đź’› The imperative urgency to live đź’›: How investigating participatory research led me to reframe my own experience of surviving childhood cancer
November 23, 2023

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:

  1. being singled out because they worked slower than their peers or colleagues (despite producing high quality qualitative work)
  2. having trouble multi-tasking and prioritizing (despite being excellent instruction followers)
  3. chasing after challenges and achievements (because of an imperative urgency to live life to the fullest with no regrets)
  4. fearing being labeled as incompetent or burdensome by asking for help (related to the following point)
  5. feeling guilty, unworthy or illigitimate when needing support (because others alwyas have it worse)
  6. living with chronic anxiety and fatigue (which remain unproven because largely undocumented to this day)
  7. living up to expectations of being able to overcome anything (a counterproductive side effect of the dominant discourse around “survival”)
  8. 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.

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