Clare Mackay is a Professor of Imaging Neuroscience, Associate Director of the Oxford Centre for Human Brain Activity (OHBA), and leads the Translational Neuroimaging Group. After speaking out about living with hair pulling disorder an uncontrollable urge to pull out her hair - for the first time last year, she reflects on the first ever Oxford conference on Body Focused Repetitive Behaviours.
On the 13-14th September we held the first Oxford Conference for Body Focused Repetitive Behaviours. It was co-organised with the charitable organisation BFRB UK & Ireland, and included a research symposium at the Museum of Natural History, and a community day, which we hosted here in the Department of Psychiatry.
It was an incredible two days. We were lucky with perfect September weather, so Oxford was looking its finest for the visitors who came from far and wide. In the Museum lecture hall were a number of clinicians and scientists who have studied and treated BFRBs for many years, alongside a group of scientists who are new to BFRBs, who brought expertise in areas relevant to understanding the mechanisms that drive uncontrollable urges to pick, pull and bite. The largest community was those living with BFRBs and their loved ones, some of whom are also scientists. The speakers included neuroscientists, clinicians, experimental psychologists, anthropologists, social scientists, and experts in culture and identity, several of whom shared their lived experience alongside their science.
A panel of seven experts discuss body-focused repetitive behaviours.on the stage at the conference
It was an intense day of ‘out of the box’ thinking. We observed that picking, pulling and biting behaviours are shared with other primates, and more distantly related animals. We explored the nervous system connections and chemicals that lie behind our instinctive need for ‘grooming’. We considered the variety of inputs that evolved to send sub-conscious instructions to our motor cortex, and how animals actively seek states of consciousness that exist between wake and sleep.
We heard from both the lived experience stories and research about the important roles of stigma and shame in perpetuating a state of distress for people with BFRBs, and how the experience of this is culture/race/heritage specific. We learned about the wide range of presentations and phenomenology of picking, pulling and biting behaviours, that good therapy for BFRBs incorporates more than just behavioural ‘habit reversal’ techniques, and that for some, aspects of the phenomenology overlap with ADHD symptoms. A particular highlight for me was the panel session at the end of the day in which the lived experience scientists gave reflections and answered questions.
New ideas were sparked, collaborations were born, connections were made. Our awareness raising efforts meant that we had three camera crews to make sure all of the content was captured, as well as short films made of speakers by the Mental Elf (Andre Tomlin), and content for a possible BBC documentary. And it all took place with the incredible backdrop of the Museum of Natural History, where one couldn’t help wondering what stereotyped behaviours might have been characteristics of the long extinct animals all around us.
© Clare MackaySticky notes exploring BFRBs stuck onto a wall during the Community Day
Saturday’s community day was very different, but every bit as impactful. The pace was gentler, and we heard lots of lived experience stories alongside a Q&A session about research and treatment, an art workshop, a walk or meditation session, support groups, a session on turning stigma into a super-power, and plenty of time for connecting. The day was masterfully led by Dr Bridget Bradley (Lecturer in Anthropology at the University of St Andrews) and her team at the BFRB UK & Ireland charitable organisation. The team created the most incredibly inclusive and supportive safe atmosphere for people living with BFRBs and their families. For many, this was the first time they had ever spoken to another person with a BFRB, or to another person struggling to know how best to parent around BFRBs, and the power of connection cannot be underestimated. I felt real pride that our Department (with my art on the walls!) opened its doors to this under-served community on a day that will have changed the lives of many who visited.
For me this is personal. The only comparable feeling I’ve had was organising and preparing for my wedding day. My own parents, who had no idea how to help me with my hair-pulling in an era before the internet (indeed several years before trichotillomania even entered the DSM), attended, and my husband came along in case I needed emotional support.
They joined an international crowd of around 150 people (online and in person) who watched a group of us, who are working through the crippling shame we have lived with for decades, start to erode the myths, misunderstandings and stigma that surrounds BFRBs. There were a lot more tears and hugs than I’ve ever seen at a scientific meeting!
My final reflection is not yet fully formed, but relates to the difference between public and patient involvement (PPI) and lived experience leadership. As a medical researcher and NIHR Oxford Health BRC theme leader I’ve been doing PPI for many years and like to think that my team are quite good at it – indeed we were singled out for praise by the NIHR after a BRC report a few years ago. However, this conference – with lived experience running through every element of it - felt quite different. I am still chewing over what I learned about ethnography and the value of a rich, deep understanding of the impact of a condition that comes through fieldwork, rather than through focus groups and questionnaires. I noticed that the language used by lived experience researchers was different from that used by those who study and/or treat, but don’t experience, BFRBs. I find myself wondering whether some of the stigma experienced by people with mental health disorders is still baked into the way we conduct and communicate science, despite our best efforts to the contrary. As I sat in our theme’s PPI advisory group meeting this week, I couldn’t help wondering whether there is more we can and should be doing. Can and should we encourage more of the raw and messy emotion of lived experience, and some more meaningful connections, into the equation?
So a huge thanks to everyone who organised, spoke, chaired, volunteered, sponsored, catered, filmed, and attended over the two days of our conference. Special thanks to incredible support from Hanna Smyth (public engagement officer at the Wellcome Centre for Integrative Neuroimaging) and her small army of volunteers, Bridget and the BFRB U&I team, to our sponsors: HairSolved, Habitaware and BFRB Changemakers, the Department for letting us use the space for something different, and to the OUP John Fell Fund for supporting this activity.