Last weekend I had the honour of speaking for 25 minutes in front of 250 people about BPD at a mental health conference. Although the months leading up to it were filled with panic and dread and I genuinely was not sure if I’d be able to go through with it, it actually went 100x better than I could ever have hoped for.
I have decided to share my presentation here (in a written as opposed to audio format to maintain anonymity). I trust that my readers won’t plagiarise or copyright the content, but I do want to put this out there as it is a rare achievement I felt proud of! (Some of the slides have come out in a squished format, but I think they’re clear enough).
BPD, ME AND ANXIETY
Hello everyone and thank you for introducing me. I am here to talk to you about what it’s like for me living with Borderline Personality Disorder and anxiety. I just want to say before I start that this is the first time I have done anything like this so if I appear really frikkin anxious, it’s because I am really frikkin anxious! Thank you for bearing with me and I hope you get something out of my talk today!
So what exactly is Borderline Personality Disorder? BPD is basically a disorder of emotional dysregulation; people with BPD struggle to regulate their moods, feelings, behaviours, thoughts and relationships with others. However, it is pretty much impossible to sum up BPD in a single sentence, so I will be going into much more detail later in the talk. Just to give you some background information first, BPD affects about 1% of people and is more prevalent amongst women than men. In order to be diagnosed you have to meet criteria for at least 5 out of these 9 symptoms on this slides, and be at least 18 years old. However, because symptoms often start much younger and can appear to overlap with other disorders, many people might not be correctly diagnosed or treated for years. I was personally treated from the age of 12 to 19 for depression, anxiety, self harm, eating disorders, and later substance abuse. No one really understood what was “wrong” with me, and when I continued not to get better I was told that I was simply “treatment resistant”. Finally, at the age of 19, I was diagnosed with BPD. For me this was a huge relief because I finally had a diagnosis that I felt captured so much of what I had been through. It was also really important in helping me finally get access to the specialised support I needed, as well as understanding more about why I am the way I am.
So what actually causes BPD? As with other mental illnesses, there is no simple answer, but it is understood that both nature and nurture have a role to play. Naturally, some children are born more sensitive than others and find it harder to deal with their emotions. If parents are able to meet their kids’ emotional needs, a child is more likely to develop a healthy emotional skill set. However, if a child is exposed to an environment that is unable to meet their needs, they might never learn these coping skills. People who develop BPD tend to be born as naturally sensitive kids into an environment that isn’t catered to nurture this sensitivity. People with BPD often grew up in environments that they experienced as invalidating. Invalidation happens when someone’s feelings or thoughts are ignored, ridiculed, dismissed, or judged by those around them. For example, teasing a child for crying, punishing a child for expressing anger, or telling a child that their feelings are silly or wrong or untrue. This invalidation can be especially damaging to children who are already sensitive, and when it happens a lot and over a long time, it can start having lasting impacts. The child might start to internalise the message that their thoughts and feelings are wrong, unimportant or unworthy of attention. They must try to shut their feelings down, judge themselves, and invalidate their experiences just like everyone around them has. As a result, they might never learn how to trust and manage their emotions appropriately – which leads to frequent emotional dysregulation. And it is this emotional dysregulation that underlies many of the difficulties seen in BPD.
I’m now going to talk a bit about how BPD manifests. I personally find it helpful to split the symptoms into the surface ones vs the more hidden ones. This is because BPD is often associated with certain behaviours, such as self-harm, suicide and impulsivity, in the media, health care settings and in society. Society focuses on the external because it is easier to make sense of the things you can see, especially with something complex like mental illness. However because of this, these surface symptoms often become the face of BPD – and are what create a lot of the negative stigma that can be hard to shift. This is especially sad as people with BPD often feel massively misunderstood, and I admit it feels near impossible to explain what living with BPD is really like on the inside. My hope is that through talking to you about some of the more hidden aspects, I can make the invisible more visible – and help others understand.
First I’m going to briefly address self harm though as it is one of the behavioural symptoms most frequently associated with BPD. Self harm can take a number of forms which I have outlined on this slide. Although self harm might be hard to understand from the outside, for people who struggle with it, it actually makes a lot of sense. Most people who self harm do so because they have no other coping mechanisms available to them. Maybe they were never taught how to deal with their emotions healthily or maybe their pain is so overwhelming that they see no other option. There are a lot of reasons why people self harm, but ultimately it is a dysfunctional coping mechanism for dealing with overwhelming emotional pain or distress.
Personally, I have self harmed in an attempt to make things I’ve been experiencing inside into something more visible and tangible – in an attempt to make sense of a pain that often cannot be put into words. I have self harmed as a form of punishment. I have self harmed to try and purge myself of feelings that have been too unbearable to contain. I have self harmed to release feelings of anger that were not safe to express externally, and I have self harmed to suppress or appease intrusive thoughts I might be experiencing. There have been times when I have self harmed in an attempt to make myself feel alive, when I have been feeling particularly dissociated – which is something I will cover a little more later. Unfortunately for a long time self harm was a big crutch for me. When I didn’t know how else to manage, self harm seemed like the only way I could temporarily alleviate the pain. Now, I am more in control of these urges than I used to be.
However, not actively self harming does not mean I am cured of BPD. In fact, not using self harm as a crutch is challenging in itself – not just because there is no release for the pain in the way there used to be, but because without the physical ‘proof’ of this pain, people often start to take you less seriously. For example, a few years ago I had an assessment with a personality disorder team in which I expressed my desperate need for help. However, I was told by the psychiatrist that because I had not self-harmed for a whole month, I must be doing really well and he did not think their team could help me. I am pretty sure that if I had gone in with fresh wounds and stitches all over my body, I would have been taken more seriously, and given the support I needed. Instead, his response reiterated to me that using my words to express how I felt inside was not good enough. It backed up all the beliefs I have about my feelings not being important to anyone or worthy of support. A few days later, inevitably, I ended up relapsing; a communication of my pain, both to myself and the outside world.
I just want to highlight that for me, at the time, none of this was a conscious process. I have never planned the process of self harming in a reasonable state of mind with the awareness of what I am doing. In the actual moment, the urge to self harm is so high that it doesn’t feel like a choice, it feels like an instinct and a compulsion and the only way to survive. Fortunately, through my treatment, these behaviours have become more of a choice for me. Now, the parts of BPD that I struggle with the most remain invisible to the outside world. I am going to try and address these difficulties now.
Like I said earlier, BPD is essentially a disorder of emotional regulation. This means that we can find it hard to control how we react emotionally to situations and can swing from one extreme state to another in very short periods of time. We can be managing fine one moment, but then in a total crisis the next, swinging multiple times in a single day. For some people with BPD these swings might be obvious from the outside, but for others we might try and hide them from the world, so you wouldn’t necessarily be aware of how controlled by our emotions we feel. It is not uncommon for me to experience feelings of both joy and suicidality at different times on the same day, just hours apart – and for no one around me to have any idea. As you can imagine, this is pretty discombobulating. BPD is pretty much a never-ending emotional roller coaster that you can never really get off and never know what’s coming next.
However, it is not just our moods but also our relationships and perception of others that can be pretty unstable. People with BPD are very all or nothing in the way that we think. We think in black and white terms, and struggle to live in the grey. This means that we often see the world, including people, as one extreme or another. It is hard to integrate both the good and the bad into one at the same time and to hold all sides of a person or situation in mind. This means that small shifts in a relationship can feel very distressing and throw the entire relationship off balance. We might fluctuate from loving someone and wanting to be around them 24/7 one minute, to hating them and never wanting to see them again the next. For me, these changes are usually triggered by feelings related to rejection. For example, if someone close to me shows me a gesture of love, I might see them as the most important person in the world, who I love with all my heart and could never live without. However, if the next moment the same person did something that left me feeling rejected, hurt or misunderstood, I might switch to feeling like they are the most terrible person on the entire planet who has wronged me so badly that I never want to see them again.
Of course, it is natural to an extent to be scared of rejection and abandonment, but with BPD this really takes on another quality. When these feelings are triggered, it can spiral us into a state of paranoia and anger, mistrust and distress, and even suicidality. Sometimes the feeling of rejection might in no way fit the reality of the situation, but even the possibility that someone might be leaving in some way can send us into a spin. These feelings can even triggered by everyday experiences that from the outside may seem menial. For example, someone cancelling an arrangement last minute or not replying to a text message can set off a complete meltdown. For someone without these difficulties, they might be able to rationalise that their friend is stressed out, forgetful, or sick, or accidentally messed up their dates – and look at the situation as a whole before moving on from it. For someone like me however, I might start to believe that my friend has ulterior motives, that she is trying to provoke a reaction in me, that she clearly doesn’t care about me, that I mean nothing to her, that I am boring, annoying, a handful, that she is choosing her boyfriend over me, that I am unworthy of having friends and that no one loves me anyway, that I am worthless and that I might as well kill myself. You can see how this irrational thinking quickly spirals out of control, and how overwhelming even small interactions or situations can become.
The constant rejection sensitivity that we experience invariably leads to huge paranoia and hypervigilance within relationships. I often question what is real in relationships and what is in my head, as I know I have a tendency to read into situations too much. I might read over the same email fifty times convinced that my lecturer is having a dig at me. I might continually check someone’s ‘last online’ status to try and work out if they are avoiding me. I might seek constant reassurance from those close to me that I have not done something wrong convinced that they are angry with me. We look for clues everywhere and often create evidence that doesn’t even exist. Very often, the ability to distinguish between what is real and what is not can become overwhelming. It takes a lot of mental energy trying to filter out what is what in every single interaction, and sometimes it gets a bit too much. This is also something that absolutely feeds my anxiety.
Sometimes when things get too much, I might start to shut down. This is not a conscious decision or process, but an automatic coping mechanism called dissociation. Dissociation is basically a state of disconnection from reality that many people with BPD struggle with. It is the brain’s way of saying ‘Okay, we are outside of what we can tolerate right now, reality is too much to manage, so we are going to check out for a while, cya’. It is hard to describe what dissociation feels like, but it’s sort of like being drugged with sedatives. It can either make you feel disconnected from yourself, or from the world around you, or both. It can make me feel like I am a robot or a ghost going through the motions, not really living, or like I am in a dream. It can feel like there is a fog shrouding everything around me, or an invisible shield blocking me off from the world. Sometimes things around me become trippy and hard to make sense of. It can make my senses go out of focus, especially my vision which often becomes blurry and distorted. It can make my body feel like it’s not my own or like my brain and body aren’t in sync. Sometimes time or distance feel shrunken or stretched, and it might even become hard to recognise myself or the people or places around me. The intensity of this feelings varies a lot, but are usually worse during times of greater stress or if triggered by distressing situations from the past.
Somewhat related to this state of disconnection, is a feeling of emptiness that many people with BPD struggle with. This feeling is not just a typical emptiness, but the type of emptiness that goes on for ever and that nothing seems to ever fill. This emptiness can make me feel like I don’t exist or am nothing but an empty shell. It can also feel like I lack substance and even an identity. People with BPD often struggle with holding onto a clear idea of who we really are. I find it hard to know what I like or what my interests are, and I struggle to make decisions because I rarely know what it is I want. A lot of the time I look to others to confirm things about myself, because I find it hard to trust my own mind. As a result of this fragmented sense of self, I often feel like a fake person. I end up moulding myself, changing and adapting like a chameleon to the people and situations around me. Sometimes it feels like I am a different person in every situation, with no string of ‘me’ connecting all of those experiences together.
With BPD, it can be hard to hold onto anything other than what feels real right now. When you are in one state of mind, it is almost impossible to consider that any other states of mind exist. When your mood drops, you can’t remember ever being happy. It’s seriously impossible, you can’t even imagine what happiness feels like. Even if you know in the back of your mind that it will pass, at that moment it feels like it will never end, like you’re stuck in that hopeless pit of darkness forever. And then the irony is that during the easier moments, when I feel okay again, I question my disorder entirely and convince myself I am ‘cured’. I stand here right now appearing perfectly functional (well, I hope). But if you had seen me yesterday, struggling to get out bed at 2 in the afternoon, agonising over a relationship difficulty with a friend, sinking into a cycle of self-destructive thoughts, you would have seen a very different version of me to who you see right now.
I also think it’s important to point out that despite the internal chaos of BPD, many people with BPD are actually very good at hiding their distress from those around them. These individuals are often able to hold down careers, studies and other commitments, despite how much they are struggling inside. This might seem like a positive thing because it means that we are able to build lives for ourselves, and make it appear as though we are functioning. However it can also be hugely challenging, as how we feel on the inside and how we present on the outside can become hugely mismatched. Or, people might see one side of us, and assume that is how we always are, which can make it hard to seek support during the times things are not going so smoothly. For me BPD often feels like a real paradox. On the one hand I try desperately to keep up a façade of functionality to the world which I am terrified will shatter. On the other hand, I really do need people in my life to know when I am struggling and to support me within that. It’s often hard to strike a balance between the two though and I usually end up presenting as totally competent, or at the other extreme, as a massive emotional wreck.
I think that one of the scariest parts of having BPD is the speed and unpredictability of the shifts we experience, never knowing what to expect from one moment to the next, or being aware of my reactions but still unable to change them. The most frustrating thing for me is when I know on one level that I am reacting to a situation or twisting reality in a way that makes no sense. I can often feel myself slipping into paranoia, but I can’t seem to stop it. I can rationalise and intellectualise and know that my brain is lying to me, but that still does little to stop the emotional take over. Usually having this insight makes it even harder as I just end up overthinking everything to another level, which definitely exacerbates the paranoia! It’s exhausting trying to change the way you think and feel when the organ responsible for thinking and feeling is not functioning very well in the first place! Sometimes BPD basically just feels like your brain has totally turned against you.
So like I said at the start, I also struggle with anxiety, and often there are big overlaps between my anxiety and BPD. Although not everyone with BPD has an anxiety disorder, about 75% do. This makes sense, because having BPD is like having a faulty smoke detector inside of you. The fire alarm goes off not just when the building is burning, but every time even a harmful gust of wind brushes past. The slightest touch can trigger a huge emotional response, and this also applies to situations that might induce fear. People with BPD tend to live in a state of high alert; the world doesn’t really feel like a safe place but instead is something to watch out for. We therefore have heightened stress responses, we have learnt to look out for the next thing to go wrong, and so experience even neutral stimuli as threatening. Studies have even shown that people with BPD have much higher levels of cortisol in our blood than the average person, and this is the case for people with anxiety disorders as well.
Also, because of the hypervigilance that we experience, and because of how much we struggle in relationships, anxiety in social situations is a frequent occurrence for people with BPD. The interpersonal difficulties I described earlier on, such as rapidly changing perceptions of others, constantly reading into interactions with those around us, easily become paranoid about others’ intentions, and often finding ourselves out of touch with reality, are all experiences that might contribute to and overlap with anxiety. This might not always be experienced physically for people, but for me I do get a lot of physical anxiety. For example, a situation in which I have felt rejected by someone close to me might spiral me into a state of such high physical anxiety that I have a full blown panic attack. Usually I experience a lot of anxiety off the back on interpersonal conflicts and this might last hours or even days or until the conflict has been resolved and my system can finally relax again.
I think ultimately whilst I do see my BPD and anxiety as two separate difficulties, they are absolutely connected and definitely overlap and contribute to one another. My BPD certainly makes my anxiety a lot worse.
To finish off, there are a few myths about BPD that I would like to address. Firstly, people with BPD are often thought of as manipulative. The word manipulative has such negative connotations and puts people with BPD in a really bad light, making us look like we intend to cause harm. The fact is that we do what we can to survive out of desperation and sometimes our intentions can be misunderstood and perceived as manipulative – for example behaviours such as self-harm. The thing is that manipulation implies a conscious and intentional process that needs planning, but people with BPD are far too impulsive to think things through when our emotions are so high.
People with BPD are also often accused of being attention seeking. The thing is that needing attention is a basic human need that most people with BPD were denied of growing up. Unfortunately many of us therefore learnt to get attention or get our needs met in dysfunctional ways, for example through behaviours that might seem attention-seeking, instead of words. Again, these gestures highlight a feeling of desperation more than anything else. And the fact that people with BPD often feel the need to go to such lengths to be seen or taken seriously, including hurting ourselves, is an indication of how much emotional pain we are in. The other thing to realise is that whilst many people with BPD do crave attention in certain contexts, in other situations attention is actually something we massively shy away from.
I have also read sources that say people with BPD lack empathy. I think that this might be because when we are in the middle of a crisis we can get so caught up in our own pain that it becomes impossible to think about the other person’s side. However, more generally, the truth is that the many people I know with BPD, are some of the most empathetic and intuitive people I know. We are not only sensitive when it comes to ourselves, but we are sensitive towards others as well. In fact, a lot of people with BPD empathise so strongly with others that it becomes painful in itself!
Finally people with BPD don’t choose to be this way. There is absolutely nothing glamourous about having BPD; it is no ‘Girl, Interrupted’ movie. If it were a choice there would be none of us around, because having BPD feels pretty much like a living hell. The thing that I want to leave you with is this: We are just doing the best that we can to survive in a world that we don’t always feel equipped to be a part of. And although we can be challenging at times, we also have huge hearts and a lot of love to give. Thank you.