The Secret Illness

The Secret Illness

The Secret Illness (SI) is a global, collaborative initiative that explores the realities of living with Obsessive Compulsive Disorder (OCD) through the creative arts. Our primary objective is to develop positive, creative outlets through which individuals living with OCD can share their experiences. Cocreation is our central ethos. By pairing participants living with OCD and creative professionals, SI develops new artistic outlets w ith people living with OCD and expands the expressive toolkit of the OCD community. Our ultimate goal is to make OCD less of a secret illness.

Since launching in August 2015, SI has been run entirely by volunteers with zero funding. We are in the process of formalising into a Community Interest Company (CIC) in order to fundraise and build on its initial success. Our headquarters is located in London, UK, but our 100+ contributors come from 14 countries and counting.

Description of the arts activity

SI is a multicomponent platform where individuals can express their own experiences of living with OCD, all housed on www.thesecretillness.com . Participants are engaged as cocreators of all products. These include:

  • “The Wall”: OCD sufferers submit a personal story about their experiences. The result has been a mosaic of more than 100 posts reflecting a spectrum of OCD experiences from all over the world.
  • Film: Poetry, writings, music and artwork created by OCD sufferers form the basis of cocreated
  • films, for example This Old Ghost ( https://thesecretillness.com/2016/05/16/thisoldghost/).
  • Creative clearinghouse: In the spirit of cocreation, potential participants are invited to submit their unique creative ideas and SI acts as a “clearinghouse” to foster collaborations within the OCD community and with creative professionals. For example, we are developing a graphic representation of a monologue about OCD that reflects the unique combination of the talents of
  • a writer/performer in the USA, an illustrator in The Philippines and an animator in the UK.
  • A podcast series and public art installations are currently under development.

Details of the project participants

Our target audience is people living with OCD. Participants around the world engage with SI primarily through social media (Facebook, Twitter) and our website (with nearly 150 comments in response to content). We have developed relationships within the vibrant OCD online community online, which has grown our participant engagement organically.

Project management

SI was founded by artists Liz Smith and Rebecca Laidler and is run by a team of 4 volunteers who collectively share the responsibilities of liaising with collaborators, developing content, and managing the website and social media. There are no costs to participants. Participant approvals are required at all stages of artistic production and participants have the option to
remove their products from public display at any time.

Evaluation methods and findings

We are monitoring the uptake and reach of SI through media coverage, online metrics, and unsolicited qualitative feedback. The appetite for SI is clear from the astonishing level of media attention it has received thus far as the been the subject of 20 news and blog articles including, The Huffington Post, The Daily Beast, Psych Central, The Independent, Mashable, Mic, Daily
Mail, TV3 Ireland, Metro, and APlus. This is significant considering that this is an entirely unfunded project with no paidfor
advertising, PR agency, or a preexisting followerbase.

In just the 3month period (March May 2016), we had over 15,000 website visitors, nearly 66,000 website views, 373,700 Twitter impressions, almost 16,000 Twitter profile visits, 418 Twitter mentions, 4,606 users engaged on Facebook, a Facebook reach of nearly 65,000 people, and 144,745 Facebook impressions. Unsolicited responses to our cocreated arts products demonstrates the profoundly positive emotional impact SI is having. For one , people living with OCD have found support and relief from discovering “they’re not alone”. We have received countless comments, like this one from our Facebook page, about the beneficial impacts of SI in participants’ lives and in the lives of others living with OCD:

“Thank you so much for this project. Words can't describe how important it is not only to me, other individuals with OCD, but also to the world in helping us end the stigma that surrounds mental illness. It makes such an isolating illness feel a little less lonely. I have always been told there are others like me, but it was hard to believe. Now I really see I'm
not alone.”

Second , our art helps to build and strengthen community among people living with OCD, which is so important given the isolating nature of the condition. One contributor reflected on how participating in SI sparked a network of positive peer support:

“Just wanted to say thanks for the opportunity to be a part of The Wall. Because of my post, I’ve both helped others and have been helped. I’ve talked with a couple of others whose experience of OCD has been remarkably similar to my own that’s
a first for me. To hear someone else relating an experience that sounds like mine has been both heartbreaking and wonderful. Thanks for making that happen for many of us.

”1 Third , SI offers people living with OCD a cathartic outlet to express their experiences in ways that they may not have otherwise have accessed. Participants benefit from a sense of agency and satisfaction from turning their difficult experiences into productive and tangible creative arts outputs. Numerous participants have told us that participating in SI and telling their stories helped them to “feel lighter.” As one participant put it, “Seeing my post on the wall really made me feel better. I just couldn’t stop smiling.” Fourth , SI is a touchstone for those who live with OCD to begin to describe and share their experiences with family and loved ones. Participants have reported to us that they have shown their Wall posts to friends and family as a way of explaining to them what the disorder is and what they are experiencing.

Supported using public funding by the Arts Council England