Nothing inspires me more than when people who have suffered make it their mission to help others, and it’s even better when they do it with as much joy and creativity as today’s guests have. Cassie and Darcy are at the helm of A Penny for Your Intrusive Thoughts, an outlet for people with intrusive thoughts they may otherwise be too ashamed to talk about. Reading about others’ experiences with obsessive-compulsive disorder (OCD) is a powerful way to heal. Thank you, Cassie and Darcy, for everything you do, and for your courage!
Tell us about A Penny for Your Intrusive Thoughts. Why did you create it?
Cassie: My inspiration for Penny came in part from a session I attended at the 2017 International OCD Foundation (IOCDF) Conference on taboo intrusive thoughts. Audience members wrote anonymous questions on pieces of paper that the presenters collected. This was the first session I attended that had this option. I was struck by the difference between the questions people asked anonymously and those they were willing to raise their hands and ask publicly. Through the anonymous questions, I learned about a large variety of taboo intrusive thought types, some of which I had even personally experienced, that I originally had no idea were OCD. In more public spaces at the conference, these taboo thoughts rarely came up. As I became more involved in the OCD community, I noticed that only a few advocates were comfortable discussing these taboo themes publicly.
A year after that conference someone at my high school created an Instagram account that displayed anonymous “confessions” from students. These confessions ranged from secret crushes to unsatisfactory test scores and feelings of inferiority to talk of mental illness. At the time the Instagram came out, I was feeling alone in my mental health struggles, because people at my high school didn’t generally talk about mental health. I was therefore surprised when mental health confessions dominated the Instagram account. My school, which prohibited anonymity in most forms, shut down the Instagram account within a few days. However, in those few days it had already made an impact on both me and the student body as a whole. After years of hearing anonymity criticized as something cowards hide behind, I realized the true power of anonymity to do good. Reflecting on the taboo intrusive thoughts panel at the conference and the Instagram account, I wondered if I could create something similar for people with OCD, to expand conversations on OCD to include the topics that so few people were comfortable speaking about publicly.
A Penny for Your Intrusive Thoughts started as a Facebook page in 2018 (@APenny4YourIntrusiveThoughts) and has since expanded to Twitter (@OCDthoughtsanon) and Instagram (@apenny4yourintrusivethoughts). In 2019 we came out with the website. A Penny for Your Intrusive Thoughts shares people’s anonymously submitted intrusive thoughts with the goal of helping people with OCD see that they are not alone. Our website links to an anonymous Google Form where people can submit intrusive thoughts for us to post across our platforms.
I love your mini poster! How do you envision people using it? It seems like a great resource for schools.
Darcy: Thank you! Our mini poster was inspired by the amazing OCD therapists Cassie and I are lucky to know (both in person and online). Often people are afraid to disclose the specifics of their intrusive thoughts to their therapists, so we envisioned the poster as something therapists can use to start that conversation. By hanging up the poster in their office, sharing with a client, or on social media, therapists are helping the people they work with feel less alone. If you would like your own poster, the image is on our website, and feel free to email us at firstname.lastname@example.org for the free color or black and white PDF.
Exposure and response prevention (ERP) therapy is the gold standard treatment for OCD. Your most recent initiative, #ThankYouERP, gives people a chance to share how the treatment helped them. What has the response been like?
Darcy: Cassie and I have been blown away by the heartwarming responses we’ve received. You can participate in the initiative by posting a picture of yourself doing something that OCD prevented you from doing before receiving ERP. In the caption tell the story of your ERP journey and don’t forget to tag us and use #ThankYouERP. Reading people’s stories reminds us why we chose to start A Penny for Your Intrusive Thoughts and why we chose to be vulnerable about our own experiences with OCD. Our main motivation behind the campaign was to let people who might just be beginning mental health advocacy share their stories and to promote the gold standard treatment for OCD. While OCD comes up in the media from time to time (think Howie Mandel or characters in TV shows like Monica on Friends or Emma on Glee), often the message that there is treatment that works is left out. We feel there is no better way to empower people to seek help than to provide them with stories from people who were in similar situations.
You mentioned above that submissions to A Penny for Your Intrusive Thoughts are anonymous. Can you share a little more about why you think it’s important that people are able to share their stories without using their full names?
Cassie: Anonymity has been central to the mission of A Penny for Your Intrusive Thoughts from the beginning. Not only are thought submissions anonymous, but we even remained anonymous ourselves for the first two years of the project.
After experiencing the power of anonymity through attending the taboo intrusive thoughts panel and reading the confessions Instagram, I realized how helpful anonymity could be to give a voice to people who are not often heard. I have heard the argument from members of the mental health community that the only way to break the stigma around mental health is to advocate publicly using one’s real name and face. Although humanizing these disorders is incredibly helpful and an important part of advocacy, I find it limiting that some people think this is the only way to break the stigma or that anonymity adds to the stigma. Through Penny, I have learned that there are so many people out there who want to help and share their stories, but for a variety of reasons do not feel comfortable doing so publicly. As much as we are trying to destroy it, stigma still affects many of us and it influences different people differently. Requiring people to attach their identity to all their advocacy silences the voices of so many people and often specifically prevents people from sharing their experiences with especially stigmatized symptoms, such as taboo intrusive thoughts in OCD.
We decided to remain anonymous (using only our first initials) for the first two years of Penny because we had our own reasons for not feeling ready to go public about our stories. When we decided to go by our full first names earlier this year, we reflected on how much of a difference we were able to make anonymously. We aim to spread the message that anyone can be an advocate and that not all advocacy has to be big. Our followers, who anonymously submit their intrusive thoughts, are able to help others tremendously without even sharing their names.
We hope to create an inclusive community of advocates in order to work to break the stigma around OCD so that someday people won’t feel the need to remain anonymous. However, until then, we believe that allowing for anonymity is key to making space for the voices of people who feel the stigma the most.
You both have OCD. When were you diagnosed, and how long did you experience symptoms before diagnosis?
Cassie: I was first diagnosed with OCD during my sophomore year of high school when I was sixteen. However, I have had OCD for as long as I can remember. I have specific memories of moral scrupulosity all the way back to preschool.
Darcy: I’ve always been an anxious kid, but I didn’t start experiencing full-blown OCD symptoms until I was a sophomore in high school (age 15). I was lucky to know pretty quickly that what I was experiencing was OCD, since at the time my obsessions and compulsions were pretty stereotypically germ related. I was diagnosed only a few months after beginning symptoms.
Once you were diagnosed, how did you go about treating it?
Darcy: After I was diagnosed by a therapist who claimed to treat OCD, we began ERP therapy. However, she wasn’t fully trained in effective exposures and would tell me to distract myself to lessen my anxiety. This actually made my OCD much worse. Also around this time, I began struggling with anorexia. Since my therapist at the time did not treat eating disorders, I switched to a new provider who specialized in both eating disorders and OCD. She was well trained and knew a lot about ERP and effective OCD treatment. By then, my symptoms were so debilitating that my therapist and I decided it was best that I seek residential treatment. In the summer of 2016, about a year and a half after first being diagnosed, I attended the OCDI Jr. (inpatient treatment for kids with OCD) at McLean hospital. There I was given intensive ERP treatment and finally began fighting my OCD (and winning)!
Cassie: I began therapy with a psychodynamic therapist because I didn’t know I had OCD. I first found out I had OCD by googling some of my thoughts. Luckily I found a psychiatrist who was able to refer me to an OCD specialist who specialized in ERP. I also found a treatment group as well, where I met other people with OCD and felt less alone. After a year of weekly therapy with an OCD specialist, we decided that I needed more support so I completed a local intensive outpatient program (IOP). In IOP, I did intensive ERP treatment and began to feel much better.
Can you share some of your obsessions and compulsions? What has challenged you the most in your journey?
Darcy: When I first began struggling with OCD, almost all of my obsessions and compulsions were around contamination. I avoided shaking people’s hands, touching doorknobs, and sharing items (e.g., pencils, erasers) in school. Then I began to become more focused on my food being contaminated. I refused to eat food prepared at restaurants or by friends and family. I stopped eating my mom’s cooking and survived on frozen meals and granola bars. I didn’t even let myself touch the food I would eat without a long washing ritual. I also had fears about my bed being contaminated. I had to wash my sheets, pillows, and PJs consistently, and shower and sanitize my feet before getting in bed at night. I wouldn’t attend sleepovers or travel. After attending the OCDI Jr. and lots of ERP therapy, these obsessions and compulsions went away. My only remaining contamination obsession is the fear of swimming (my OCD tells me pools, lakes, and oceans are dirty and disgusting). However, this summer I’ve been slowly doing ERPs around pools and hopefully I will be able to finally swim again after five years of being ruled by my fear! Currently, besides my fear of swimming, I struggle with ROCD (relationship OCD), moral scrupulosity (fears that I am secretly a horrible person and will somehow reveal this to people), and symmetry compulsions around having to feel “just right.”
Cassie: My OCD began with moral scrupulosity in preschool. I worried I was a bad person for all sorts of reasons. Moral scrupulosity remains my biggest theme today. In high school I also developed suicide OCD, something I worked on during IOP. I worried that I would become so depressed that I wanted to die and would kill myself. I did not want to die, but yet I was still plagued by these thoughts. Moral scrupulosity has recently combined with meta OCD to make me worry that I don’t actually have OCD and am faking it for attention (and therefore am a terrible person.) I have trouble filling out mental health forms such as the Y-BOCS because I worry I will lie and manipulate my therapists.
How are you doing now?
Darcy: I have never been more mentally healthy and comfortable in my own skin (wow, that was amazing to type)! I have my ups and downs, still attend therapy, and definitely still have OCD, but I have the skills to fight back. Speaking out and becoming a mental health advocate has been a huge reason I am doing so well. It feels like I can finally breathe again!
Cassie: I am doing much better than when I initially started treatment, but I still struggle with OCD daily. I am working hard on my ERP therapy and continuing to improve and face my fears. I am currently also doing transcranial magnetic stimulation (TMS) to help with my OCD. I am so lucky to have a great community supporting me! I am thankful to have found the OCD community and some great ERP therapists.
What do you consider the biggest misconception about OCD?
Darcy: People think it’s quirky, when that couldn’t be farther from the truth! When I attended summer camp at the height of my germaphobia, people thought my excessive use of hand sanitizer was funny and some kind of personality trait. They made jokes about triggering me and kept telling me how I couldn’t actually avoid germs. OCD certainly isn’t logical, and it’s definitely not a quirky personality trait, so this was immensely frustrating. I wish I had the knowledge back then to explain how these misconceptions are harmful. I just stayed quiet, believing I was alone in my struggle.
If you could share just one piece of advice with others who have OCD, what would it be?
Cassie: Make sure your therapist uses ERP and is properly trained to do so. ERP has been incredibly helpful for me. So many therapists out there, many of whom claim to treat OCD, do not use ERP, so it is important to interview possible therapists about their experience treating OCD with ERP.
Darcy: You are not alone—there is a whole community of brave people fighting their minds every single day, just like you are.