Living with BPD can vary drastically from person to person so no two people's experiences will be the same. It is important to remember that people with BPD are people first and foremost, and are NOT defined by the diagnosis/label
Below you can read Borderline Arts' Founder Sarah's story, to get a glimpse into one individual's experience. This article is an adapted combination of two stories , written by journalist Wendy Roberts and published in the Derby Telegraph 2013.
For 16 years, Sarah has been fighting anorexia and a condition called borderline personality disorder (BPD). It is a daily battle. "Most friends and family only see me when I'm having a fairly good day," she says. "When it's bad, I shut myself away from the world. People who don't know me see me as an able, intelligent articulate girl. They don't understand or even believe that I have such a debilitating condition”. What is important is that the brave and brutally honest young woman is sharing her story. She wants people to read what she is going through and how she copes.
Anorexia, suicidal thoughts, self-harm and [unstable] moods are what Sarah has to cope with in her life. Sarah was just a teenager when she tried to take her own life. And between suicide attempts, she was severely self-harming and restricting her food intake as a form of self-punishment. Sarah was a teenager when her mum first noticed the wounds on her arms. She took her to the doctor and was referred to the Child and Adolescent Mental Health Services. Sarah left school with a bunch of GCSEs but when her health took a serious dip, she was forced to drop out of education. Struggling to maintain her weight, she spent time some time at home with her parents. "I had chronic feelings of emptiness and a complete lack of self-worth," she says. "I had distortion of reality and had started to self-harm. I'd been restricting my eating and would only allow myself a cold shower as punishment. I must have had BPD then, but as the personality is not yet fully developed, it isn't diagnosed until adulthood. It was well over a year later when I started to eat better. My parents were distraught to see how poorly I had become. These days, on bad days, I just go to bed, I take my pills which knock me out and I try and sleep it off. I can be in bed for days but I think that's the safest place for me when I'm feeling bad.”
Today is a good day for Sarah. She has got out of bed and is dressed. She is bright, bubbly and chatty. But tomorrow, things could be very different. She may not be able to get up. She could feel low and depressed and be too frightened to leave her little bungalow. A slight change in mood or a tiny (real or imagined) incident can trigger her off. Her day can quickly get worse. Mood swings, from suicidal to [euphoric], can pose real dangers for Sarah – and paranoia simply consumes her. "I have severe mood swings, can have no rational thinking and experience dangerous psychotic episodes. I self-harm, hear voices in my head and feel very insecure. When you're faced with these problems, simple things can prove hugely difficult. My head is always full of stuff. I nap all the time because I'm so tired." Her mood changes and lack of stability make it impossible for her to get a job. She would like to join a choir or an orchestra but she lacks the drive to do it. Her paranoia and psychosis have caused rifts with friends and problems with her family. And maintaining a romantic relationship would be impossible right now. Sarah's deep fear of abandonment and her erratic moods would certainly push someone away. Sarah admits she struggles to cope on a daily basis. Doing simple tasks like cooking a meal can be impossible. And if she is feeling low, upset or paranoid, she simply stays under the duvet. "Imagine waiting for the bus and when it doesn't come, thinking that someone is out to ruin your day and it's all part of the 'conspiracy' against you," says Sarah. "Everything is personal. I can be walking down the street and the voices in my head start telling me that I'm being followed. I 'zone out' and forget what I'm doing."
The psychotic and dissociative episodes are scary and Sarah never knows what she has done until she has come out of one. Once she woke up to found she had cut all her hair off. Another time, in the middle of the night, she was convinced there were dangerous men in her house forcing her to harm herself. She says, “I ran into town and didn't even have my shoes or coat on." She left her house unlocked and ran off, ending up in a very vulnerable situation. When times get really bad and she can recognise her mental health is deteriorating, she calls for help. She has friends who come over and stay at her place. Her parents and one of her sisters also live locally and do all they can to help. "I try to contact friends when I'm in a panic. They call for the paramedics if they think I've taken an overdose or harmed myself," she says. "But I find it hard to reach out for help, as I hate being such a burden to people."
When Sarah was rushed to hospital following another suicide attempt in her 20s, the true extent of her problems was revealed. She was in Australia working on community projects when she took an overdose. "Since then, I've been in and out of hospital for my anorexia but I've not had treatment for Borderline Personality Disorder," she says. "I spent 11 months in hospital in 2010/11. I am definitely better than I was then. I was admitted to an eating disorder unit in Oxford for a few months, and it helped a lot with the anorexia, they had no expertise in treating BPD. I was discharged once my weight was stable, but my BPD symptoms were rampant. Two days later I was admitted to an acute psychiatric unit in Derby. But the problem was exacerbated. The team could keep me from self-harming but that was really just by locking me up. They didn't have the time, expertise or staff to actually treat BPD and they had no experience at all of eating disorders and my weight plummeted. I hated my time in the acute psychiatric ward. It was a horrible place to be. I had friends and family to visit me and I made friends with another girl on the ward, which helped. But it was not a nice place to be! After those two months in the acute unit, I was then transferred to another eating disorder unit in Leicester as my weight was getting dangerously low. It was there that I was officially diagnosed with BPD. I had some fantastic sessions with a psychiatrist. He had a good understanding of borderline personality disorder and gave me amazing one-to-one support."
Sarah's weight is stable these days, and her eating habits are better than they were, but when she is having a really bad day, she just feels that she does not deserve food. Fighting that thought and making herself eat is exhausting. She is managing her BPD symptoms as best she can, but it is still a pervasive struggle.
Sarah has her own theories as to why she developed BPD and anorexia. She would like to keep some of the reasons to herself, but she says she has always felt like she is a very needy and insecure person. She describes her childhood as loving but says she was a little girl who desperately craved love and attention all the time. "I don't blame anyone," says Sarah. "I believe I was born with some of these problems. It's the way I'm wired, but that doesn't mean I don't want to be well. I'd love to lead a normal life. It's a difficult condition and I know it's hard for people to get a firm understanding of it. But I am passionate about breaking down the stigma that those with BPD are merely their label! We are people first and foremost! My life is much more than just this condition. I love to sing, hang out with my friends, create art and watch comedies. I love my cats (and animals in general) and I am passionate about collecting and photographing Lego figures. During a spell when I was well, I travelled the world and also earned a degree in Creative Expressive Therapies. Over the past few years, I have not been well enough to hold down a paid job, but that is something I am working towards! I am learning to feel proud of myself for what I achieve whilst simultaneously battling this condition! The illness is something that I have to fight, it is not who I am!”
When the above article was originally written in 2013, there were no services available for people with BPD who live in Derby. Thankfully now this has changed. Sarah has accessed Dialectical Behaviour Therapy and is now having therapy to deal with the deeper roots that cause the symptoms. Sarah still has ups and downs, but the amount of ups is certainly increasing! She had to spend a few months in an acute psychiatric ward in 2016 and had a relapse of anorexia in 2017, but she has also set up a Registered Charity (Borderline Arts) to raise awareness of Borderline Personality Disorder and she is learning British Sign Language. "I still struggle, but I have more hope and resilience now and I am in a better place to tackle the symptoms and to embrace all the good things in life".
Note from Sarah: It is now over 11 years since that article was written and I’m pleased to say that I am in a much better place. I work hard these days trying to balance my time well - this includes scheduling a lot of time for rest and attending groups and activities, which help me maintain and improve my well-being. Not taking on too much is vital for me, as I get easily burnt out and it takes a long time to recover. So, I am learning to listen to my body/mind
rather than to the impossible pressures of society. I am accepting that it is ok that I cannot ‘keep up’ with the ‘normal’ pace of live nor hold down a full-time job etc., without becoming unwell! I can still have a full life and contribute to society in my own way. When I live life in this way, this much welcome stability means I can enjoy doing some volunteering and small bits of permitted paid work, which I find very fulfilling. Additionally, living this way keeps my stress levels much
more under control which has meant that I have not had any psychotic episodes nor attempted suicide for many years! So, whilst it is exhausting to constantly manage the BPD symptoms (and it is!), it is definitely worth it!