Borderline Personality Disorder: A Lived Experience Perspective
In this honest and open account, Grainne* gives a first person look into her experiences of being diagnosed with Borderline Personality Disorder and her road to recovery and living well, through treatment and support from her mental health team, friends and family.
This article is part of our information series marking Borderline Personality Disorder Awareness Month. You can read more in the series, which includes information from Psychiatrists on diagnosis, treatment and management of BPD, below this post.
*name changed to protect privacy
Coming up on two years ago, I was in the worst place with my mental health I had ever been in. I had just turned 26, I was admitted to St Patrick’s psychiatric hospital in Dublin, and I was diagnosed with borderline personality disorder [BPD], and obsessive-compulsive personality disorder.
I can’t fully describe the sense of despair I felt when I was diagnosed. That night in my hospital bed, I started reading online about what this might mean for me. While some of what I read was helpful, I will not forget the posts on public forums that I stumbled upon which described people with BPD as being like rabid dogs, like rats in cages that pull everyone around them down with them. I read on reputable websites that personality disorders are incurable (a statement less cut-and-dried than it appears), and that 10% of people with BPD kill themselves (an accurate, if not encouraging statistic). And, as someone had unhelpfully posted, why wouldn’t they? – it is a disorder rightly associated with a huge amount of emotional pain.
When I went into hospital I was more unwell than I can imagine being now. It is only now that I’m beginning to feel a small sense of compassion towards the person I was. I was terrified, unable to look after myself or see myself as worth looking after. I could not see any future for myself that was worth having. I was afraid of, and didn’t trust my medical team. My boyfriend at the time walked me and my haphazardly packed suitcase to the front door of the hospital, and we cried as we said our goodbyes – because of COVID, he couldn’t come in with me. In retrospect, I can see that I had struggled with the symptoms of both borderline and obsessive compulsive personality disorder for a long time before things eventually came crashing to a halt. There are one or two photos of myself from back when I went into hospital first – I was gaunt, bruised and honestly dead behind the eyes.
I was so lucky that I got the help I needed then. I had a therapist who would have me call someone I knew to walk me home after sessions when I was too distressed to take care of myself. I had a conscientious GP who knew me, and who made the referral for inpatient treatment, convincing me over several days and phone calls that she “would just like me to have an assessment to see if it would help”. And when I got into hospital, even though I couldn’t trust them at first, I had a wonderful multi-disciplinary team and psychiatrist without whom I likely would not be here and writing this blog post.
Recovery has been harder than anything else I’ve done. One of the most important things I learned in my recovery was to try not to think a month ahead, a year ahead, or even a week ahead, at first. Don’t try to think about being the best and most recovered version of yourself that you can be. It is far too much and seems too out of reach. I took things a day at a time, sometimes an hour at a time, or twenty minutes at a time.
The first goals I had for myself in hospital were to do just three things every day – take my medication, brush my teeth, and get dressed. Even that felt nearly impossible, and I was in a hospital where someone would always make sure you got and took your medication. It took a while before I could progress to things like showering more than once a week. It is one step at a time, but at the beginning it feels like you’re stepping on two broken legs. At the beginning, those steps are the hardest, but you just have to try to keep walking.
It took two and a half months in hospital and then moving out of my city flat and back to my family home. It took a further four outpatient programmes, including one on Dialectical Behaviour Therapy (DBT). It has taken the support of a fantastic multi-disciplinary team, several understanding psychiatric nurses, an excellent DBT psychologist and team, and now a wonderful private schema therapist psychologist, to get me to this point. I am nearly one year into schema therapy which has made a profound difference in how I see myself and things around me. Trying to feel better and keep going has been a decision I have tried to make every day. Even on the worst days and weeks, even when things have gone wrong or badly, I have always had to come back to making that decision and using all the help and tools I’ve learned. DBT and schema therapy have been life-changing for me.
As a country I believe we have improved in talking about mental health over the last few years, but we still have so much work to do both in terms of the conversation and the funding. So much of the narrative around mental health is centred on the importance of talking and having a chat, which has its place and is very important – but we still rarely talk about long term mental health difficulties, personality disorders, in-patient hospital stays and mental illnesses which need long term, ongoing treatment.
This is in spite of the fact that BPD has lifetime suicide rates of around 10%, more than for people with clinical depression (which I have also been diagnosed with!), and affects roughly one in one hundred people. I had never heard of DBT or schema therapy before I was diagnosed, and all I knew about borderline personality disorder was what I had seen in Girl, Interrupted. Not everything can be cured with a cup of tea, going for a walk, or even a few counselling sessions, and by avoiding the topic of serious mental health difficulties we continue to compound the stigma experienced by the people who live with them. Telling people with BPD to “just talk” will not help unless they are talking to the right professional. I spent years in and out of therapy before I was diagnosed, wondering what was so wrong with me that no type of therapy seemed to stick and help me long term.
I am doing so much better than I was before I went into hospital – and possibly even better than I have ever been since I was first diagnosed with depression when I was 13. But I still can’t put my full name to this blog post, because when I apply for jobs my diagnosis will likely be held against me or thought of as a weakness. Outside of my immediate family and a few lifelong friends, no one knows I spent two and a half months in a psychiatric hospital. When I first moved home, I would hide in my bedroom when extended family visited because as far as they knew I was still living and working in the city. For a year and a half after I got out of hospital, if I met someone I knew, I would tell them work was going fine – even though I hadn’t been there for more than a year. Stigma, including self-stigma is a real issue. It has no overnight fixes.
I was so lucky to be able to go to St Patrick’s thanks to private health insurance but so many don’t have that privilege. Aware, the Samaritans and other NGOs run vital and important helplines, but for people with personality disorders things can’t be fully solved by these free emergency lines and they deserve to get the help they need from the HSE. Private therapy with my psychologist has been vital for me but it can be prohibitively expensive for many. To get the help I needed, I have foregone a considerable amount of savings which were to go towards a house deposit someday – not to mention the loss of nearly two years’ worth of earnings, a considerable amount of time spent on outpatient therapy programmes and my own research, and for the last two years at least, I have also missed out on adult life away from my family home.
But this has a happy ending. I have done a lot of therapy. I am back at work. I have a boyfriend whom I adore, and who understands. I have hobbies, interests, and things I enjoy. I plan for next week, next month, next year. I am more self-aware, more present, and more enjoyable to be around. I hope to move out in the coming months. I can’t emphasise enough how different things look to me now. Things are so wonderfully and exquisitely normal.
Of course there are days that are more difficult, but they are similar to how they are for everybody; difficult days, not months or years. I’m not fully recovered yet, and I still have work to do. I still experience intense emotions, but I can manage them healthily. I’m the same person I always was but it is truly like the back-end coding of my brain has been rewritten – the whole programme is running more smoothly, even in comparison to the times before I got diagnosed when I thought I was doing well. My boyfriend and I joke about me writing a book about my experience with BPD and calling it Funny Girl, Interrupted – because there’s an element of Winona Ryder’s Susanna in it, but now there’s also Barbra Streisand’s Fannie Brice, making jokes and trying to sing and roller skate at the same time.
It is so important that we talk about these issues which are so difficult for those who experience them and that we adequately fund public mental health treatment which is so sorely lacking here, so that it isn’t just the lucky and comfortably-off minority who get to access timely help.
Personality disorders are among the most misunderstood and stigmatised mental health difficulties there are. I used to hate reading things that said “If I can do it, anybody can” but it is true, and contrary to the posts I read online when I was first diagnosed, recovery is possible when you’ve got the right supports around you. It might feel like walking on broken legs, but if you can access the help, you just have to keep making the choice, for as long as it takes. I have started to see and experience life as it really is. It’s not easy, but I can certainly promise it’s worth it.
Published under a pseudonym with kind permission of the author
If you want to find out about mental health supports you can call the HSE YourMentalHealth information line (Freephone: 1800 111 888) or talk to your GP or current mental health provider.
If you need to speak to someone about how you are feeling right now you can call the Samaritans on Freephone: 116 123
Pieta House (Freephone: 1800 247 247) also provide support for people with suicidal thoughts or self-harm.
For urgent help you could contact your out-of-hours GP service or, in an emergency, contact 999 or 112, or attend a hospital Emergency Department.
Borderline Personality Disorder Awareness Month 2022 – Blog Series:
What is Borderline Personality Disorder – by Dr Paul Matthews
Addressing 6 Myths Around Borderline Personality Disorder – Dr Molly Bredin
Treatments for Borderline Personality Disorder – by Dr Paul Matthews
Dialectical Behaviour Therapy: An Overview – by Dr Navroop Johnson
Development of Treatment for Personality Disorder in Adult Mental Health Services – Position Paper by the CPsychI Personality Disorders Special Interest Group
Treatment for BPD – HSE Ireland
Information on Dialectical Behaviour Therapy – HSE Ireland
Symptoms, Causes, Treatment and Diagnosis – HSE Ireland, General Information on Personality Disorder
PersonalityDisorder.org.uk – Developed by the UK Department of Health.
About Borderline Personality Disorder – Mind, Uk-based mental health charity
Personality disorders: symptoms, treatments, self-care – resource by MindWise, mental health charity in Northern Ireland
Borderline Personality Disorder can be treated and achieve ‘good response – Article by Priscilla Lynch
The Wrong Kind of Mad podcast – Hollie Berrigan and Keir Harding talk about issues associated with “personality disorder”.