The theme for this year’s World Mental Health Day is Lived experiences heard: real voices, real change, highlighting the importance of listening to and learning from people with lived experience of mental health challenges.
This year, we had the pleasure of interviewing Sarah Rodgerson, Operations and Delivery Manager at XR Therapeutics about her experiences of living with obsessive compulsive disorder (OCD).
Why is it important to involve people with lived experience when developing healthcare innovations?
As someone who lives with OCD, it’s crucial we strive to continuously listen and learn from individuals with lived experiences. While data can give us some insight into what is happening, lived experience stories can explain the ‘why’, and more importantly what it actually feels like on a daily basis – which I think is the most insightful part to creating any solution.
Can you share an example of something about OCD that you think data or statistics alone can’t capture?
For me, it would be helping others understand the physical symptoms as well as the mental ones. As a very hyper-vigilant and self-aware person, during cycles of really intense rituals/compulsions and thoughts, I always experience the racing heart, shaking, tension, feeling sick or like I’m going to pass out.
These physical symptoms can be just as exhausting as the mental ones, and makes the distress feel even more real and only helps to encourage my OCD thoughts, as it makes me think there’s a reason my body is acting this way.
Data alone can’t capture these kinds of insight, as everyone’s symptoms present differently, and I think we need to consider this alongside quantitative data to ensure the treatment provided helps as a whole, rather than focusing only on individual aspects of their condition.
How has your own experience of OCD influenced the way you approach innovation and problem-solving in MedTech?
Through my own journey with OCD, I realised that a lot of people experience moral OCD, which means they often find speaking up or speaking in groups really difficult because their brain might think, “What if I misrepresent the truth and lie to them?” or “A truly good person would never have said that.” This can be a barrier to getting that valuable insight from people.
I think this has shaped how I approach innovation, because I always want to go into it by creating a safe, structured environment that removes the pressure of saying ‘perfect’ things, or by giving people a few days to think about what they would like to share so they don’t feel pressured in the moment.
If you could change one thing about how society or healthcare understands OCD, what would it be?
How people with OCD are constantly living in a state of fight or flight. Intrusive, distressing thoughts and rituals can be exhausting, and they aren’t always the stereotypical cleaning or cleanliness-related behaviours often portrayed in the media.
We need to work to continue to work together to reduce the shame and stigma that prevent people from seeking help, and improve the diagnosis of the less visible forms of OCD by raising awareness of presentations such as moral OCD, contamination OCD, symmetry OCD and harm OCD.
What would meaningful change look like for someone living with OCD and not just in terms of treatment, but in their everyday life?
From my own experience, I’ve always said that OCD has been a time thief, and I often think about all the things I’ve missed out on because of the fear and anxiety it has caused me.
For me, meaningful change would be about much more than reducing symptoms. It would be about reclaiming the time spent dealing with those thoughts and rituals to be fully present and enjoy myself again.
I know that my OCD will never fully go away, but being able to manage it when it does show up is something I’m working towards.
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