Living with Borderline Personality Disorder
This story is written by Sandra Wieman to inspire others living with Borderline Personality Disorder (BPD) to not give up and to know they are worthy. Her story is also a message to professionals to remind them to not contribute to the stigma associated with this condition. People deserve better.
One of the greatest misconceptions about people with Borderline Personality Disorder (BPD) is that they intentionally choose to behave in an attention-seeking way. If you were to go through my case notes on the edge of my hospital bed, they would read: “Patient is an x-year-old, overweight, attention-seeking woman.” If you were the next person picking up those handover notes, I doubt your first instinct would be positive.
You are not less deserving of respect just because you have a mental illness, or you may not have reached the same milestones as other people your age. This does not make you stupid or so unintelligent that you should not have access to all the information you need to make informed decisions about your care.Sandra Wieman, Borderline Personality Disorder Support Group Lead Facilitator
I come from a large extended family where selflessness and service to others is the guiding pillar of our lives. Growing up as a highly sensitive child, I did not fit into the mould that my other family members did, and this was highly problematic for my immediate family.
Growing up, I did not have a good relationship with my sibling and parents – especially with my mother. My mother was not a nurturer, and being highly sensitive, I was disciplined for expressing my needs. Feeling like a problem-child at home, and being bullied at school, I started my journey with mental health services at 11 years old.
At age 12, my family and I engaged with psychiatrists. I felt this was an opportunity to be validated, but that was not the case. Instead, they called me ‘attention-seeking’ and said if it wasn’t for me, my parents would not be divorced. From that day, I developed an eating disorder.
I engaged in self-destructive behaviours, my grades failed, and my friendships publicly broke down.
Later that same year, my mother was diagnosed with a brain tumour. Instead of validating my trauma, my family told me I had to supress my feelings because my mother had more pressing needs. I also believe there was more sympathy for my mother, as her symptoms were physical and mine were seen as invisible.
I had to be a carer and a somewhat parent to my mother, giving her the love and support I had never received. Not having my mother or another female role model to help me through puberty, I engaged in self-destructive behaviours, my grades failed, and my friendships publicly broke down. I experienced psychosis and lost all interest in the things that gave me joy.
Being told that people with Borderline Personality Disorder were timewasters
I managed to graduate high school but struggled to figure out my identity. I tried to follow the expectation of those around me to be selfless, and went on to study psychology at university. One day is particularly memorable. In my abnormal psychology class, we were discussing personality disorders. As students do, we used generalised representations in the media, which were highly discriminatory stereotypes. Rather than correct our assumptions, we were taught that the worst of all the personality disorders was BPD.
We were told that people with BPD were timewasters, manipulative, a waste of time etc. We were advised not to treat people with BPD or study BPD. As BPD was not included in any test or exam, the staff didn’t educate us on treatment and recovery. I walked away from that tutorial not only having learnt to hate myself on an emotional level, but an intellectual level, too.
I saw multiple psychiatrists and psychologist over the years, many of whom were very condescending. I was often blamed for gaining weight, despite it being a common side effect. I was also told I was not trying hard enough to exercise, despite already telling my psych I experienced auditory hallucinations. I left when I was assigned homework of timing my emotions each day, and told to draw faces in a box under each day to show how I was feeling.
On my 22nd birthday, I was diagnosed with BPD. However, I later found out this diagnosis was written in my notes from when I was 19. It was not disclosed to me because people with BPD can be falsely accused of having brain damage, given they lack skills to deal with stress, and I was not taught how to regulate my stress and emotions as a child.
After being admitted to hospital 21 times over 18 months, most of which were for five days at a time, I stopped seeing mental health professionals. I had lost trust in the psychiatric and psychological professions. I saw the same psychiatrists numerous times in the inpatient ward but was never referred to have DBT (dialectical behavioural therapy: the most evidence-based treatment).
Yet, being refused treatment only fuelled my determination to get the support I deserved. I was justifiably angry, and became stubborn in searching for what was best for me. In a last attempt, I finally found a therapist who respected me, and taught me coping skills using DBT. It was so hard, but I never blocked her number because she gave me the space I needed. It is with her guidance that I am here today.
I still go through challenges and hurdles, but that girl who went through 21 ED admissions is now a university graduate, four-years sober from mental health ED admissions, and achieving goals she otherwise thought were just fantasies.
Looking back on my life
it makes sense that I struggled to express my needs; I did everything I could to avoid going to the emergency department in crisis. My coping mechanisms were insufficient for my level of distress, and I was not taught skills in a respectful manner, so I often disengaged. Going back to the assumption at the start, I do not choose to be difficult; I do the best I can.
As people with Borderline Personality Disorder (BPD), we are very vulnerable in our relationships, especially with psychiatrists. I hate to be cliché, but the power of mental health professionals comes with a great responsibility. Many times in my story, there wasn’t proper practice and intervention. It is the action (or inaction) of medical professionals that dramatically affects individuals like me. People with BPD often lose hope in their own recovery because medical professionals only see the stigma attached to the diagnosis, rather than the person sitting in front of them. This can lead to people with BPD having little or no support system at all.
You may be wondering: ‘What can I do if the services are not there?’ The truth is that the services are not there because the decisionmakers do not believe that people with BPD can recover. There is literature out there that supports the success of psychological treatment like DBT. However, it is up to us, society, and especially the medical professions, to respectfully listen and evolve from previous learning concerning the prognosis of BPD. If the culture changes, the money for services will come.
Personally, I still go through challenges and hurdles, but that girl who went through 21 ED admissions is now a university graduate, four-years sober from mental health ED admissions, and achieving goals she otherwise thought were just fantasies.
What are my hopes and dreams? This is probably one of the main questions I get asked whenever I speak about my story or in other mental health forums. My answer is boring. I don’t hope for fancy things; rather to have the same things that the average person would want out of life: financial stability, a place to call my own, life-purpose and meaning and a community to belong to that sticks by you through the ups and downs.
Sandra Wieman works as a BPD Support Group Lead Facilitator for MIFWA and is a Lived Experience Committee Member for the Australian BPD Foundation. If you would like to connect with Sandra and find out more about her work in the Borderline Personality Disorder space, you can find her on LinkedIn.com/in/sandra-wieman.