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Lived Experience in Research: The Unique Role of the Ervaringsdeskundige

Recently, I stumbled across an old name badge while tidying up. It was from my first-ever speaking engagement, 10 years ago. Back then, I was a parent fresh off the rollercoaster of a rare TAPS diagnosis. My twins were born prematurely, and the months that followed were filled with uncertainty and fear. At the time, I didn’t see myself as any kind of “expert.” I was a parent trying to make sense of an overwhelming situation that I had been dropped into around 12 months previously.

stephanie ernst leave the white coat

Leave The White Coat At The Door

There is a lot of symbolism and respect within the white coat for medical professionals. It’s a symbol of knowledge, of a lot of learning, and carries a lot of esteem and recognition. After all, medical professionals earn the right to wear the white coat, with years of study and field experience to establish their role as an expert.

It is not an easy role nor an easy pathway to reach the role of medical professional, and this should be respected. But along with the respect that the white coat should deserve comes sometimes an unwanted side effect – white coat syndrome.

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