Posted on March 16, 2019
I haven’t written much about my diagnosis of Borderline Personality Disorder, even though it’s a diagnosis that means a lot to me. It was hard fought: when my psychiatrist didn’t believe me, I presented him with all the research I could find to prove to him that it was at least worth considering. He both apologised and admitted that he was wrong, and it wasn’t long before he bestowed the diagnosis upon me. It was confirmed later that year when I got my Autism diagnosis.
The name Borderline Personality Disorder is not a clear one. People assume that there’s something wrong with your personality or that you only just have a personality disorder. Both of these assumptions are incorrect. The word ‘personality’ in personality disorder refers to the patterns of thoughts, feelings, and behaviours that are individual to each of us and the word ‘borderline’ relates back to early uses of the label, when it was thought to be a condition ‘on the borderline’ between neurosis and psychosis. Even though that has since been disproven, the name hasn’t changed although that is a popular idea. Suggestions include ‘Emotional Intensity Disorder’ and ‘Emotional Regulation Disorder.’
The symptoms include:
I related to a lot of this: the intense emotions, the fear of abandonment, the shifting sense of self. But on the other hand I’m too anxious to be impulsive or get angry with someone. There were enough connections to keep investigating though and that’s when I discovered the quiet presentation of BPD. Where the classic presentation lashes outward, quiet borderlines internalise, blaming or harming themselves. Their fear of abandonment can make them people pleasers and they struggle with feelings of isolation and loneliness, at a higher risk of depression than the classic borderlines. This discovery changed everything; I related to almost every experience I read and that gave me the confidence to pursue it as a diagnosis.
Despite the considerable stigma around BPD, I’ve had a really good relationship with my diagnosis. After so much anxiety and uncertainty, it was empowering to have a name for my struggles and it allowed me to get the support I needed. I’m aware of how lucky I am to have found the right people but that wouldn’t have been possible without the diagnosis.
Having said all of this, my diagnosis has been causing me a lot of anxiety of late. At the end of a session, my psychiatrist made what was probably, to him, an offhand comment about my collective diagnoses, that I might not need the BPD label anymore. I was too overwhelmed by a torrent of emotion to respond before the session was over – even a short session can take me days to process – but then the anxiety began to sink in. The idea of losing it – this necessary, hard fought piece of my identity – was terrifying. Is terrifying. This label explains a big part of my daily struggles and revoking it would be so invalidating, like saying that it isn’t happening, like my difficulties aren’t significant enough to even earn themselves a name. That thought of that happening is devastating.
The symptoms still feel very present to me. I feel things so intensely; they’re like physical forces acting on me. If I’m happy, sunlight is bursting out of me; if I’m sad, my ribcage is collapsing and I can barely breathe for the pain; if I’m angry, I feel like it’s strong enough to bring down buildings. They crash over me like waves and I’m overwhelmed by this panic to get back to the surface. It’s very stressful. I read somewhere that people with BPD are constantly in crisis and I definitely relate to that. Every emotion flares with life or death situation strength and it happens over and over again. They can swing so violently that it makes me physically sick and it can feel like there’s no solid ground to stand on. It’s exhausting. I also feel the emotions of other people, particularly sadness or pain, and it can take hours or days to recover from them.
“Borderline individuals are the psychological equivalent of third-degree-burn patients. They simply have, so to speak, no emotional skin. Even the slightest touch or movement can create immense suffering.” – Marsha Linehan
“One of the biggest things about self harm is the release you get from doing it. My emotions get so strong sometimes that I feel like there isn’t space for anything else in my body, in my brain. There isn’t the space for my lungs to expand; I can’t breathe. It almost feels like the emotion is crushing me and the only way to survive is to open up my skin so that it can escape. It’s like a pressure valve. Once I’ve done it, I feel like everything stabilises and I can think more clearly. If there’s a problem, I can deal with it and if there isn’t and it’s just an overload of emotion, I can take care of myself a little better than I could if I hadn’t.” (x)
Another example of overwhelming emotions…
The fear of abandonment is ever-present, willing or unwilling. The thought of it causes me to spiral into panic so intense that I’m unable to function. Indefinitely. I’m always running, running away from this black hole that’s trying to pull me in. Past abandonments have left me unable to talk or eat or do anything for weeks and it’s taken years to recover from them fully.
I struggle with a deep feeling of emptiness and I sometimes feel like my soul is empty, which feeds into the feeling of having no idea who I am. I feel like I have no real sense of self that’s mine: who I am seems to change according to who I’m with. I take on the traits of others, becoming loud and joke-y with one person and quiet and introspective with another. I don’t know what is actually me. I know small things, like ‘I like flowers with symmetrical petals’ and ‘comedies make me strangely sad’ but I don’t know the big things, like whether I’m a good person or a reliable person or an extraordinary person. If anything, I feel like a child, like I’m stuck as a child while all my friends turn into adults. I can’t cope on my own or look after myself reliably. I feel so intensely sensitive, like I’m too vulnerable for the world I live in and I get too overwhelmed to function properly.
To take this diagnosis away would be to say that this is normal, that I have to just live with it, regardless of the pain it causes me. To take this diagnosis away is to say that I don’t need support and that I should just ‘get on with it.’ That is so invalidating and so upsetting that just writing it brings tears to my eyes. That is why this diagnosis is so important to me and why taking it away would be so traumatic.
All of this is very scary to put out into the world but I feel like the only way to make progress and move forward is to put it all out there and be honest. It’s almost painful, like removing armour that I’ve been wearing so long that it’s fused to my skin and I’m peeling it off with my fingernails. But it feels like the right move. Maybe, in doing this, I’ll start to see change.
“People with BPD are doing the best they can, and they still have to change.” – Marsha Linehan
Category: about me, anxiety, bpd, depression, emotions, identity, mental health, quotes, self harm Tagged: actuallyborderline, actuallybpd, borderline, borderline personality disorder, bpd, emotional intensity disorder, emotional regulation disorder, emotionally unstable personality disorder, eupd
Posted on February 10, 2018
As I’ve said before, I struggle with how powerful my emotions can be. When I’m happy, I feel like every cell in my body is glowing; when I’m upset, it feels like my chest is collapsing; when I’m angry, I feel like I could destroy buildings, and when I love someone, if I could take on all their pain myself, I would do it in a heartbeat. These feelings can completely overwhelm me, making it impossible to think rationally and I’m often left absolutely exhausted afterwards. Occasions like these are closely linked with my autistic meltdowns but they also do occur separately. Over the last couple of years, I’ve gotten better at managing this so I thought I’d write down some of the ways I do this (of course there are still times when something emotionally difficult just comes out of nowhere but we can’t control everything so we work on the things we can).
Allow myself to feel everything – I think it’s so important to actively feel and process your emotions. Ignoring my emotions does me no good. So I let myself feel them and let them settle and usually then, I can feel what the right thing to do is.
Prepare for events I know will be emotional – When I know an event is going to be stressful or upsetting or emotional, I seriously think about how important it is that I attend. If I don’t need to go and I can see that it is going to negatively affect me, I do consider not going. There’s nothing wrong with protecting your mental and emotional health. If I either need to go or think it’s the right thing to go, I make sure that I’m prepared for it. I make sure I have everything I need, I plan the elements that I can (like travel arrangements) to minimise stress, and I do some of the other things on this list. I also factor in the number of people. Big crowds of people can really stress me out so it is something I consider when deciding whether or not to do something and then how I handle it.
Create a safety net – Again, when I know something (an event or period of time) is going to be stressful, I take certain precautions. I’ll arrange an escape plan ahead of time in case I need it or I’ll arrange to have someone I know with me. Most of the time, I’m fine but that’s usually because I know I’ve made these plans and so I’m not worrying about what will happen if something goes wrong.
Build in time to recover – I am easily exhausted, especially at the moment, so I allocate time before and after an event to make sure that I’m as rested as I can be before it and then to give me recovery time after. I struggle with the reality of this: I get very frustrated about tiring so quickly and wish I could jump from one event to another like many people I know can. But even when I’m raging and swearing about this, I do it because I know objectively that I need it.
Writing or journaling – I’ve written about this before but I’m such a believer in writing down your emotions. For me, it gives me somewhere to put them so I don’t have to carry them around with me. I can leave them where they are and move on. It also makes them more manageable because I’ve put words to them; they’re no longer an intangible mess overwhelming me.
Therapy – Talking about how you feel is invaluable and having someone who is professionally trained, someone outside of it all who can look at what’s happening objectively is even better. I’ve been going to therapy for three years now (three years today in fact!) and having that safe space where I can talk about anything is so important to me. I wouldn’t be where I am now without it. I might not be alive without it.
Specific amounts of medication – Certain medications I have taken have had a little leeway about them and my psychiatrist trusts me to use my judgement with them. For example, when I know I’m going to need as much energy as I can get or have really needed some sleep to recover from something, I have increased my sleeping medication temporarily to make sure that I sleep well. Of course, this is something you only do with the guidance of your healthcare professional.
It does still happen. I do still get completely overwhelmed by how I feel but I am better at managing it. I guess these things just make the experience easier on me and everyone else, and less stressful than they were before. Despite all of this though, the strength of my emotions is something I really value about myself. Everything matters. I care with everything in me. It’s hard but ultimately, I wouldn’t want to be any different. Life is bigger this way.
Category: anxiety, bpd, emotions, mental health, therapy, writing Tagged: actuallyautistic, asd, autism, autism spectrum disorder, autistic, autistic adult, borderline, borderline personality disorder, bpd, emotional, emotions, feelings, health, journaling, medication, rest, therapy, tips, tired, writing
Posted on December 5, 2017
Over the years, I’ve had periods of feeling really far away. It often overlaps with my bouts of depression but sometimes it creeps in out of nowhere and I feel completely lost, untethered from everything around me. It fades in and out like a fog, sometimes with no warning and often there’s nothing I can do to dissipate it or avoid it. It can be really scary, especially when it first started to happen, but at the same time, it’s like I can’t really feel that fear or any of my emotions. I’ve described it in different ways but they all describe the same feeling: feeling completely disconnected from myself. But I thought I’d include a few of those descriptions because they give more of a sense of how it feels:
To be completely honest, I’m not sure what causes it, given the overlap of the different mental health problems I struggle with. This is something I have a lot of anxiety about, not being able to pinpoint where individual problems come from. Everything’s connected to everything else. Everything influences everything. But from my own reading, it seems to be common in depression and in Borderline Personality Disorder. It’s often a coping mechanism for stress or overwhelming emotions. The Mind website has a great page about this. My experiences line up best with the description of ‘Depersonalisation’.
I still haven’t found anything that does much to help it but there are a few things that give me a few seconds of relief, of connection. Usually, it’s about tapping into my senses. That seems to bring me back to the world a little bit. So things like opening windows, sitting in the sun, touching leaves or flowers, stroking a pet, having a cold shower or holding something cold… they don’t fix it but they do have a positive effect. Even if it’s tiny, they do create small positive spikes in my mood. They’re like stars in a suffocatingly dark sky. With this, it’s more about getting through it than trying to fix it. It’s about creating one moment after another to carry you through to the other side.
I want to add that I’ve also used self harm to ‘wake myself up’ from this. I’m not advocating it; it’s dangerous and damaging and really difficult to get free of. But if nothing else, I’m honest and it has helped. When I’m in a really bad place, I don’t want to hear that I shouldn’t do it because it feels like the only thing that helps but when it’s not quite so bad, I try really hard to find other ways to cope. I try the things I’ve listed or I try to distract myself. I don’t want to get too far from the point of the post so I’ll come back to this in another post but I felt like I had to include it here.
Friends and family have asked me what they can do to help and if I’m honest, I don’t really know. It can be hard to think about that when I’m just trying to get through it. But I do want to help them help me. At some point, I will write more about this, but I do find it really helpful when the people around me let me set the pace and decide what I can and can’t manage. Sometimes a push is helpful but in this situation, it isn’t. A sense of control grounds me a little bit. Plus, there are some things that are just really hard to manage when you feel like you can’t connect to your emotions. For example, I find it really hard to write songs and be creative when I feel so disconnected from everything. So being able to (and feeling safe to) adapt my activities does help. And talking. Talking it through, figuring out solutions, letting off steam. That really helps.
Category: bpd, depression, mental health, self harm, tips Tagged: advice, borderline, borderline personality disorder, bpd, depersonalisation, depression, dissociation, emotions, feelings, mental health, mental health awareness, mental illness, self harm, self injury, senses, sensory, sensory information, tips
Posted on November 11, 2017
Feeling abandoned is a big thing when it comes to Borderline Personality Disorder. And events as everyday as someone not immediately responding to a text can trigger that feeling. The smallest slight can be incredibly upsetting and anything bigger can feel devastating. It’s never ending and exhausting. And with the fear of being abandoned hanging over you, relationships (of any kind) can be very stressful. They can feel like a waiting game, wondering how long it will take for the other person to give up on you.
As someone with BPD, I feel emotions very strongly and when something upsetting happens, it feels like I’ve been hit by a massive wave and it’s all I can do to find my way back to the surface. The emotion overwhelms me and there’s no room for logical reasoning. It doesn’t matter what else is going on; all my energy is taken up trying to process all of that feeling. It can take weeks to recover and I feel more fragile each time.
And what makes it more difficult is the fact that it’s not completely irrational; there is ‘evidence’ to support the fear. People have abandoned me in the past, both voluntarily and involuntarily, so whenever I try and talk myself out of the panic, my BPD lays out all these examples, ‘proving’ to me that I will always be abandoned. It’s an exhausting cycle.
I’m not going to go through my history of feeling abandoned, example-by-example, but there is one experience that I want to share. I think it’s too important to leave out. A few years ago, someone really important to me cut ties when I was in the lowest place I’d ever been (something they were aware of). I felt completely abandoned and it had a massive impact on my mental health and view of the world. I was so hurt and so confused and for a long time, those emotions overwhelmed everything. I felt broken. But slowly, that weight lifted. It took two years but I’m finally free of it. And that’s amazing. But it’s not the end of it. That experience has affected me, especially when it comes to my relationships and my anxiety around them. And like I said, it’s hard to talk myself out of that fear when I feel like I’m about to go through all that again.
I’ve wanted to write about this for a while but I wasn’t sure how to frame it, if that makes any sense. But a conversation with one of my best friends brought all of this to the surface.
So let me tell you a story:
One of my best friends had just come back from a trip to the US and was desperate to go back. I was in a pretty fragile place already (dealing with another situation where I felt like I was being abandoned) and watching her plan her next trip abroad felt a lot like she was abandoning me. I didn’t want to say anything and I felt guilty for feeling the way I did: she was building her career and she was so excited and here I was, wanting her to stay. But in the end, I had to say something. We’ve always talked everything through so, even though I was terrified of sounding needy and pathetic, I reached out and told her how I was feeling. She knows a lot about my mental health difficulties so I told her how I struggle with feeling abandoned and that I might need some extra reassurance around her upcoming trip.
(I want to add that although it might sound easy, it wasn’t. Part of me – a big part of me – was convinced that expressing these feelings would be the ‘final straw’ and that she would abandon me on the spot, that I had finally become too much to deal with. This is something that I think is often misunderstood about BPD. This reaction is not because of the other person; it’s because of the BPD. The other person could be the most reliable person in the world. It doesn’t matter. It’s the BPD telling you that everyone will leave, that you’re not enough to make the other person stick around. So defying that and telling my friend how I felt was very, very scary.)
And this is the important bit: how my friend reacted. Instead of telling me I was being ridiculous or brushing off my request, she responded compassionately. She told me not to feel pathetic or guilty, that she understood why I was feeling the way I was. She asked me how she could help, and said that she would do whatever she could to make it easier for me. She said, “I am not going to leave you.”
It was such a relief that I burst into tears. It meant (and still does mean) so much to me. She validated my feelings, asked me what she could do, and gave me the reassurance I needed. I wish everyone responded this way. Perhaps ironically for a condition with such close links to invalidation, these feelings often get written off as being oversensitive or overdramatic. And in my experience, that only makes it worse. Things are better now that the important people in my life understand where these feelings come from; before the diagnosis, the only explanation was that I was very sensitive and therefore needed to ‘toughen up’. It was a fault. And that’s what I thought too. But now that we understand it, we know how to handle it, how to approach it.
I will likely need to hear this again and again to combat my fear of being abandoned but that doesn’t minimise the importance of this moment. As I’ve said, change is a series of moments like these, moments I hold very close, like charms on a charm bracelet.
Hey! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as a number of mental health issues. I’m also a singer-songwriter so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.