Lived Experience Forum

[Ellan]

Hi there,

I hope there is someone out there who notices this post, I feel very desperate and hopeless.

I was diagnosed with BPD, depression, anxiety and OCD almost a month ago. When I found out I felt quite releaved and hopeful. I have spent the last 4 years (I'm 22) trying to find the right diagnosis, being told I had depression, or anxiety, or maybe bipolar, or that I didn't have anything at all. I tried out several different anti-depressants and mood stabilisers over the years, talk therapy with a handful of different therapists and psychologists, sought out opinion after opinion from different psychiatrists, tried TMS treatment for a while, in patient hospitalisations a number of times. All of these endevours seemed to be fruitless and only made me feel more desperate and broken.

Although it was nice to have a diagnosis of BPD that finally made sense to me after all this failure, I have found it very hard over the last few weeks to cope. I do not have much support around me. I live with family and they are loving, however my BPD is I guess what you'd call 'quiet' BPD and so most of the things I experience are internalised. I open up to them, but there isn't much they can do. I do not have any contacts or friends outside of my house, my life feels so small, and this is something that greatly depresses me. I would give anything to have friends, and I have a lot of anger and envy at the world for being so alone. I had a boyfriend, however our relationship was quite dysfunctional and I saw that my inability to function and love was harming him. Upon receiving the BPD diagnosis we decided to part ways (it was very mutual and respectful) as I saw the harm I was causing him, and the sensitivity of my perceptions and emotions mean't that everything he did would harm me. I haven't spoken to him at all since the break up (3 weeks ago) and this has made me feel even more alone.

I was a fairly ambitious person, which I think has probably come from my anxiety to do well in life and my parents strict encouragment. I went to uni fulltime, I was working very hard at a career, although I didn't have friends, find social situations terrifying and found that my BPD made me actively push people away, I want friends more than I want anything!

I have been feeling very suicidal the last week or so. This diagnosis feels like a death sentence and all my dreams seem crushed. I do not have anything to live for now. Plus, the daily pain caused by all the thoughts and behaviours I have about life are unbearable, I can barely get out of bed, but the bed is on fire. I have tried to reach out for help. I've called crisis services, which has resulted in welfare checks on me by the police (who don't seem to know what to do with the mentally ill), and also been put in contact with my local crisis assesment team. I have been involved with them before in the past after a previous suicide attempt and felt like I was just palmed off for someone else to deal with. I spoke to them today and found that all they could offer me was either a hospitalisation, appointment with a doctor to assess me (which I have already done countless times) or regular checks on me. I know that DBT and other therapies help improve BPD suffering and I have done some DBT in the past, but I feel like I have lost so much of my future and that there is no point to getting better. I could go into hospital, I could commit to DBT, but the thought that people are able to strive in life and live happily (go out and have fun, travel around the world, pursue careers, experience life) whilst I suffer, is too unbearable. Why was I chosen to suffer in this way? I know that people with BPD can get better, their symptoms can go away, but that takes years and years, I don't have anything to live for (no career, no friends, no purpose), and I am very certain that even if my symptoms remmit, my ability to socialise and function will still not be as high as someone who does not have a mental illness, and this pains me so much. I have already lost all my adolescence and early adult years to this illness, this loss feels too painful to continue living.

I have seen peoples responses to posts on here, everyone seems very encouraging and nice, but I would appreciate if people offered me realistic help. I've heard 'things will get better', 'support is out there', 'take things day by day', 'have hope' and am so sick of these empty words. I'm sorry if I come across as rude, I just feel so desperate and want help!

[Claire_85]

Hi Ellan, I wish I felt up to writing you a proper response but I'm struggling myself tonight. I hear what you are saying and it makes sense. I find that hard too- when people paint rays of sunshine without giving any reason/explanation. I know they mean well but when I feel that so intensely I need someone to really hear my reality and validate it for what it is in that moment. While I don't have BPD, I have done the 1 year DBT program and I did find that really helpful. I was lucky enough to find one with phone counselling which is how it is meant to be run. It is hard going through treatment but but very honestly I've seen so many peoples lives change. Try not to give up hope but it does take time. You are young and with the right support there is hope for you. I'm sorry things are so difficult right now and that you feel so alone. It can be hard too find our tribe in this world, but it doesn't mean you never will. Keep looking 🙂 Please take take and keep sharing here.

[Ellan]

Thank you @Claire_85  for your honest words. I'm sorry to hear that you are also having a bad time tonight I just hope I have enough strength to pull through the DBT and find hope

[Powderfinger]

@Ellan 

It is good you have reached out and deliberately asked for help. That takes courage. From what I read, it sounds like it may be a time for you to rebuild your life. Do different things you are interested in, no matter how long it takes, this is a good start. Journalling is good. You can let everthing annoying, good bad and ugly put and maybe see things differently. 

All the best with everything. 

Be patient with yourself, that is important 

[Gwynn]

Please be kind to yourself - you've been through a lot already with this illness. Breakups take time to heal.

@BPDSurvivor, you might have something to give here?

[BPDSurvivor]

@Gwynn , thanks for tagging me.

@Ellan , your post is only oh so real to me. You have clearly articulated the struggles of a quiet borderline including the emotional turmoil, instability, confusion and frustration.

It's great you have been able to reach out. BPD is not a quick fix. The underlying issues are complex and take time to work with so that do you can practise enacting change. Talking therapy is highly beneficial with the purpose of supporting a change in mindset.

For 22 years, @Ellan , you have been ingraining your brain to think a certain way by creating neural pathways. This then becomes instinctive e.g. When something goes wrong, I self harm; when somebody says something I don't like, I flare up in anger. The idea of talking therapy is to create new, more helpful, pathways in your brain. After 22 years, can you see this takes time?

I am glad you have had time to reflect on what is happening and what is not working for you. Being aware of what is not working allows you to work with it. I have had BPD for over 15 years. Although it has been a huge struggle, I can now say that I am proud to have BPD because it has taught me so much. It has made me aware of myself and other people. It has allowed me to realize that it is up to me to 'change my story'. On my BPD journey, I have learnt so much and I'm so grateful for the support I have received. 

I underwent 18 months of intensive MBT (mentalisation based therapy), twice a week, for 4 hours. It was a huge commitment and at the end of the 18 months, it was only the beginning of change. The rest was up to me.

@Ellan , BPD is not a life sentence. Rather, it is an amazing journey of learning - learning about self and learning about others. It is one of the few mental health illnesses whereby you are in full control to make a change. It is not medication. It is not long hospital stays (although these may help a little). Ultimately, it is your choice. I'm not saying it is easy - it is a lot of hard work because it is about doing things that are outside your comfort zone and everything you instinctively don't want to do. For example, when I'm upset, are usually shut down. Being aware of this allows me to do the opposite where I force myself to reach out instead (weird and uncomfortable, eh?). Another example is when I label people according to their last action i.e. If they have annoyed me, they are an annoying person despite all the good theyve ever done.

@Ellan , for you it is about living the NOW. Living in the now means you are in control of the now. You cannot change the past and what has happened - thinking about this will only fill you with regrets. There is no reverse gear in life. Conversely, living in the future brings anxiety and dissatisfaction at all the things you want to achieve but don't feel you can. The biggest impact is living in the NOW.

See BPD as a challenge and a friend. A learning experience which enables you to grow as a person. For me, it is one of the most amazing experiences for which I am highly grateful for. There is no such thing as living life on a bed of roses - remember, roses have thorns. No one has a perfect life. People post their life's highlights on social media but this is not real life. Real life has ups and downs. BPD is about navigating these ups and downs.

BPD is not a life sentence. @Ellan , it will make you a better person - one who can understand others and reach out to others.

There are great things to come.

BPDSurvivor

[Ellan]

@Powderfinger @Gwynn @BPDSurvivor 

I thank all of you for your kind words and support, it means a lot to hear hope from other people with a lived experence. You all sound so strong and determined, I hope I can get to that point too one day.

@BPDSurvivor The idea that I have to undo the behaviours I've spent 22 years ingraining in myself is extremely daunting. I feel like this illness is so linked to who I am as a person, that it is almost like I have to change who I am completely. Not only that, but I have to deal with daily negative thoughts and struggles with suicidality. I think this overwhelms me, it feels insurmountable! But it is comforting to hear that you have been able to achieve that.

That is so strange to hear that you are thankful for having BPD, I've never seen it with this perspective before. Is this a state of mind you have reached only recently? Was it hard for you at first to accept and welcome with open arms? I feel like it is something that must be embraced in order for recovery to occur, like becoming friends with your worst enemy, very hard to do.

I think something I am curious to know is how did you continue to find hope and live your life when you were at the beginning of your therapy? I know that MBT and DBT are not quick fixes and take a lot of work before any results can be seen. How did you cope with daily stresses whilst you were waiting for the therapy to work?

I've struggled with the idea that BPD can be treated and that, unlike other mental illness, the person suffering with it has power to change it. I just wish sometimes that there was a pill I could take to make it all go away, like with depression. I feel like, yes I do have the power, but the illness itself stops me from doing anything. Its like a massive tease, someone holding above me all my hope and life, and I'm below unable to reach it. I'd be interested to hear anyones thoughts on this perspective.

You also menton how when you are feeling down you shut down and push people away. I find that even when I try and reach out to poeple in these situations, a lot of my behvaiour can still be maladaptive to the person I'm reaching out to, just in a different way. As in, yes I have seeked help from someone, but I am really just trying to get some form of validation and attention from someone to make me feel like a victim/make my pain feel justified/understood/make me feel loved and wanted by someone, if that makes sense. How do I live honestly and openly and reach out to people in a healthy way?

I have been reading a lot online about BPD and have come across a lot of information that says people with BPD are manipulative, bad and unable to show empathy. I have such an unstable idea of who I am that I start to beleive I am what all these people say, which frightens me. People saying that it is best to run as fast as you can from people with BPD. This hurts my soul so much to hear. I can say that maybe these people have just had particularly bad experiences in their life to think this, maybe they are hurt themselves, but it just hurts to be labelled and judged in this way by people I don't even know. I'd be interested to hear what peoples thoughts are on this. I don't truly beleive that people with BPD are bad, they're just broken, but I would like to understand this perspective and where it is coming from.

Sorry for all the questions, don't mean to put any pressure on you, I'm just really glad there is someone I can talk to who understands.

[Powderfinger]

@BPDSurvivor 

I do not have BPD myself. I read through your response. I just want to say wow and how I felt such a sense of pride for you. Meaning being inspired and proud of you. 

You're a wonderful, positive and upbeat person. In no way am I dismissing the extremely hard work you have had to put in for a very long time to get to where you are now, I just find it admirable. It is also very humbling and actually in some ways has given me the kick up the a... I needed. I thank you for that. 

I was with a person last year who was diagnosed BPD and Bipolar. I accepted the person for who they were at the beginning. Unfortunately it got really bad for me and I had to leave. I was in serious danger. The police needed to get involved and I needed to go to court to get a Domestic Violence Order for my own protection. 

During the relationship, I could truly see her struggles and I really did my best to support her and stick with her. It just got to the point where my safety became a concern and priority. I was very scared and she was extremely disillusioned to the point she truly believed what she thought was happening. There was no convincing her that it wasn't true. Her mind was already set. The right thing for me to do was end the relationship and get help as I was in danger. 

Anyhow, thank you for all you wrote. I will read this over and over again when I'm feeling I need a pick me up. 

Well done you for all your hard work. Thank you for inspiring me. 

[Teej]

Hi @Ellan and welcome to the forum 👋🏻😊

I read your post and could identify with much that you said and wanted to respond as well. The info and experience that @BPDSurvivor has shared is invaluable....and pretty inspiring. 

I was misdiagnosed with BPD (the quiet internal type as well). The fact that I was misdiagnosed is kind of irrelevant though because my experiences were what mattered not the label. 

I went through many attempts and self harm episodes and hospital admissions at the peak of my 'illness'. I'm not that comfortable with the word illness because these days I tend to think of many things as challenges rather than an illness. 

I have hope for you because I went to group DBT twice. There were a couple of participants your age who were making big differences to their lives and quality of their lives. Like @BPDSurvivor they put in the hard work to work on their life's challenges with BPD. I saw first hand the changes they were making, and in particular the changes in relationships. Whilst I didn't at that point move as forward as much because I struggled to identify with some things, I did learn lots of life lessons from doing DBT. Although I didn't struggle as much with relationships in the group I can attest to developing better skills in dealing with my relationships. My therapist thinks everyone should do DBT once for the skills that help with everyday life. 

From my personal experiences and from learning from people irl and through my time on the forum I think the first and most important part is acceptance of the challenges that come with the diagnosis. You are not your diagnosis and you ultimately get to choose how you manage the challenges. If you believe you've been diagnosed with something that fits for you then learn everything you can about it (only things that you think are helpful, as you've highlighted there is lots of unhelpful information out there too), and find acceptance that this is a set of complicated challenges, and it sucks and it's not easy but it's doable. This is mostly the logical part. 

The hardest part is the daily struggle to get through without causing more harm to yourself or making things worse. Like you I went through a big (I'm talking a few years) of being on the constant suicide roller coaster. I was often told that I couldn't really do therapy until I was stable. I hated being told words like hope and faith and that it will get better. I felt like none of that was applicable to me. I would end up being triggered by little things and get very suicidal. I'd reach out for help and be told the same things over and over and I just wanted the magic wand to feel ok. The crazy thing is that I eventually started to understand my magic wand thinking but it didn't lessen the distress. 

Long story very long, the things that helped move me forward was hearing from people I respected that I'd been here before and got through and that they had faith and hope that I'd do it again. I didn't like hearing this at all at the time, and sometimes in the beginning it made it worse to hear those words and constant talk of mindfulness. Eventually though I started to understand that those people could see what I couldn't. My high level of constant emotional distress meant that I couldn't logically think through things or see patterns. SANE has had a huge part of me getting this far. Both the forums and helplines were hugely helpful. The words 'hope' and 'faith' and 'you've been in this place before' repeated over and over eventually stuck. The words of my 'big emotions' from support people used to annoy me but then I came to understand them better and live with them. The other thing that helped was having my therapist who has stuck by me and believed in me for 9 years now. I don't know how she's done it but the supportive actions of hers helped me to stay on this earth and begin to deal with my challenges in a healthier way (most of the time, because I still fall into the old traps from time to time). Lastly I've slowly worked out to live in the now, like @BPDSurvivor this is a hugely important thing. It's helped to alleviate so much anxiety and depression, although if truthful not all. 

I was diagnosed with adult ADHD (without the hyperactivity) in the last twelve months. It's taken me until the past few months to accept it and really learn and take on the challenges. My hyper rejection sensitivity and emotions are more related to this than BPD. It wasn't until recently that I learned about the differences and complexities of having adhd and finding really helpful resources online (and an amazing psychiatrist who gets it all) that I've begun to honestly face the challenges head on. I'm still on my roller coaster but more days than not now I have a plan or guide to move forward. When I'm going well, I live in the now and focus on developing the life skills I need. That's a really daunting task at my age. Since my diagnosis, one of my kids in his early twenties has been diagnosed with ADHD as well. He has gone through the struggle of learning that he'll have to work twice as hard as most to keep up in this life. He's now embraced it though, and is working hard on developing skills and strategies to help him be successful. There will always be challenges for him too but he'll learn to deal with them. Your brain is young like his. You have different challenges but can learn the skills to overcome the biggest obstacles. 

When I was first diagnosed with BPD my then psychologist told me that it was a strength and a struggle. @BPDSurvivor has embraced the strengths and the struggles and so can you. My latest thinking is that everyone will at some point find themselves in a health situation (either physical or mental) that will change them. For everyone there will be new strengths that were previously unseen along with the struggles and challenges. 

On a strange note to end I wanted to let you know that it's a life long thing but that changes do happen and falling over and going backwards is part of moving forward. I have spent the last week with intense suicide ideation. It caught me off guard. Luckily I reached out to the support networks I had available and today is my start again day. I'm back to trying to do the hard work to create a life worth living for. 

I hope this isn't too much of an essay. I've honestly messed up so much along the way but I can connect the dots better most days to take a step forward instead of being stuck in the deep dark cycle of constant distress. I hope it helps a bit. Good luck for getting through and embracing the strengths and the struggles. 

[BPDSurvivor]

@Ellan @Teej @Powderfinger @Gwynn @Claire_85 

Thank you everyone for your unending support here. It is great to see you all uphold and strengthen each other.

As @Teej has mentioned, you are NOT BPD @Ellan . You are YOU. You may have traits associated with BPD, but it should not define you. Have you all seriously considered the 9 traits of BPD?

• Fear of abandonment. 
• Unstable relationships. 
• Unclear or shifting self-image. 
• Impulsive, self-destructive behaviors. 
• Self-harm. 
• Extreme emotional swings. 
• Chronic feelings of emptiness. 
• Explosive anger. 
• Feeling suspicious or out of touch with reality. 

In honest truth, who doesn't, at one point or another, feel these things? The defining factor is that these symptoms hinder the daily functioning of people diagnosed with BPD. You are right @Ellan , a pill will not fix things. You are also right in saying 'it is almost like [you] have to change who [you are].' In saying so, it is about reflecting on what the ideal you looks like. What would you like your life to look like? Once you have established this, you can see where you currently are, then determine the stepping stones to reach that ideal you. This doesn't mean you have to change completely, but it does mean changing the parts of you which are deemed maladaptive. Ask yourself, 'how are things working for me?' If things are working, there is no need for change. However, if the realisation comes that things are not working, this is your chance to make a change.

As for suicidal thoughts, this is another distinguishing factor of having BPD. Believe it or not, I have them everyday. But remember, these are only THOUGHTS. They are not 'good' thoughts. They are not 'bad' thoughts. They are THOUGHTS. It is what you do with the thoughts that matters. If you can make yourself sit with these thoughts long enough, guess what? They will pass. This is part of the therapy work. To realise that thoughts do NOT define you. This is probably one of the hardest parts to having BPD - suicidal ideation. As someone asked me recently, 'how can you be suicidal, yet love life?' I cannot answer that one.

I learnt to accept BPD after my intensive MBT therapy. I learnt to understand it so much more, and although I did not feel or see changes during therapy, after it, I realised all the subtle mindset changes in my brain, which lead to a recovery trajectory. Rather than view BPD as an enemy, I guess it is about learning to live with it. People with BPD can live a very successful life. Don't be too hard on yourself. I see BPD as an emotional child trapped in an adult body where the emotional being just hasn't grown up in sync with the body. I also see it as having 3rd-degree burns to the emotional self - every bump is excruciating.

At the beginning of therapy, I guess I'd had enough of everything. That's why I ended up seeking therapy. I was so disheartened by the stigma. People simply don't have time for people with BPD because it cannot be fixed with a pill. It takes time and energy to re-train mindset. As soon as I began reaching out, I found some of the most amazing people. Real people. People who could see past my complex personality and not blame me. People who were ready to sit with me and untangle this one giant tangled knot. People who would not give up on me. These people were highly-trained therapists. It was not family. It is good family is there to support, but if you have grown up with them all your life it is had to enact change. 

One of the hardest yet most important part of healing was setting up boundaries. I set boundaries for myself so that I do not leech onto people and suck their life out of them. There is a fine line between seeking help and leeching. This is different for everybody. Communication is vital. Discuss plan of action for when crises occur e.g. when I am angry, please don't try reasoning with me. Give me space; when I self-harm, seek medical advice; if I become abusive in anger, walk away; contact time is between 9-5pm. This all sounds weird, but setting limits for yourself is a protection for yourself as well as those you love. As a borderline, I tested boundaries. I hated rules. I hated being told what to do. I hate people leaving me. I hated being told 'no'. These are things that I have had to mitigate. I've had to set strict boundaries - be cruel to be kind. @Ellan This will help when you try to reach out to people in times of distress and will reduce, if not elimate, maladaptive behaviours. For example, set a boundary that if you self harm to the point of requiring medical attn, medical attn will be sought despite any ranting or raving. I myself have set clear boundaries with my therapists. I will only have contact once a week for maximum 1 hour. Outside this, I will seek other services. This sounds harsh, but it is to ensure people are not drained. 

You will never say someone in a wheelchair is bad because they cannot walk. This means, you cannot say you are bad just because you struggle with emotional regulation. There are good things to come.

BPD is the most enlightening journey one could have. Through this journey, I have been inspired by people. I have inspired others. I have formed strong bonds with people. When I look back to how I was, I can only say 'WOW'. BPD traits may stick with you, but it's okay because it makes you a better person. You cannot win a war if there is no battle. You cannot taste victory without a battle.

Fight on! Soldier on! And learn who you really are. This is the way...seize it.

Fighter, friend and confidant, 

BPDSurvivor