Illumination 14 – DeAnna A.

“Throughout everything – my emotional upheavals and crises from adolescence through to adulthood – creativity has been a stable bedrock.”

‘Illumination’ is a new series that explores the relationship between mental illness and creativity. I’m interviewing people engaged in art, music, theatre and many more creative avenues and inviting them to open up about their mental wellbeing and the way their struggles with mental health may inform their work. 

If any of the issues discussed in this interview affect you, there are lots of online resources that can help. Visit Mind or the Mental Health Foundation for more information. Alternatively, you can call the Samaritans on 116 123 at any time of the day or night.

Words by DeAnna A, as told to Harriet Williamson.

I’m DeAnna A (you can call me Dee), a musician and activist based in the UK.

My diagnosis is Borderline Personality Disorder, which can sound scary! It definitely doesn’t have the best reputation. People with BPD are thought of as bunny boilers, femme fatales, or loose cannons… think of all the negative representations in films like the unenviable Single White Female, Fatal Attraction or just plain vague and misleading representations such as Winona Ryder in Girl, Interrupted.

Borderline Personality Disorder has a number of characteristics and they can manifest themselves in a wide and wonderful range of flavours. I can speak broadly about the diagnostic criteria and only, of course, my own personal experience of them.

First and foremost is emotional instability (in fact, an alternate name for BPD is ’emotionally unstable personality disorder’, according to the ICD-10). In me, this manifests itself as PASSION. When I’m happy, I’m passionate about whatever is in front of me and this includes politics, music, art, writing, work. It can be a tremendous source of energy and inspiration.

The flip side of this is that my emotional intensity also extends to severely feeling negative emotions – depression, anxiety, fear, shame, dread, you name it. It’s no surprise that I was a goth as a teenager and never fully grew out of it. I’m the type of person that, if I’m feeling bad, I’ll metaphorically bake a goddamn black cake and embrace that feeling.

I’ll throw myself a pity party with black ballons. This definitely comes out in our songs too – I mean, our band name is ‘Muertos’ which means ‘the dead’ in Spanish, named both after my Mexican heritage and my love for their famous spiritual (and gothy!) celebration, Día de los Muertos.

This PASSION, emotional instability and energy can also lead to the unstable sense of self that is common in BPD. With varying moods experienced with such intensity, it’s very easy to completely lose perspective – one moment, I am an activist and live 100% for that. The next I’m a career woman, confident and aspirational and climbing the ladder. The next I’m a bohemian musician and want to run off and leave everything behind and just play the violin. If I do anything I do it 100%. I recently started studying Psychology at university and got a distinction in my first two modules, this is whilst juggling a full-time job and another nearly full-time job as a freelance musician in not one, not two but THREE bands, not to mention being a good partner and mum to my two cats.

I personally have to be careful to not try to be all things to all people. This manifestation of BPD may as well be called FOMO – fear of missing out – fear of not being the right person so you try to be EVERYONE. My obsessions may seem funny and they can be channelled for good, but sometimes it can feel very confusing wearing so many hats and switching between them – the world spins. My approach has always been to grab the opportunities by the cojones, but in my recovery, I’ve started to become more discerning about what and who I allow to take up my time. No is a very powerful word.

There are lots of other aspects to BPD – including the intense fear of abandonment. Many people with the disorder have experienced some form of abandonment in their life that continues to haunt them. That’s the only way to describe it. It’s like a ghost – you may know it’s not real, and that a present-day situation that has triggered off these feelings again is just an echo of the past – but when you get that deep sensation it’s every bit as terrifying and chilling to the bones as encountering a phantom staring at you through the window in the middle of the night.

Sometimes I don’t know how to cope with this phantom and react in bad ways. This feeling of abandonment, the belief that ‘no one likes me, no one cares about me, I have no purpose or worth’ is so deeply experienced that I can begin to question my own existence. The ultimate existential crisis.

Emptiness is another common feeling – when facing severe emotions such as abandonment, it can put everything into question and you may lose sense of perspective, which way is up, which way time-space-or gravity is pulling, or feel that all meaning has been wiped out.

Other times, instead of being an intense emotion, it may also be a low-grade chronic kind of emptiness. People who are addicted to drama, to doing impulsive things and using these damaging coping mechanisms in order to feel something, to feel alive, may often feel empty in the absence of drama. For me, I was so used to instability, so used to things being fucked up, that it took me a long time to feel comfortable and trust in my happy life – that my partner is real and not going anywhere, that I really do have a stable roof over my head, that I do have friends that care, that I am good at my job and not complete rubbish, etc. I was always waiting for the rug to be pulled out from under my feet, as it had been so many times before. I have to remember that the rug is still here.

Like many people with BPD, I used to self-harm. For me, this took the form of cutting myself and I am left with a lovely little geometric pattern on both arms as a reminder of those times. Other times it was taking reckless overdoses, not out a desire to end my life, but out of complete disdain and disregard for my body. I also suffered from a severe eating disorder. Anorexia, for which I was hospitalised on four lengthy occasions, was my preferred method of harming myself. Because of my lack of stable self-image and self-worth, I felt that I didn’t deserve to take up space. I felt that I was never good enough. I began essentially turning myself inside-out, hoping my hard skeletal bones would protect me like some sort of exoskeleton. I coped by becoming as small and contained as possible, and by being crueller to myself than anyone else could ever be. It is a slow suicide to which I hope to never return.

I could go on and talk about the other criteria – the intense relationships, having so little confidence in yourself that you idealise others and then completely lose heart and crash when they show themselves to be mere humans rather than the idols you had made them out to be, the sometimes dissociating from oneself and in times of great difficulty, losing touch with reality like it is behind a pane of impenetrable aquarium glass, the anger that comes in waves, like all the other intense emotions.

I’m giving this interview in the hope that others can relate – because at the end of the day, no one is their diagnosis – we are all human beings. Many aspects of BPD will be part of the microcosm of daily human experience, it’s just that some of us experience it on a greater and deeper level.

I am “recovered”. Well, at least 90% so, according to my former therapist and the lady who saved by life, Amanda Watson. For a long time, more than 15 years, I struggled to get the help I needed. People with BPD have very specific requirements for their treatment however due to lack of funding and resources, the therapy we need (Dialectical Behavioural Therapy or DBT) is unfortunately not widely available on the NHS.

For this and many other reasons, I am a big advocate and campaigner for properly funding our NHS and making sure it is fully publically owned. It is completely unethical that private outsourced companies profit off illness and misery. I have been in the mental health system for more than a decade, and at times was turned away because my condition is TOO HARD TO TREAT (e.g. they knew I needed urgent help, but they could not provide it, so they gave me nothing).

Dialectical Behaviour Therapy is the gold standard and one of the only therapies that is strongly evidenced to help with BPD. I actually feel like DBT should be given to the whole human population because you learn so many valuable skills – in DBT, people aren’t crazy or bad, they just lack ‘skilful means’. As a result, I have started to notice that many so called normal people also lack skilful means and could do with learning about the four modules of DBT – mindfulness, emotional regulation, interpersonal effectiveness (e.g. skilful communication and assertiveness) and distress tolerance, e.g. treating yourself kindly.

In addition to continually practicing the DBT skills, there are other habits I have that help keep me on the course of recovery. My favourite tool in my recovery toolkit is meditation. I meditate EVERY DAY, this means even if I have to get up early before work, or stay up late after a gig, even if, ESPECIALLY IF, I don’t feel like doing it.

Meditation is powerful when you get into a routine with it, when you don’t do it just because you’re in the mood or because it feels nice. Sometimes the difficulties, fears and anxieties that come into my mind are very real, and meditation helps me to deal effectively and face those things rather than reacting in a destructive manner. It’s about facing reality head-on, sitting face to face and eye to eye and making friends with the glorious messiness and constant imperfection that is life. And other times, meditation can help us see through the stories that our mind spins, for that is what our minds do, constantly spin tales. It’s about watching the hurricane rather than getting caught up and swept away by it.

It also helps me in my life off the meditation cushion. Meditation helps me practice taking each moment as it comes, approaching people and situations dialectically (from all sides, not from a self at the centre of the universe perspective), engaging in the world and not buying into stories that make people or things to be all good or all bad. Once I’m clear on my aim in any given situation, instead of reacting in an emotional manner, I can ask myself what would be the most skilful, compassionate and effective way of approaching the situation.

One of my favourite practices that I recommend to anyone struggling with difficult feelings is the Metta Bhavana meditation – “May all beings be well, may all beings be happy, may all beings be at peace, may I be of service”. Practicing metta (universal loving-kindness) takes us outside of ourselves and helps us have compassion for all beings, even those who we disagree with or who may have treated us badly. This focus on others is a large part of my recovery – I do not want to psychoanalyse myself forever, I want to get on and help the world be a better place.

However, sitting in meditation isn’t the be-all-and-end-all. When dealing with some deep, all consuming shit, there may be times when we need to fully feel, embody and appropriately act on our emotions to process them. This is the dialectic between acceptance and change. For situations where change is what is needed, I recommend, no word of a lie, witchcraft. For everyone regardless of creed or lack thereof, what I mean is tap into your subconscious for deeper wisdom that your rational mind is not able to reach, read those tarot cards for a new perspective, write down all your hurts and worries and sorrows and burn them, let them go with the smoke.

Ritual can touch us and help us move on. Humans are not rational beings, much as we like to think ourselves so, and being in touch with the other dimensions of ourselves can be deeply empowering for healing ourselves and fighting for social justice. For more on healing trauma and our connection the universe I heartily recommend the following books by feminist witches and heroes: Witchbody by Sabrina Scott and Witch by Lisa Lister.

Another thing – sobriety. (UGH). I know. I went a whole year without drinking not long ago, for mental health reasons, and I felt great. I fell off the wagon, due to thinking that it was going so well that it’s no big deal, I can handle it and I must be normal now… and lo and behold, soon fell into the chronic binge-drinking that marked my earlier decades. Alcohol is atrocious for mental health, I’m sorry to say, so I have recently bid it adieu again. If I was someone who could do stuff in moderation, then perhaps it would be ok for me, but I’m not, and it just makes me feel everything more intensely, which let’s face it is the last thing I bloomin’ need!

Lastly, creativity – where we started and where we end this interview. Creativity is a wonderful channel for all of our intense emotions, for all that pent-up energy that is suddenly available when you stop misusing substances and alcohol, for when you stop seeking escapism in self-destruction. However, creativity is much more than a way of coping – it is a way of being. We are not here to be consumers. We are here to make our own personal contribution, not just through buying things or by some arbitrary external measure of success but through finding our own authentic form of meaning. It is very empowering to use creativity to decide and express ourselves on our own terms – not capitalism’s terms, not academia’s terms, not your mum or dad’s or peers’ terms – yours.

Throughout everything – my emotional upheavals and crises from adolescence through to adulthood – creativity has been a stable bedrock. Sometimes I think I have no idea who I am, but then I look back, and it all makes sense. I grew up as a musician, a violinist since the age of three, discovered punk rock and riot grrrl when I was 16, and music and art are the things I always come back to replenish myself.

I channel everything through my songwriting, through drawings – even activism can be creative. Riot grrrl saved my life, learning violin saved my life, my goddamn Open Uni social science module saved my life, as did the many feminists and socialists whose words I’ve devoured for decades. It’s through social consciousness and wanting to empower and help other people that I’ve found out how to save myself, and continued to grow and humbly do my best to be of service and thrive in this world.

Muertos – Facebook Twitter Bandcamp // deannaavis.com

Photo credit: Stuart De Voil

How Borderline Personality Disorder Put an End to My Party Days

In the summer of 2010, just before I turned 19 and in my first year of university, I attempted suicide with a month’s supply of my antidepressants and ended up in intensive care, breathing on a machine.

First published by Vice, 10th August 2015

In the summer of 2010, just before I turned 19 and in my first year of university, I attempted suicide with a month’s supply of my antidepressants and ended up in intensive care, breathing on a machine. By my second year, my good-time friends had had enough of me. I was no longer invited out, and became very isolated and increasingly unhappy. I got into an abusive relationship and attempted suicide another two times. I was also bulimic – vomiting everything that touched my lips.

During the first year of my undergraduate degree I reduced my calorie intake to 250 a day – about two and a half slices of bread or five medium apples – and started to go slowly insane. I drank, took drugs and went to clubs with a religious fervour. My body started to cave in. I was starving and my hair started to fall out. My nails went blue. My skin turned to flaking scales. I once ate a burger after a night out and forced myself to run up and down the stairs until I actually passed out to “make up for it”. I went to my campus GP and told him I needed help. At five and a half stone, he said I wasn’t sick enough to warrant eating disorders treatment, and Borderline Personality Disorder was never even mentioned.

People couldn’t keep up with my impulsive behaviour, the manic phases and the fits of crying. The labels of “drama queen”, “attention seeker” and “total fucking mess” followed me around like a bad smell. I tried to conceal it, but being called those things hurt. I didn’t know how to explain that all the stuff I was doing was an attempt to manage my out-of-control emotions, because when I’m going through a bad patch it feels like being on a sickening rollercoaster – only, I can’t get off.

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Stephen Buckley, Head of Information at the mental health charity Mind, describes BPD as “a very broad diagnosis that can include lots of different people with very different experiences”. He told me that BPD can involve experiencing a number of symptoms for extended periods of time, including “feeling worried that people might abandon you; feeling very intense emotions that are also very changeable; feeling like you don’t have a strong sense of who you are; finding it hard to make and maintain relationships; acting impulsively; having suicidal thoughts or self-harming; feeling angry; feeling paranoid, having psychotic experiences; feeling numb; or feeling empty or alone a lot of the time”.

To me, it was more like going from feeling suicidal and totally despairing, to reasonably positive within an hour. The intense mood swings were terrifying because they were – and still are – coupled with impulsive urges to harm myself or do things I know I’ll later regret. The negative emotions I have are immobilising. They crash over me like huge waves, knocking the wind out of me and forcing me underwater. It means living with a devious voice in my mind that whispers ugly thoughts and orders. It tells me that I’m a shitty person, don’t deserve to exist and that my life is meaningless.

Author, pictured right.

According to the NHS, personality disorders often become apparent during a person’s teenage years and are commonly associated with childhood trauma, with eight out of ten people with BPD experiencing physical, emotional, or sexual abuse during childhood, or parental neglect.

I wasn’t neglected by my parents. I had a very happy childhood up until I started secondary school. It was the kind of school that concerned middle-class parents tend not to send their kids to. Discipline in classrooms was practically nil and I was bullied badly, branded a “lezzer” and a “dyke”, greeted with laughter whenever I entered the room, pelted with chewing gum, dismissed by boys as a “rat” and a “dog” that “no man would ever want to touch”. Girls would pretend to be scared of me in the swimming pool changing rooms because I hadn’t realised, age 11, that I was meant to shave my legs.

This continued for about two years, and by the time I was 14, I’d become completely disconnected from myself and overwhelmed by feelings of worthlessness and anger. This was when my impulsive behaviour kicked in, and I started self-harming, drinking, taking drugs like cocaine, mephedrone and speed, and looking for attention from dubious men. I didn’t know what Borderline Personality Disorder was. I began limiting myself to 1,000 calories a day and visiting pro-anorexia websites. I told myself that I’d feel calmer and people would like me and the raging hurt would leave me if I just became thin enough.

It wasn’t until the end of my second year of university – when I was finally accepted on to an eating disorders treatment programme – that I was finally diagnosed with Borderline Personality Disorder. I did a course of Compassion Focused Therapy, which is designed for people with high levels of shame and self-criticism. I learned more about how to navigate my overwhelming emotions, and not listen to the hateful voice that pushed me to starve myself and hurt my body. The therapy was coupled with medication to help me sleep and negate some of the crushing depression that so often accompanies BPD.

Some BPD sufferers hear voices outside their heads, usually with instructions to harm themselves or others, and at the more extreme end of the spectrum, some sufferers also experience prolonged delusions or beliefs that they cannot be talked out of. Others – like Rachel Rowan Olive, a girl I talked to who also suffers from BPD – tend to disassociate or shut down when their emotions become too difficult to deal with. “BPD is hard to describe to someone who doesn’t have it. I never liked the label ‘Borderline Personality Disorder’. It’s the kind of term that makes people back away slowly. I used to think that a lot of the criteria for BPD didn’t apply to me, but as time has gone on, I can connect things that have always been part of me to the diagnosis.

“My main problem is self-harm and that’s the most outward and obvious symptom of my BPD. I experience a lot of anxiety, so I feel like if I’m going to be frightened anyway for absolutely no reason, I might as well make myself frightened of something that’s real and within my control. I experience a level of emotional dysregulation, where I end up feeling really empty a lot of the time. I think a big part of it for me is finding it hard to tell the difference between my emotions and other people’s. I notice it even with fiction – if I’m reading or watching TV I can end up getting panicky because it’s like I’m feeling what all the different characters are feeling at once and I don’t know which emotions are mine any more.”

Nowadays, I try to keep my environment as calm as possible, and use distracting and soothing techniques to mitigate the effects of bad episodes. Most of the time I keep my emotions under control, but there are still times when I swing between crying and not being able to get out of bed, hyper productivity and manic states where I’m tempted to be super-impulsive.

I still have a hard time forming long-lasting friendships. The majority of my friends from school and university are no longer in my life. Part of BPD is forming intense relationships that don’t last very long, and the illness ends up being very isolating. My emotions are so overwhelming that other people find it hard to understand why I’m laughing and bouncing around for no reason, and then suddenly in floods of tears. I don’t usually tell people that I have BPD because I’m afraid they’ll judge me.

Managing Borderline Personality Disorder usually involves a combination of medication and talking therapy. There’s no drug specifically licensed to treat BPD but mood stabilisers, antidepressants and antipsychotics (all of which I take) are commonly used. Rachel uses Dialectical Behavioural Therapy to manage her BPD, coupled with art therapy at a studio in Hackney. She will also plan her week out in advance to give herself a sense of structure and control.

The stigma that surrounds all mental illness is vastly unhelpful, does much to damage sufferers and can prevent them from getting help. As a “personality disorder”, BPD gets more than its fair share of social stigma. People with BPD aren’t cold and emotionless, as Rachel felt others perceived her to be, or attention-seeking and deserving of social isolation, as I was dubbed at university. They are merely trying to manage an illness that’s every bit as real as a physical condition, with the tools they have at their disposal.

It’s very easy to succumb to feelings of frustration and hopelessness when you’re stuck on a waiting list and it might be six months to a year before you even get an assessment appointment for any kind of therapy. Despite this, it’s essential that anyone experiencing BPD-like symptoms informs their GP. No one should have to get to such a breaking point with their mental health that they try to end their life. It’s five years since I was unconscious in intensive care, unable to breathe, with a nurse washing my hair because of all the sweat that had run into it. I owe it to my partner, my parents, my sister and myself not to end up back there.

Things You Only Know If You Have Borderline Personality Disorder

Borderline Personality Disorder is a mental illness that manifests itself in a range of distressing symptoms and abnormal behaviours.

First published by The Debrief, 11th April 2015

I’m lying in a hospital bed and I have little memory of how I got there. I sit up and suddenly realise that I have my second year university exams in a matter of weeks. The panic hits me. I have to revise. I have to do well. What am I doing here? I remember a blur of booze and pills and tears. I reach for the tube in my wrist and I start pulling it out. I’m pulling and pulling and there seems to be yards of tubing inside me. I finally get it all out and the hospital bed is soaked in blood. I get dressed, blood staining the arm of my coat. I run out of the hospital, get on the bus and go back to my flat to revise.

Borderline Personality Disorder is a mental illness that manifests itself in a range of distressing symptoms and abnormal behaviours. It’s been recently recognised as a disorder of mood that affects how the sufferer is able to relate to other people – if you have BPD, you’ll experience extreme emotions and may go through periods where you totally lose touch with reality. Between 60% and 70% of BPD sufferers will attempt suicide at some point during their lives – which is a terrifying thought for me.

Your emotions get really crazy

When I’m explaining BPD to people for the first time, I usually describe it as having overwhelming emotions that are very difficult to deal with. My emotional state can change very quickly, pushing me from euphoric happiness to crushing despair within the space of a few hours. My feelings always seem completely valid to me, when they usually aren’t grounded in reality at all. After a perfectly nice evening with friends, I might still go home and burst into tears because I feel like I said all the wrong things and none of the people I was with really liked me. I have to trust my partner when he tells me that my assessment of the situation isn’t correct, and my feelings aren’t rational. My emotions can feel like huge waves breaking over me, knocking the wind out of my chest and pushing me underwater.

BPD often accompanies other mental health problems

Due to the overwhelming emotions that come as part of BPD, the illness often goes hand in hand with other mental health conditions, including anxiety and depression. For me, it made slipping into the grip of a nine-year eating disorder very easy. I suffered from serious anorexia, dropping to five and a half stone, and this quickly segued into bulimia, making the mood disorder elements of BPD so much worse. It’s a lot harder to cope with life when you’re got that going on.

It’s difficult to maintain relationships

Mental illness isn’t particularly easy for other people to understand, particularly when it manifests itself in so many different ways. When I was completing my undergraduate degree and my BPD and eating disorder were at their worst, I lost most of my friends because  I was judged as attention-seeking, difficult, a drama queen, pathetic, and selfish for not ‘pulling myself together’. I now have a much smaller friendship group, and I am very careful who I tell when I’m having a bad ‘BPD day’. It’s still difficult to form strong friendships, as I’m crippled by the fear that people won’t like me and will reject me like my university friends did, if they find out that I’m unwell. I have a few close friends who know.

You take unnecessary risks 

One of the scariest parts of BPD is that I often have impulses to do certain things that I know are harmful to me, but I think they will make me feel better in the short term and make the pain of overwhelming emotions go away. I have to work very hard to keep myself in balance from day to day, so I don’t get into a place where I think that disappearing for days at a time, or walking around at four in the morning on my own, or self-harming (all things I used to do regularly to try to manage my emotions) are really good ideas. Impulsive behaviour, often fuelled by drugs or alcohol, seems like it will have no consequences at the time, but it always does and it’s very difficult for people who care about you to deal with.

Getting treatment is not easy, but there are ways you can cope

Many GPs aren’t trained to recognise the symptoms of Borderline Personality Disorder, so it can be a struggle to get a diagnosis. Outwardly presenting symptoms like depression and related behaviours like self-harm are often focused on by doctors, leaving the underlying problem unchallenged.I got diagnosed with BPD when I was 19, during my treatment at an eating disorders outpatient clinic. The Compassion Focussed Therapy used to combat my mix of anorexia and bulimia was really helpful, as were books that taught me how to use Dialectical Behavioural Therapy to alter my thought patterns. I try to keep my environment as calm and stable as possible, because when I feel safe, I’m less likely to experience BPD symptoms. I have mood boards that remind me of all the good things in my life, things I have achieved, and reasons why I’m a worthwhile person. There are still bad days, but I have a very supportive partner and family, and two beautiful kittens, and just sitting down and  stroking them can chase away some of the worst overwhelming emotions.