Why I took part in a research study for people with BPD

I’ve been blogging for years about living with fibromyalgia, depression, anxiety and even complex post traumatic stress disorder.

When I was diagnosed with borderline personality disorder years ago, I tried, and managed to publish a few blogposts on it but I largely wrestled with it for a long time, without entirely understanding why.

On a certain level I think I’ve had a lot of shame about it and fear too. When I’d been open about it in the past, I’d experienced severe bullying and discrimination, and felt deeply misunderstood.

What is BPD?

It is difficult to sum up. BPD is a type of personality disorder experienced in some people who suffered trauma as children, but it can also affect people without traumatic experiences. People with it experience intensified emotions which are difficult to manage, severe and spontaneous changes in mood, a great fear of abandonment, disassociation, self harm and suicidal thoughts among other symptoms.

It’s been hard living with the everyday effects of these diagnoses I have, but with BPD, often I wouldn’t know what to do to make things better. It’s hard to even acknowledge it. Unlike other mental health problems featured in high profile mental health campaigns, BPD has often been excluded.

So when I heard about the opportunity to be part of a research study that could potentially contribute towards more effect treatments for this little understood condition, I knew right away that I wanted to be a part of it. Click To Tweet

I was immensely thankful that researchers were working on finding better treatments for people like me.

What is the study about?

The study is run by University College London (UCL) and aims to understand the social brain pathways and behavioural effects in healthy volunteers and people with psychological difficulties. It aims to investigate the brains of people living with personality disorders or similar traits and compare them with control participants on personality functioning, developmental history and symptoms.

“Only little is known about the neurobiology of BPD and Anti-Social personality disorders.The study wants to address this and hopefully, allow for a better understanding and develop more informed effective treatments,” explain researchers on the study.

I had a small dose of expected anxiety on the first day. It was very flexible so I went to the office after work. I met a lovely researcher, Julia, with whom I would spend several hours, engaging in various sessions over a number of days.

What it involved?

Julia explained the importance of the study and made me feel at ease and very welcomed. She always showed concern for my emotional wellbeing and said that support was available if I felt distressed following one of the in-depth interviews.

I filled in a questionnaire and had a recorded interview, which was anonymised so I couldn’t be identified in any way.

There were fun bits in different sessions too that required me to complete cognitive computer based tasks that required deep thinking.

I played a number of computerised games against other participants doing MRIs. I had the option of playing while in an MRI scanner too but I opted against it in the end because I would have struggled to remove my upper ear piercing. The computerised games against other participants had a competitive element because there were some cash incentives and they measured people’s social behaviours in the context of trust, fairness, aggression and social dominance. It was really fun, required some thinking but Julia always explained at the start of each session what was involved and she made sure I understood by going through an example with me.

My last session was an interview on my childhood, and it meant talking about some things which I’d never considered before. Some of it was distressing but I’ve honestly spoken about it so much in psychotherapy that saying the words didn’t really mean anything. Julia showed great empathy, and had at the end of the interview expressed this.

Verdict

This was my first time taking part in a research study like this and I had previously envisioned a very rigid formal structure, but this was the exact opposite.

Julia always booked days and times that were available to me and I was compensated for my time, and offered reimbursement of any travel expenses.

There were plenty of breaks and Julia always asked if I was alright, emotionally ok or tired, and said we could finish and return to it another day. There were plenty of tea and coffee breaks and some conversation outside the study structure which showed an element of care, and made me feel more a part of it, more involved…

I felt that even as one person my contribution would have an impact. And in the end Julia said so too. She thanked me profusely for my contribution.

What I got out of it

It reminded me of the times I thought I wouldn’t make it, but did. And the times I thought circumstances would win, but instead I did. It reminded me that I’m strong. I have much to give, and that no matter how hard it gets I just have to… Click To Tweet

I didn’t just give to the study.The study gave something back to me. In particular, my last in-depth interview on my childhood probed me on things I’d never properly thought about before, and as someone who has struggled immensely with understanding BPD and why I experience certain impacting symptoms, these questions helped me to understand myself a bit more and how my experiences, even the non traumatic ones, contributed to who I am and some of the things I’ve struggled with my whole life.

But Julia also asked me a lot about the things I’ve achieved despite the difficult time I’ve had, and how I’d managed these accomplishments. Apart from Julia being incredibly kind and saying that it was amazing that I’d managed to achieve what I had, I realised too that I hadn’t properly appreciated my own efforts in to surmount my difficulties. I’ve had a very shaky sense of self my whole life (another BPD characteristic) and appreciating myself and my work has never been easy. Sitting there, facing these questions headon nudged me on this.

I’m glad to say I have no regrets from taking part in this amazing study, and I can’t wait till the findings are published. If you’re interested in finding out more, you can get in touch with Julia by emailing julia.griem.14@ucl.ac.uk

Gentle hugs x