The Secret Illness is a beautiful, illuminating art project that spreads awareness of OCD to those who don’t understand what it really is and helps those who understand it all too well feel less alone. It gives sufferers an outlet for sharing their stories without fear of stigma, because their faces are pixelated and they can decide how comfortable they feel about sharing details such as their name and location. I did one myself, and I had them use my first name and my state, but others are completely anonymous, leaving off their names as well as geographic details. Let’s learn more from the project’s founders, Becca Laidler and Liz Smith!
Do you have OCD yourself?
Becca: My mother has lived with OCD since she was young although she was not diagnosed until much later into adult life. Growing up with her routines and rituals has made me very aware of my own mental health. I do not feel like I live with OCD on a day-to-day basis, but when small rituals do find their way in during stressful periods I find it quite panic-inducing as I have seen the effect on my mum when they get out of control. I have written my own blog post on The Secret Illness wall about my relationship with OCD.
What inspired you to create the Secret Illness, and how did you make it a reality?
Becca: I feel that if my mum had been diagnosed at a younger age she would have had a much more enjoyable and happier life. Even now after diagnosis she feels embarrassed talking about how OCD affects her day-to-day life. We wanted to create a safe place where people could speak their fears without being judged and create a catalog of varying experiences so that people can see they are not alone. We are extremely lucky to have some great collaborators and volunteers who help us make this a reality.
Liz: Becca! When Becca told me about her mum’s experience I realized I had no clue about what OCD was and I wanted to explore it more. Then soon after I had an amazing conversation with someone I met quite randomly on a plane trip to New York who was diagnosed with OCD, and that just increased my interest further …we’re still in touch to this day.
Are you surprised by the response you’ve gotten to your call for submissions?
Becca: We were blown away at the response from the OCD community. I never imagined we would get as many posts as we have and from all over the world. We have also been sent so many poems, paintings, music, and other creative works based on OCD. The work is of such a high standard and breathtakingly honest.
Liz: I had no idea what to expect, but the response went way beyond anything I had imagined both in terms of the number of the responses and the quality of the responses.
Your beautiful project is fostering understanding and breaking down stigma about OCD. What do you think is the most harmful misunderstanding about the disorder?
Becca: Most people think they know what OCD is already ,which means misunderstandings have to be broken down first before people can accept the true debilitating nature of this illness. When people use OCD as a positive adjective for being neat and tidy it can be very demoralizing to those suffering in silence.
Liz: Same answer as Becca: the fact that people think they already know what it is, so when they come across it in reality it gets left undiagnosed because they don’t recognize it as the OCD they think they know about already.
How can my readers get involved with the Secret Illness?
Becca: We welcome new wall posts from anyone with a relationship to OCD. These can be as long or short and as anonymous as you like. You can email them to email@example.com. We also welcome any creative works relating to OCD and any creative individuals who may want to volunteer to help us achieve our films and installations.
Liz: In addition to what Becca has already said, we’d like to hear from people as to what topics they’d like us to cover in the podcast series or perhaps they would be up for being interviewed for the podcast. We’re also always on the lookout for creative industry professionals to get involved, so for example Mitch Grussing, who lives with OCD himself, is a composer by trade and he volunteered to compose the music for the podcast (and didn’t he do a wonderful job!). Are there any illustrators, designers, animators, video editors, sound designers/editors out there who are living with OCD who would like to collaborate and help us turn some of the wonderful poems and monologues we’ve been sent into short films? We’re also interested in talking with people involved in theater and I’m on the lookout for someone who has experience of creating physical art installations.
If you could share just one piece of advice with others who have OCD, what would it be?
Becca: You are not alone. The more you speak about how you are feeling and what you are going through the easier it is for you to receive the support or treatment you need. Many people never speak their intrusive thoughts out loud as they fear they will be judged as crazy or dangerous, but this is what OCD wants. Have a look at some of the accounts on The Wall and you will see how many people thought they were the only one feeling this way.