This post is written by Fiona Scott, a PhD student at Sussex Drug Discovery Centre. Fiona is in the somewhat rare position of being a scientific researcher that also has first-hand experience of being a patient. Here, she gives an insight into how sharing her experiences as a patient can break down barriers with the public when talking about her work. Fiona also sheds light on the potential mental health implications that come with the weight of sharing such personal experiences, something that is often glossed over when scientists are encouraged to share parts of their own lives in the pursuit of knowledge exchange.
Find out more about Fiona and her work on her website, Twitter and Instagram pages.
Picture the scene. It’s pouring rain and I’ve missed my last bus but manage to hail a taxi down after a few minutes. The usual small talk ensues, and then:
Taxi driver: What do you do for work?
Me: I work in cancer drug development.
Taxi driver: Hasn’t that been cured already? I hear they are hiding it.
While this doesn’t happen every day, it’s frequent enough for me to have lost count of the conversations I’ve had with friends, family and strangers about whether cancer has been cured or not. Usually, I explain that there are thousands of people working in cancer research in academia, industry and the charity sector. It would be impossible to keep everyone to oath if we were hiding ‘the cure’. Plus, the word ‘cancer’ defines a complex class of diseases made up of hundreds of sub-types; therefore unlikely to be treatable with a single cure.
If they’re still unconvinced, I find myself playing the patient card.
Me: I had thyroid cancer a few years ago. It’s a type of cancer that’s generally very treatable so we’ve made some progress.
The conversation inevitably takes a turn at this point. The previously defensive attitude morphs into a sympathetic head tilt or an apology. Reluctant as I am to get so personal, it does seem to help me break down a perceived barrier with whoever I’m talking to. Does that mean experiencing the disease makes me seem more legitimate than my PhD and the years of study that went into it?
Do I enjoy sharing my cancer experience? Not really. It happened a few years ago, ironically before starting my PhD, and was a relatively mild ordeal because of the type of cancer it was. Though the experience was a big part of my life, it’s not something that I allow to define me.
That said, it comes in useful for convincing some people that the vast majority of researchers are not in their line of work for the money or fame. Somehow my experiences add credibility to the notion that most researchers want to help people recover, and are willing to undergo low-paid PhD studentships and precarious fixed-term contracts to do so.
It gets a bit much sometimes. A friend once unintentionally grilled me on cancer for the entirety of a half hour train journey. I’ve taken part in online chats with students where I was asked dozens of times why some people recover and others don’t. The overwhelming feelings of despair after such conversations are what I call ‘cancer fatigue’.
Sharing my past can feel like I’m taking the weight of the research community on my shoulders, and I’ve learned that it isn’t healthy for me to get so personal all the time. Challenging opinions is important, but generally I try to steer clear of such heavy topics, particularly with someone I’ve just met.
With experience, I’ve learned how to navigate these conversations more easily; I focus on ‘how’ questions which are easier for my scientist brain to answer, rather than the trickier ‘why’ questions. Through talking with others, I have found useful phrases for changing the topic if I’m starting to feel cancer fatigue creep in. Nobody objects if I say, “I’ve enjoyed talking about my work with you, but I find if I do it for too long, it can get me down. Can we please change the subject?”
If I do share my cancer experience, I frame it in a succinct and positive way so that we don’t dwell on it. I’ve also learned I get far fewer cancer questions if I’m more general about my line of work which still leads to interesting conversations. When I say I’m working on new medicines rather than new cancer medicines, I get asked “Why haven’t we cured cancer?” far less often. Obviously, if I’m asked about the detail of my work, I’ll share specifics, but in small talk scenarios, I’ve definitely found this to be an effective way of protecting myself from cancer fatigue.
I think sharing our personal motivations for working in a particular field really helps us to connect with the people we speak to about our science. However, I’ve learned that we shouldn’t overshare personal information to back up our professional interest and insight at the expense of our mental health.
When talking about cancer, I find it best to keep it vague and keep it short. Focus on positive stories to counteract the unfortunate reality that many cancers are still untreatable. Don’t be afraid of walking away or steering conversations elsewhere in order to maintain healthy boundaries. Researchers are humans, not robots.