m just about at the end of a 15 week DBT skills group, it’s been interesting. 

i hope that you are safe 

🎀

[Little_Leopard]

Hi there.

Just want to let you know that it’s not a “you thing” so please don’t think it’s anything you have done or that there is anything wrong with you.

The healthcare system at the moment is broken and is well due for a fix up.

I can speak for myself and other close family members who have been ‘lost in the system” so many times that I can not even count.
Although I can not make things better for you I just want  you to know that it’s not anything personal against you. Many people are experiencing the exact same issues you are speaking about.

If you feel up to it I would send the health minister for your state an email expressing everything you have mentioned here. The more people that bring it to their attention the better. They also may be able to intervene and get you the help you deserve.

[Zoe7]

None of what you have had to navigate is good enough @PinkPlantLady The mental health system is broken and unfortunately there are so many gaps in both service delivery and accountability. The wait times are ridiculous and the programs available are not accessible for so many. We keep getting told that mental health is a priority in the political sphere but the true gaps/needs/services needed are not equipped to deal with all those people that need them. It is definitely not just you that has experienced this and I absolutely applaud you for the tenacity and resilience you have shown so far in fighting to get your needs met. In saying that - I also get angry at the neglect shown in many circles to actually listen to the person - you know yourself best and have every right to advocate on your own behalf for what you need. You also have rights (as you may already know working in the industry) but I thought it worthwhile to link here If you feel able to it may be pertinent to forward it on to your GP then maybe look around for one that better meets your needs (at least does what is asked and needed). 

You certainly do not have to go through any of this alone and we are here to walk along with you - welcome to the community 💕

[Appleblossom]

Welcome to the forum @PinkPlantLady 

Yes, I know what it is like to almost "fall thru the cracks" when asking and pleading for help ... in our wonderful system.  Glad you managed to post here.  There are some great people on this forum both staff, vollies and participants.

I knew I could not afford the DBT programs as presented, so mainly do my own research online and do various "practices".  So DIY DBT became my thing, as I do not want to inflate anyone's pocket with my tragedies.  Lets face it, a lot of them are not more competent than us, just not getting hauled over the coals directly.

and you too @Little_Leopard 

Today I was a difficult lady in a hospital, picking up a friend who had been in for 55 days, gently difficult, but difficult.  Told one overconfident doctor not to waste tax payers money when he was gonna give me another mask a little too casually.  My people pleasing days are over, though it is so hard wired I am sure it will creep back in.

The 'narrative' of waiting lists is becoming endemic.  Yes its my turn to play around with concepts.  Feeling a little no nonsense I guess.

Best advice. You are WORTH IT.  DO your best in your work and take care

Apple

[Appleblossom]

meant WELCOME to you @Little_Leopard 

not the coal hauling phrase .... gosh communication can be tricky.... was a bit fired up.  Hope you are well.

[Violacorso]

Hi @PinkPlantLady,

Thanks so much for sharing this exhausting, tiring and what seems to be a never ending fight for complex mental health care. I am in that same boat with you, 100%, I relate. 

I recently moved interstate from NSW and the lack of care in QLD is truly astounding. 
After 4 years off SANE, I recently reached out again because like you, am feeling stuck and to be honest, just placed in the ‘too hard basket’ from GP’s.

The wait for Psychiatrist care is scarily long and after 12 years of Psychiatric care for BPD and others, the struggle some days is too much to handle. 

I couldn’t believe my ears when I contacted a new GP to get the ball rolling to seek out a new Psychiatrist up here in QLD, she looked me in my face and said ‘ but you look fine!’ when I disclosed my multiple diagnosis…. Like mental health is meant to look a certain way?! Talk about stigma!!!

I left that medical practice in tears and minus $140 with no outcome. 

I hope sooner rather than later you gain some relief from these new medications. It’s a long and difficult road but it’s one that’s worth it. You are and will always be worth your fight!!!! 

[Little_Leopard]

Thank you for the welcome.

I am glad you stayed true to yourself and spoke your mind!

hope you are well to!