What’s an Expert by Experience?

Expert by experience is a fairly new term to be adopted by the field of mental health. An expert by experience is someone who brings their knowledge and expertise to a subject, which they have gained from first hand lived experience. In its endeavour to respond to the ‘mental health’ needs of people in Low to middle income countries, the World Health Organisation and the Global Mental Health movement are looking for ways to involve people with experience of ‘psycho-social disabilities’ in the formation, development and delivery of services, though in reality the concept has been embraced sporadically and somewhat tokenistically in this setting. Service user participation is so important in the challenge to bring balance to what has been a bio-medically dominant response to the approach of human suffering. We need to be included and involved in the shaping of our societies and the systems that all of us need to safely underpin our lives.  Humans are great at co-creating when the environment encourages and facilitates the process. Lived experience is valid and valuable, in all aspects of health and well-being, and that value is at last beginning to be recognised.

Service user involvement is not new. Lots of third sector organisations that I have been involved with have worked side by side with people who find the service helpful and go on to contribute to the development and delivery of projects. It keeps things real and stops theoretical perspectives from taking over. Many grassroots organisations have been started by someone identifying a need, often when they can’t find the support they require, who then go about setting up and providing that service for others who also find themselves experiencing a lack of support or services. The benefit of this approach is that a service set up by someone who has had an experience, such as depression, anxiety, childhood sexual abuse, etc, is that the expert by experience often has an understanding and often a natural empathy for those who may have had similar experiences. This understanding and empathy often brings a level of awareness and sensitivity which helps to inform and structure the organisation to provide the type of support, or environment that others may be seeking. 

In this type of bottom-up approach there is normally a level of connection built into the resource that can be noticeably absent from theory driven or top-down services. Top down services commonly descend from a hierarchy with biomedicine and psychiatry positioned at the very top. I’ll talk in more detail about this faulty system in another blog, but suffice to say, over the years that I’ve worked with anxiety, this model has made little sense to me. The theory around anxiety ‘disorders’ doesn’t match the experience that most people have when anxious. I’ve never yet met someone with a ‘broken’ brain, and havn’t encountered a shred of evidence to support the hypothesis that anxiety is an ‘illness or disease’ of the brain. My position on anxiety is upheld by the science of straightforward human biology. Anxiety is in fact the fight or flight response in action, in response to a threat, real or perceived, or a response to overwhelming circumstances and too much pressure or stress. It’s a myth that anxiety is about being irrationally afraid, fear can be a component, but an activated system that is out of kilter with the situation is a more accurate description. Anxiety is a state which it is easy to find ourselves stuck in due to the supply and demand nature, and the function of the internal communication loop between ourselves and the autonomic nervous system rather than a matter of psychological dysfunction.

Out of the Loop is a bottom-up, expert by experience led resource. It was originally developed in response to my own anxiety in the late 1990s. Everything you will learn on this site was originally derived from my own experience and the path that it led me down, which was away from a formal career in Psychology, and towards a ‘shared knowledge is power’ approach across many sectors. In early 2020, exactly a year ago, I was in the process of having the illustrations developed for a book version of this website. I had also just begun delivering the Anxiety Social, a café based informal drop in for those experiencing anxiety, but then Covid happened, and it seemed to make sense to make it an online resource instead. The beauty of a web based resource is that it will allow the content to grow over time and I hope to include any of you who find the resource useful, in its future expansion and development.  

I’m very conscious as someone who is researching Global Mental Health that this approach is not about looking at ‘causes’ of anxiety, and instead focuses on what to do if you find yourself anxious long after the cause has receded. It’s important to say that this is in no way about ignoring the social and structural causes of stress in our lives, which are real and to be taken seriously. I have been asked many times to work with organisations, such as in schools with teachers, to help them to manage their rising stress levels. I always politely decline this, with the explanation that I don’t believe we should be inoculated against systems that are not set up to allow human beings to go to work without feeling constant strain and pressure. Going to work to exchange your time and skills for money and a sense of satisfaction if a fair transaction. Going to work to be treated as though you have an endless supply of energy, resilience, and tolerance for non-human centred systems is not. (in my opinion). So, this resource, is for those who have found that long after the original stressor/trigger has become history, anxiety is still unnecessarily present. If your anxiety response is highly reactive to even the most benign elements of life, despite you being in an emotionally and physically safe situation, then this process may be useful for you.

I still rail against the idea that those of us who have horrible experiences and injustices end up being the one’s having to take responsibility for regaining our equilibrium, but in the absence of a time machine that would take you back to pre-trauma times, I offer you what I’ve learned over the past 20 years of research and work at the coal face. Anxiety isn’t about your personality, nor a weakness, neuroticism or an inability to cope. It’s the experience of an autonomic nervous system response that stays switched on long after it’s needed, until we learn how to convey to it that it can safely switch back off again. It takes a bit of knowledge, a bit of time, and a bit of effort, but not as much effort as it feels to deal with anxiety on a daily basis, and that to me is worth it, and I hope it is for you too.

A Caring Word of Caution: If you are in a situation where your natural fight or flight response is activated because you don’t feel physically or emotionally safe, it’s important to seek help to either deal with or remove yourself from those circumstances. You are important, feeling safe is important and a vital part of our ability to function. Prioritise taking care of yourself always.