Clare Mackay is a Professor of 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 - she has now written a book about her experiences: Keep Your Hair On: Understanding urges to pick, pull and bite, published by Robinson Books in April. It describes her journey of discovery of the many areas of science that are relevant to body-focused repetitive behaviours (BFRBs), most of which haven't been applied to help understanding of these conditions. The book was launched at an event at the Story Museum in Oxford. Clare has written this blog to share three things she’s learned in three years of being a Lived Experience Scientist.
Three things I have learned in three years of being a #LivedExperienceScientist
Three years ago I published a blog on the University Department website in which I publicly revealed, for the first time, my life-long struggle with body-focused repetitive behaviours (BFRBs); in my case, hair-pulling (or trichotillomania) and nail-biting. Having lived with my disorder as a secret shame for 40 years, this was a huge moment for me. It marked the beginning of a new chapter of my career, turning my professional expertise towards an under-recognised problem that I personally experience.
The three years since ‘coming out’ have been exhilarating, challenging, stimulating, surprising, and undoubtedly the most fulfilling of my career to date. I have been able to establish multiple new collaborations and projects, set up @thetrichprof across multiple social media platforms and appeared in a range of media articles/podcasts/etc., hosted the first ever UK BFRB conference (and won funding for the second), publish a book, and linked with BFRB organisations, advocates and sufferers from around the globe.
The many things I’ve learned about picking, pulling and biting behaviours are the subject of my articles, books and most social media posts, so in this article I thought I would reflect on some other aspects of the experience of opening up about a personal struggle and merging it into an academic career.
1) Disclosure
Disclosure is defined as the act of making public something that was previously hidden. This is something that many people with chronic health conditions and/or disabilities think about a lot. Chronic conditions are often wrapped up in our identities, and thus the decision about whether or not to disclose can feel like a threat to our identity. In other words, ‘if people know this about me it will fundamentally alter how they see me’.
Looking back, it might seem like my own decision to disclose was sudden, but it was actually the culmination of a very long, slow process. For all the decades that went before, I simply didn’t feel ready or able to disclose. It might also seem like it was kind of a dam-bursting moment and that I had been planning all the things that came next. The truth is that most of the things that came next weren’t remotely on my radar - they weren’t options that my brain knew how to contemplate before I disclosed.
I reflect that my transition from a state of feeling unable to disclose to one where it felt possible was because of the enormous good fortune of security. I reached a stage of life where I felt secure at home, at work, and importantly, also in myself. I feel grateful every day for the privilege of this security, and recognise that for most of my life I didn’t feel it. I suspect most of us spend most of our lives somewhere short of this feeling, and thus the threat that disclosure represents is very real.
I hear people use the word ‘brave’ about disclosure, and I also feel huge admiration for anyone who feels able to be open about their personal struggles. However, when applied to myself it makes me feel a bit icky. I didn’t disclose when it would have put me in danger; I only disclosed when I felt safe. I only disclosed when I felt able to take on the doubters, to see past the sideways glances, to accept that some people might think less of me. These things can and do happen, and there is no going back. I can take the rough with the smooth now, but I would have found that impossible when I was younger.
So, while disclosure has improved my life immeasurably, the last thing I would want is for anyone to feel that as pressure to disclose when they don’t feel ready or able. It is a deeply personal decision, and it is completely fine to choose not to.
2) Advocacy and dissemination
Whether or not our expertise includes lived experience, medical scientists have an opportunity to become advocates for the disease or disorder that we study. As someone who has the good fortune to be in a position to speak openly about and study my own disorder, I feel this as a responsibility that I am very happy to shoulder.
Becoming an advocate is a skill, and I am only part-way up the steep learning curve. I’m still learning how to develop simple/clear messages, and figuring out how to deliver them effectively through a range of media (talks, articles, book, podcasts, interviews, etc), and to different audiences. Building a social media profile inevitably means speaking into the void for a while before an audience starts to grow and respond, and even once there is an audience, there are still times social media posts that have taken ages to craft meet with a tumbleweed response. I have learned to accept this as part of the process, not take it personally, and just keep trying.
A specific aspect of advocacy that we scientists can massively contribute to is dissemination: i.e. translating sometimes complex, nuanced, and/or technical research outputs into information that is both understandable and useful to the people we are trying to help. As a lived-experience scientist, I have much more of an appreciation that this should be a function of every medical research team. If we can’t communicate what we’re doing and why it matters to the people affected by whatever we’re investigating, then what is the point? Taking time to learn how to communicate really well to diverse audiences is a skill to be admired, and those who have achieved this are my new role models.
3) Lived experience science and PPIE
Everyone working in the space of medical research will be familiar with the requirement, now (rightly) promoted/enforced by our funders, to incorporate lived experience into the research cycle. We all write sections about public engagement and/or involvement (PPIE) in every grant application these days, but the pressures of academic jobs with their focus on academic outputs can sometimes relegate such activities, rendering them ineffective, tokenistic, and even dismissed as unimportant.
I spent 30 years studying a range of diseases/disorders that I am not personally affected by, and although my team have been praised by colleagues and funders for our PPIE, I now see the work we do through different eyes. In a PPIE session where there are one of more scientists and a small group of people with lived experience, it is very easy for science, qualifications and assumptions to become a barrier that creates a kind of ‘us and them’ dynamic. For example, the scientists are assumed to be highly educated ‘experts’ and those with lived experience are assumed to need the complexity of concepts or terminology explained to them. This is not anyone’s fault, but it is easy to see that it is not conducive to a proper collaboration of equals. The result is that the PPIE boxes are ticked, but the opportunity for science to be informed by lived experience is less than it could be.
As a newly fledged ‘lived experience scientist’ I see a particular opportunity here. My lived experience helps to break down the barrier of my job title, and I find myself having conversations with others about the experience of living with BFRBs that go way beyond what would feel possible in any PPIE room I’ve been in. I have been able to gain insights from people who would not be willing or able to volunteer for research or PPIE, and find myself feeling real anger when I come across BFRB research and practice that is clearly not informed by PPIE, and/or uses alienating or othering language. I see a gulf between the PPIE I’ve done over the years and what is possible, and I think lived experience scientists have a crucial role in bridging this.
In conclusion
When I posted my ‘coming out’ blog three years ago I thought I was simply sharing something personal that might start a conversation and help a few people feel less alone. Looking back, I realise it was the start of changing the way I design, conduct and communicate science. Science helps us see patterns and test theories, and lived experience helps us focus on the questions that matter most to the people we're trying to help. We need both. In October we’re holding the second BFRB Conference here in Oxford, and this philosophy runs through all of it. Everyone is invited, and you can find out more about it here.