DIS is me shares the personal experiences of a large number of people with dissociative identity disorder (DID) and their loved ones. After eight months, the other specified dissociative disorder (OSDD, type 1) was included in the project. Therefore, wherever DID is written, OSDD can also be read. The project was initiated in the Netherlands, where the title of the project is a pun, as DIS is the Dutch abbreviation of DID, literally saying: DIS (This)
DID is a relatively unknown trauma related disorder which is often portrayed in the media in negative and stereotypical ways, which people with DID cannot relate to. Therefore, many people with DID feel lonely and are afraid to talk about their diagnosis because of the stigma attached to the disorder. Furthermore, there is a glaring lack of knowledge and expertise in the field of DID within the (Dutch) mental health care system, which makes it difficult for people to find the help they need.
The aim of DIS is me is to create a more realistic image of what it’s like to live with DID and to increase awareness among as many people as possible. The second, equally important, goal is for as many people with DID and their loved ones to feel seen, heard, recognized and/or less alone because of the project.
The themes of DIS is me are based on brainstorms with people with DID, their loved ones and interested parties. Subsequently based on these themes, the target group was invited to anonymously share their experiences. These were incorporated into images and texts and shared via the project channels. Lastly, the material was prepared for digital publication in Dutch as well as in English. The target group was reached via social media, the website, newsletters and flyers. Collaboration was sought with relevant professionals who have broadened the publicity of the project among their connections and/or will include the material in their educational, training, and treatment activities.
Impact and outreach
More than 120 people with DID and their loved ones, and 30 interested parties have contributed ideas about the themes. At least 70 people with DID and 35 relatives participated in the input rounds. Almost 60,000 unique people were reached via social media and the website attracted 13,000 unique visitors. 839 people subscribed to the newsletter. Almost 250 professionals pre-registered for the digital publication. In the implementation of the project activities, in addition to the small project team of about six people with DID, about 60 people (80% with DID) were involved in various ways. Through an ongoing poll, 533 people with DID and their loved ones indicated that they have experienced support from DIS is me.
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"During the treatment you learn that you are now allowed to talk about your experiences. But can you be open about your diagnosis at all, when there is so much stigma attached to it?"
When the idea was just born, Anne made a short clip about the origin of the project DIS is me (English subtitels available).