Lived Experience Forum

[TomRiddle32]

I haven't been on these forums in a while, and this is a new account. I will say there may be triggers in my post so I apologise for this.

I am really stuck. I have been living with a condition that I am finding unbearable to live with. It makes life very very hard. And emotions and stress are amplified to insane levels. I honestly don't know how I can keep going on like this. I have never been able to describe what it feels like as it is not really just one thing. But it's very dark. As dark as possible to be imagined. The worst of it by far comes in episodes. They tend to last 3 to 5 days. But this one is already about a week. I was in hospital on Monday and Tuesday which was very traumatic. Each episode gets so dark that I am very suicidal as I want to do anything to escape the pain. So some bad options actually start to look good. It feels like time goes very slowly and each second even the most interesting or exciting thing in the world would be so mind numbing boring. Add on to that a feeling of being overwhelmed and all my thoughts are suicidal ones imagining my own death. I know I am not alone with this. I have had many labels thrown at me and I know the one that is accurate is one that the label doesn't make much sense. The weird thing is BPD has a list of 9 symptoms that when answering more thorough questionnaires I have most of them. But weirdly I don't really suffer that much from those symptoms. The pain is actually the emotional dysregulation. The 9 symptoms are just a result of that in different ways. That's the pain in the episode. The pain outside them is feeling pretty hopeless most of the time. For good reason. Since developing this condition, every little thing is so stressful my jaw becomes sore. Luckily I developed it after I completed a bachelors degree so I have some qualifications. I feel very alone. My mum is toxic and I have to live with her. I feel very let down by people. Most of my supports have left me at some point in this battle. Life feels like a nightmare. Even when I go to hospital, or call the police asking for help- I get treated like a bag of potatoes. I have seen there is a organisation called Spectrum that helps people with bpd. And then...who woulda thought but a 9 month waiting list. I honestly feel like this world is crazy. I don't even know why people want to live in it. All the heart has been sucked out of it by probably evolution under capitalism. I have been looking to get a peer support worker who has recovered from bpd- and even that seems like a process. I can barely afford the psychologist I see and definitely can't afford the psychiatrist I last saw about 3 months ago maybe. I definitely don't want to go into the public system as it actually made me worse. I felt so stigmatised, not empathised with and misunderstood. I keep calling for help and the help is actually the opposite usually. I'm completely and utterly lost with what seems to be a very unresearched illness that definitely isn't a personality disorder. But what I call emotional trauma disorder. Sorry about the long post but please help if possible as I feel like Ned Stark from game of thrones before he died. This affects 10% of sufferers in a very poor outcome. I don't understand why there is not the support systems in place for it? This world feels so heartless to me

[Snowie]

Hi @TomRiddle32 

It sounds like you are dealing with so much at the moment.

I can understand the suicidal thoughts and how hard it is to function everyday with these thoughts going around and around in your head.

You show so much strength and determination to keep going every day.

I hope you find the support you are looking for on the Sane forums. Please keep reaching out for help, we are all in this constant battle together.

[TomRiddle32]

Thanks

I think my post got deleted for the nature of it. I will edit it

[TideisTurning]

Hi @TomRiddle32, and welcome. Or should I say welcome back? 😊 It sounds like there's a lot of difficult stuff going on for you right now and I'm sorry. Also that you've found it so difficult to find supports that feel effective for you. You are deserving of that support though, so please don't hesitate to reach out if what you're experiencing starts to become too distressing. There's Lifeline (13 11 14) or Sane's Helpcentre if you'd just like to chat to someone 1:1. Of course, you're also more than welcome to keep reaching out here on the forums for support from others. You may also like to check out this thread for more on BPD and I'll also tag a few members who may be able to offer more wisdom and support. @BPDSurvivor @Judi9877 @TG1108 

[BPDSurvivor]

Wow @TomRiddle32 ,

 You've described the sum of ME in your post... or the past me.

I know EXACTLY what you are talking about. Not just know about it, but I've lived it. Pushed from pillar to post. The BPD label is highly stigmatised. When mental health units see a BPD diagnosis, they pretty much discharge you and leave you on your own. I've been told by my own treating team that it is very rare they take on people with a BPD diagnosis. I've concluded that it is because BPD recovery is not about prescribing a pill. It is about years of psychotherapy to help change one's unhelpful mindset.

@TomRiddle32 , I've been in that dark place. It's a place I'd never want to go back to. Suicide was so appealing to me. Even now, as much as I've 'recovered', I still have chronic suicidal thoughts. I guess it is a mark of having BPD. I want to clarify though, that these are thoughts. They are not actions. Thoughts come, thoughts go. It is not wrong to have thoughts. I used to be worried by these suicidal thoughts, but now I see them as just thoughts - neither good nor bad.

My entire BPD recovery journey has been in the public system. Due to being so acutely unwell, the private system was not willing to take me on. I completed an intensive 18 month MBT treatment with Spectrum. I didn't feel like I got anything out of it, but towards the end of the program, I realised I had changed so much. This was only the beginning of the work towards recovery.

On discharge from Spectrum, I remained with my Area mental health team. They monitored me for over two years. I had weekly sessions with a therapist there and was overseen by a team of psychologists, psychiatrists, consultants and social workers. In Feb this yr (last month), I was finally discharged from my area mental health team. I still have a psychosocial worker whom I meet with weekly or fortnightly, and the rest of my treatment is overseen by my GP.

 Although it may seem dark now, @TomRiddle32 , there is hope of recovery. I would not have traded my BPD for anything because it has made me who I am. I don't think I would be on SANE forums, sharing my story if it were not for BPD. I have learnt soo much about myself, and other people through my BPD journey. I've also met such amazing people.

One thing that helped me immensely was the use of PARCs. Inpatient units sent me backwards, but PARCs led me to recovery.

BPD is a slow moving illness. You cannot expect to get better in a day or with a pill. It takes a lot of time, energy, determination and perseverance to see things change. You are the only one in control of 'changing your story'. It IS possible. It can be done.

All the best,

BPDSurvivor

[Clawde]

Hi @TomRiddle32 🙋‍♀️ Thanks for being Real

love from Clawde