Over the last months, I actively contributed to several in-person events. Some were related to participatory research to bridge science & society (see here, here, here, here , here & here)
Others related to post-doctoral career development and entrepreneurship (here, here & here).
The whole time, I dutifully rode the anxiety – performance – exhaustion rollercoaster.
This is business as usual for me. I’ve been riding this rollercoaster for most of my life, and as a result I’ve developed elaborate and effective coping mecanisms to function in codified group settings.
I call these “performances”.
Despite how well a performance goes (and it goes well 99% of the time), it always generates debilitating fatigue, which then gives way to feelings of inadequacy that I have to vanquish in time to be ready for the next performance. And the cycle just goes on.
I’ve been functionning this way for so long that I came to believe the rollercoaster was innate to my personality.
This changed after I attended a conference organized by a French support group for adult survivors of childhood cancer: Les Aguerris.
During the conference, I was floored by the amount of experiences other survivors shared about:
- being singled out because they worked slower than their peers or colleagues (despite producing high quality qualitative work)
- having trouble multi-tasking and prioritizing (despite being excellent instruction followers)
- chasing after challenges and achievements (because of an imperative urgency to live life to the fullest with no regrets)
- fearing being labeled as incompetent or burdensome by asking for help (related to the following point)
- feeling guilty, unworthy or illigitimate when needing support (because others alwyas have it worse)
- living with chronic anxiety and fatigue (which remain unproven because largely undocumented to this day)
- living up to expectations of being able to overcome anything (a counterproductive side effect of the dominant discourse around “survival”)
- developing post-traumatic fear of illness or medical settings (compounded by covid-related experiences)
These are just some of many psychological and physiological aspects that came up during the day’s share-out sessions and that I could relate to my own personal experience.
By allowing my data to be entered into a patient health database during a long-term care consultation, I’m hoping my experiences will one day contribute to reframe these behaviors so they can be recognized for what they are: the long-term side effects of childhood cancer treatments currently being documented and investigated by medical research teams and patient groups.