Living with borderline personality disorder
Lucie Langford shares her experiences as a patient with this condition
Lucie Langford, from Ontario, Canada, is an aspiring researcher/clinician. Now 25, she was diagnosed with borderline personality disorder (BPD) at the age of 17. Lucie recently spent just over a year working at the Children’s Hospital of Eastern Ontario as a programme facilitator for young people with mental illness.
Can you talk us through your journey towards a diagnosis?
I started self harming when I was 13; in retrospect, there were signs that I was experiencing mental health difficulties from the age of six. Initially, I was diagnosed with depression because borderline personality disorder (BPD) is not usually diagnosed until early adulthood. As a teenager, I was in and out of psychiatric institutions and was finally diagnosed with BPD at the age of 17.
At the time, it felt like [BPD] was a big secret being kept from me, as my doctors and parents knew the diagnosis before me and this added to my apprehension about it. Talking to my parents now, they admit that many psychologists had hunches, but they didn’t formalise the diagnosis because I was too young. I was apprehensive partly because I didn’t understand the diagnosis and partly because I would not be able to access any services for BPD for some time, as in Canada they are only available for people over 18 years old.
What is it like to have BPD?
It is something that you feel internally but it does not necessarily have external symptoms. My therapist refers to it as “apparent competence”—because you try to hold things together in public but are really struggling. I still struggle with self harming at times, but even that I keep quite private. I am participating in a dialectical behavioural therapy programme, which is helping me to manage my symptoms, but I have to remember to use the skills that I have learnt and that can be quite challenging during emotional times.
How did your diagnosis make you feel?
I experienced a sinking feeling because I thought BPD was a lifelong disorder. Depression and anxiety had seemed more like a temporary illness. My diagnosis has helped to improve my relationship with my parents, because it was tumultuous. My dad went on a skills group course for family members and caregivers of patients with BPD, and this has helped him to better understand how to support me.
What stigma have you faced as a result of your condition?
I think that BPD is widely misunderstood by medical professionals and the public. A large part of this is due to the name—I think “emotional dysregulation” is a better term. Even my GP once said that there was no hope of recovery, which felt very stigmatising.
At times, the disorder has caused me to behave in ways that I wouldn’t normally, so I was given the label of “the bad kid” growing up. One example would be getting angry—there were many instances in the hospital when I would have to be restrained, which is something people who know me today might think is out of character.
I was hospitalised a lot and this made me feel that I lacked control, as I did not have much freedom. The attitudes of physicians were negative because they had preconceived notions of what I would be like on the basis of my diagnosis. The way they interacted with me would lead me to become antagonistic—fulfilling what the diagnosis was predicting about me.
No differential was made between how I was on a normal day and how I was when I was having a bad episode. I also found it hard to maintain relationships with friends, because I was in and out of psychiatric institutions throughout my teenage years and they were not allowed to visit. Even my parents had certain visiting hours, which made things difficult.
What positive things have come from your experience?
I want to train as a physician so that I can help other people in my position. I have always been interested in psychiatry because I wanted to understand myself better.
I would like to continue my work as an advocate for young people trying to gain access to the healthcare they need. I was on a grant review for the Canadian Institutes of Health Research “transformational research in adolescent mental health” in 2013-14. My role was to review the proposals as a young person with BPD and to give feedback to the clinicians and researchers.
From 2014-15, I was also part of the International Consortium for Health Outcomes Management (ICHOM) working group that developed the standard set of outcomes for depression and anxiety.
What are the most important outcomes for a patient with BPD?
Being able to engage in education and employment and to have a good quality of life. Patients usually have the same life goals as they did before their diagnosis. I want to go to university and get a normal job.
What would you like healthcare professionals to know?
The most important thing is to see the patient as a person. When I meet people they say I am smart and articulate, and they are surprised that someone with BPD can be like that.
Also, do not put the onus of the patient’s recovery solely on themselves. Instead, say that we will get through this together. Having someone who will make sure that you get to the other side helps you to believe that you will get better.
Borderline personality disorder (BPD) explained by Mark Salter, adult general psychiatrist, East London Foundation Trust, UK
What is BPD?
BPD, also known as emotionally unstable personality disorder, is a recognised pattern of emotional and behavioural problems that usually becomes apparent during teenage years. People with BPD have difficulty recognising and regulating their emotions which disrupts the way they react to events, form relationships, and learn from life. They experience anger, mistrust, boredom, and a sense of emptiness.
How common is it?
UK prevalence is around 1% of the general population. People with BPD often have a family history of alcohol misuse, personality disorder, and depression.
How does it present?
Individuals usually present for the first time in crisis, with intense agitation, self harm, and a fragmented state of mind.
How is it related to self harm?
Self harm is common—typically cutting and intoxication. Such behaviours more often signal distress than a wish to die. Nevertheless, completed suicide is more than 10 times greater in people with BPD than in the general population.
How is BPD treated?
BPD is treatable. Drugs can help with depression and anxiety, but the key ingredients of treatment are time and a stable relationship with healthcare professionals who are capable of encouraging patients to self reflect. Mentalisation based therapies and dialectical behaviour therapy can be provided individually and in groups. Collaboration between all the patient’s carers will aid treatment. Progress is usually slow with setbacks. Social support and a willingness to learn from crises indicate a good prognosis.
International Consortium for Health Outcomes Measurement (ICHOM), Boston, USA, firstname.lastname@example.org
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.