Years ago, Lindsey brought up how hard it is to read about their own experiences in the stigmatizing and pathologizing language that the DSM provides. Lindsey experiences ‘dermatillomania’ or ‘skin picking’, and there is very little kind or dignifying information available about this experience. We wondered if we could create something better. It took a while to get this ball rolling, but here we are, and we want to invite anyone with shared experience of this or ‘trichotillomania’ / ‘hair pulling’ to join us in this project.
On June 24, 2023, we will be hosting an initial community conversation for people who experience skin picking / ‘dermatillomania’ or hair pulling / ‘trichotillomania’ and who want to talk about these experiences in ways that name and challenge stigma and that expand beyond the pathologizing and limited definitions of the DSM.
The reason we want to host this conversation and create a collective document that takes this conversation forward is that the stigma associated with these experiences is intense, and the language used to describe people who have these experiences is often demeaning and pathologizing. There is little meaningful awareness about these experiences, and because skin and hair are often so visible, people can face judgement and intrusive questions from many directions. These experiences can also be difficult to discuss because of the (valid!) fear of judgement and the shame that can accumulate after years of experiencing the effects of stigma and lack of awareness.
We hope that this conversation will create a space to share community stories in an honouring and dignifying way – to reclaim some ‘storytelling rights’ from the overwhelming power of silence and stigma. That this conversation will be an act of resistance and care.
“Resistance is an everyday act. The work of excavating every tiny artifact of the oppressor that lives in you. Your call to be a balm to every self-inflicted wound is the way movements are birthed.”
Sonya Renee Taylor (from the TED Talk)
We also hope that this conversation will result in a collective document that can be shared, that can be a balm that comes from the insider knowledge of community members who know that this experience is more than just pathology, and who know how to respond in skillful and meaningful ways.
This conversation will be facilitated by myself and Lindsey. We invite any community members who have lived experience to join us. The conversation will be recorded and transcribed, but the recording and transcription will not be shared publicly. Participants will be able to choose how (and if) their contributions are included in the final collective document, and how (and if) they are credited by name, by pseudonym, or anonymously.
‘Troubling the boundary between the self and the world’ community conversation
June 24, 2023
1-2:30 pm mountain time
Register for zoom link – https://us02web.zoom.us/meeting/register/tZwvce-vpz8oH9DKXgLzfsi4e5UW1kqwuwoF
Additional reading
We loved Allison Grodinsky’s MSW thesis, “A Journey to Authenticity: An Autoethnography of Compulsive Excoriation (Skin Picking) Disorder“
The idea of ‘storytelling rights’ is central to this work, and comes from the work of the Dulwich Centre. You can read about it here.
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