May was Borderline Personality Disorder Awareness month, and it was also recently Neurodiversity Celebration week in the UK. It is therefore a good time to focus on Borderline Personality Disorder (BPD).
More people than ever before are receiving diagnoses of personality disorders (PDs), and there are currently ten different main types of personality disorder. Many individuals with PD find it difficult to maintain employment or continue in education, because of the impact their condition can have on their behaviour and relationships. However, increasingly more of those with PD are able to continue studying or working, with support and understanding, and it is not uncommon for many staff at BCU to now encounter students with some type of PD on a frequent basis.
Professor Craig Jackson spoke to a psychology student who was prepared to explain what it is like for many students such as her, who live with this condition. Frances is in her early twenties and studying full time at BCU. She is bright and enthusiastic, clearly willing to talk, and seems to be fun to be around. She certainly is not dull or withdrawn, is happy to be drawn into conversation, and has plenty to say.
Throughout our interaction, Frances referred to her Borderline Personality Disorder as a “disease” and I used the term “condition”. This is worth focusing on as it highlights how BPD can be viewed from different perspectives, either via a disease model, or a biopsychosocial model. Neither are necessarily correct, although I have learned that it makes sense to let the holder of the condition/disease call it whatever they like – after all, they ‘own’ it. So I have used “condition” in this pieces, but Frances will tell you it should say “disease”. We agree to disagree on this one.
As a psychologist I have worked with clients who had many different types of personality disorder. Borderline Personality Disorder (BPD) is probably the most difficult one for friends, family and colleagues to witness, as well as professionals working with those who have it. For most, BPD can be described as the extreme instability of emotions in an individual, typically causing inconsistent, turbulent, and difficult relationships as well as a poor sense of self and identity. It can be very overwhelming for people to experience the difficult symptoms of BPD in a loved one or friend. The intensity, inconsistency and unpredictability of symptoms when the person with the condition is in an ‘episode’, are not unlike most peoples’ view of what “madness” is like. Up to 20% of admissions to UK psychiatric units involve BPD, and some research shows it is present in roughly 10% of those people seeking outpatient mental health support.
BPD is an episodic disorder, so whilst the underlying symptoms will always be there, (hence the diagnostic criteria of a ‘consistent and pervasive pattern’ of behaviours), the more severe symptoms are usually only prevalent within episodes. The more severe symptoms can be quite diverse among those people with BPD, but some of the more common ones can include psychosis-like symptoms, including paranoia and hallucinations, extreme impulsivity (usually in activities that are self-damaging), suicidality, and hypomanic behaviour.
The term ‘Borderline Personality Disorder’ derives from the idea that the condition falls somewhere on the ‘border’ between psychosis and neurosis, with symptomology on both sides of the spectrum. However, due to these misconceptions, and the idea that it is purely a female disorder (with some historical links back to the symptoms of ‘hysteria’) BPD is now one of the most stigmatised disorders. To avoid this old-fashioned view of the disorder, BPD is often now referred to as EUPD (Emotionally Unstable Personality Disorder), or in treatment it can be known as EID (Emotional Intensity Disorder) – this can make service users feel better about their diagnosis because it makes them realise that it is not their personality that is the issue, but their ‘condition’. They are still a valid human being, and may be a good person, but they just have an illness.
Frances is switched on and clearly aware of her surroundings and her place in the world as a young student. Her shock of blonde and pink hair perhaps emphasising her energy. She says “I am not a professional, but I can speak from my heart and speak from experience. I don’t want to give you statistics. I can only tell you my experience, but if you want to learn about something, then sometimes that’s the best place to start. BPD isn’t a ‘quirky’ personality trait. It’s a disorder. A malfunction. It is one of the most stigmatised mental health conditions, with a large portion of health professionals not wanting to treat us, because they see us as ‘untreatable’ or ‘manipulative’ and they do not recognise that PDs are even a condition.”
I offer that many psychiatrists and psychologists believe it is just a “fashionable diagnosis” that is constantly changing and vulnerable to fluctuations in what we as a society view as “normal” behaviour at the time. Frances explains that it is just as hard for sufferers to cope with too, “BPD is feeling everything, or nothing. It’s wanting to die from the pit of your stomach because of the tiniest comment, or looking into the eyes of someone you love and genuinely feeling nothing. It is terrifying in that aspect; never knowing how you’re going to cope with something, or react to something that may seem so mundane to anybody else. You can become so attached to someone that you don’t know where you end and they begin. It is like completely losing yourself in even the idea of the person. You can fall for someone faster and harder than you’ve ever fell before, and it all feels so real. But as if caught in some horrible dichotomy of the illness, it is also needing to be alone because that the thought of that same person touching you makes you feel physically sick.”
Clearly it is confusing for everyone involved. I offer that some might say that it sounds a lot like the extreme emotions one would find in many adolescents – loving one minute and hating the next. This is why many psychiatrists are reluctant to offer a diagnosis of PD in many teenage patients, as the symptoms of PD can be confused with elongated or extreme immaturity. Those symptoms can include any or some of the following: unstable relationships; fear of abandonment; poor self-image; low impulse control; self-sabotaging behaviours; self-harm; suicidal ideation; extreme emotional swings; explosive rage; dissociation; and general pervasive low mood.
I ask Frances how she can possibly live her life like that. “It’s being impulsive, not only in the ‘oh look at that fun cool girl’ sort of way, but in a way that can be so self-damaging. I scare myself. I sometimes feel so completely lost and I have a need to do something, anything in order to be alive – but this can involve risky, costly and dangerous behaviours. Within the same day it can involve being so happy you feel like your skin is vibrating, then so sad you think you’ll never feel good again, so anxious you might explode, so angry you could actually hurt someone, so lost it feels like your body isn’t even yours anymore. But at the same time, people love me for this. One of the most common comments I get is that there is never a dull moment around me, because I put my heart and soul into everything I’m passionate about, I dedicate myself completely, until I have nothing more to give – which in itself can be exhausting but my god it’s worth it, it just means that occasionally I need to take some time to cool down and recharge so to speak. ”
I imagine this may be just as difficult for others around Frances to come to terms with too. “You often get people labelling you as being just ‘moody’, but it is much more. It is wild mood swings. I mean waking up fine, yet going to sleep sobbing, self-harming, starving yourself or even binging because it’s the only way you know how to cope”. There is also a high comorbidity between eating disorders and BPD, leading to more dangerous coping mechanisms.
I can see how being a student and coping with those emotional changes must be tough, so I ask about the other symptoms of BPD and the impact they have. Frances perceptively answers, “Ah, this brings us to dissociation, which is not just daydreaming as many people think it to be. Dissociation is about being so stressed or overwhelmed that your brain goes ‘nope’ and just leaves you. It is being able to completely shut off your brain and body and have two separate entities. It’s a survival mechanism in the traumatised. I like to think of it as a superpower. There are links between Anti-Social PD and BPD, which a lot of people don’t realise (there are studies out there suggesting that BPD is the female phenotypic expression of what presents as psychopathy in males). I think this is one of the main ones I experience – the ability to completely turn off any emotions if I know I won’t be able to cope with them, like extreme compartmentalisation, which I find really useful, but since this can come across very easily as cold or calculating, it’s often seen as more of a curse than a blessing. ”.
Many experts believe that PDs are incurable and they are ways of experiencing and living life that become so ingrained in the sufferer that change or improvement is not possible. Others believe that some changes and improvements to functioning can be brought about through long term use of therapy and conscious attempts at cognitive and behavioural change. Dialectical Behaviour Therapy (DBT) and Schema therapies are the go-to treatments for BPD at present, with some research suggesting they possess the highest lasting success rate, post-treatment.
Frances has faced this issue before, to which she replied quite visibly annoyed, “We are NOT untreatable. I’m so grateful and lucky to be doing STEPPS (Systems in Training for Emotional Predictability and Problem Solving) and it’s giving me the chance I never thought I would have. I never thought I’d live to see my late twenties. I didn’t want to actually, but now I’m having to plan for a future I was never ready for. It is really hard, but so worth it, and treatment is allowing me to do this. I haven’t self-harmed in months, I’m beginning to curb some of the more problematic behaviours, and I have recently come off of my medication which I have been on since I was 17. It’s been a huge few months for me.”
I suggest that such challenging and unpredictable behaviours may make fellow students or event staff quite wary of those students who have BPD. “I’m difficult to be around, I take and produce A LOT of energy. My mind moves a mile a minute, which some lecturers like because it means I click onto things very easily, but it can also just look like I’ve taken a lot of stimulants. I always have some kind of drama, and some kind of pain I need help with, but anyone who knows me, knows I would die for them. BPD isn’t a gift, but it’s almost a super power.
People should not boycott such a large portion of the population because of (a very incorrect) stigma. Give us a chance. I still have bad days, like really bad days. But I’m getting better at managing them. I feel more in control, even whilst feeling everything. But my God, every day is a battle. But it’s a battle I’m not ready to give up on. I’m so grateful to my friends, and my family, and my therapists for sticking by me and not letting me give up. If I could give any advice to anyone at university, or any level of education who thinks they may have BPD, or even just traits of the disorder, it would be get support.
My reinforcers (kind of like a sponsor at an AA meeting) have become my main network. My friends, family, and even my personal tutor have become my anchors. They keep me grounded and allow me to function in a way I never have been able to before.” I can see how some lecturers might find having a ‘Frances’ in their lecture or seminar could be quite challenging for them, and she could easily be mistake for a student who was not engaged or paying attention.
I had to ask Frances if this makes her her own worst enemy, and does she expect too much from people in trying to accommodate her BPD and what comes along with it? “It’s stupidly difficult, and I have had to leave more jobs than most people my age because I had no idea what I wanted to do because I didn’t know myself. But now I have tried a few things and know what I want, it’s so much easier to move forward and succeed.
STEPPS was based on goal setting, and having short and long term goals that you keep checking in with can really help with focus. Having a base that you can come back to, that you can use to re-centre and find what’s important to you in that moment is crucial. Mine has become my group, and my DBT/STEPPS folder, because when I am in crisis they remind me what I need to do. Things like music (guitar or singing), yoga, or other physical activities also have the same effect for me. So definitely give those a try - but the main thing is trust. Find some people that you can trust, that you can call and talk to in a crisis, people who won’t judge you, and who can just ride out the storm with you.”
It strikes me just how well Frances describes her situation and the high level of insight she has, which is not present in all PD sufferers. She is certainly able to focus on the benefits of the condition just as much as the negatives, and this is something that people with PD I have encountered previously did not typically do. It is hard not to be impressed by Frances and her positive attitude, and I ask Frances if she were obliged to be a poster-girl for living with PD, how she would sum it up. She answers without hesitation, and her description deserves the final word on the subject;
“Our creativity, and our ability to understand, to read people, care so deeply, and devote ourselves entirely to you - makes us amazing friends, lovers and family. And I like to think it makes up for the devastation it can cause”.