I had the joy of meeting with Elise Petronzio—a well-known OCD warrior and a trusted mental health advocate in the OCD community. She is the founder of the ocdopus, an OCD advocacy, and recovery shop.
You may be familiar with the merchandise Elise Petronzio sells; her online store ocdopus is widely known for her pink elephant stuffed animals. As her personal favorite item, the pink elephant is a reference to a widely-used metaphor in exposure and response prevention (ERP) therapy—often, we ask the people we work with to try not to think about a pink elephant. Without a doubt, they instantly think of a pink elephant. This goes to show you that when you try not to think about something, your brain cannot help but think about it!
This is what living with OCD is like: the more you try not to think or feel something, the more it gets stuck in your brain. Whenever I meet someone in the OCD community, I am curious about their story. What led them to become part of this work, and what keeps them so committed to it?
Struggling without knowing what she was experiencing
One of the most unique things about the OCD community is that there are so many people who have experienced the effects of this disorder firsthand. They know the devastating impact it can have, and they want to help others. They want to make a difference in people’s lives. Elise is no different—she truly feels passionate about this cause.
From a young age, Elise knew that she experienced anxiety—or at least that’s how her family explained her behaviors. Following a physical illness, she seemingly changed overnight: once a happy-go-lucky child, she suddenly became filled with anxiety and riddled with compulsions. It was this rapid change in behavior that would later lead her to believe that she had experienced PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) or PANS (Pediatric Acute Neuropsychiatric Syndrome), both of which there is still much to discover about. The symptoms of these illnesses can be dramatic and may appear overnight. The child may become suddenly anxious or irritable, experience symptoms of OCD, and display extreme mood and behavior transformations. (To find a doctor who may be knowledgeable about PANDAS or PANS, contact the International OCD Foundation, IOCDF, or the PANDAS Physicians Network.)
Though Elise was able to enter therapy soon after her symptoms began, the therapist treating her was not trained in OCD and did not have a background in treating it. This situation only made Elise’s symptoms worse, a common experience for many people with OCD. Later, she saw a new therapist who utilized some elements of exposure and response prevention (ERP) therapy, but never diagnosed Elise with OCD or educated her about what she was experiencing.
By this point in her life, Elise still did not know that what she was enduring had a name. All she understood was that she had anxiety, since that’s how professionals always described her symptoms. It seemed to her like that description fit what she was experiencing, so she accepted it. Even in 2006, psychoeducation about OCD was not as easy to access, leaving Elise and her family in the dark.
When she began attending college, she knew that she wanted to make a difference in the lives of others, and she was drawn to the mental health field. Elise joined her university’s chapter of To Write Love on Her Arms, a nonprofit organization dedicated to raising awareness about mental health. Through her participation, had found her niche: she found it fulfilling and quickly wanted to become more involved in advocacy. She knew that she was passionate about helping people with mental illness. It is this work that inspired her to go on to work at NAMI (National Alliance on Mental Illness) in New Jersey.
Around that time, Elise’s anxiety started to flare up again. She started to experience intrusive thoughts, and Elise realized that she needed help. She wanted to finally get to the bottom of what was going on in her brain. After looking up intrusive thoughts, she stumbled across the term “OCD.” She was stunned at what she read. She finally understood what had been happening to her for all of these years.
Empowered by what she’d learned, she immediately sought out treatment and received a proper diagnosis of OCD. After years of being treated for generalized anxiety and not getting the appropriate treatment for OCD, she finally felt she was on the right track. She could now get ERP and begin to recover from OCD. She finally had a name for what had tormented her all of these years.
Making OCD awareness and treatment education her mission
Learning about OCD left a lasting impression on Elise’s life, and she made it her mission to educate others about the reality of the widely misrepresented disorder. In 2018, she attended an IOCDF conference where she was introduced to a whole community of like-minded individuals who wanted similar things: awareness about OCD and help for others to get the right treatment.
This experience led her to pivot her advocacy to OCD and related disorders. She knew firsthand about the lack of awareness that existed in the media about this disorder. She saw how distorted information about OCD perpetuated the stigma surrounding it. She was amazed at how media outlets and even stores made light of the topic of OCD, often confusing what OCD really was.
When Elise saw merchandise casually and incorrectly referencing OCD, making offensive jokes like “Obsessive Cleaning Disorder,” she got the idea for the ocdopus shop. Elise identified a need for accurate merchandise that depicted the real OCD, not the OCD seen in popular culture. She felt that if more accurate information about OCD was available to the general public, more people could recognize their own OCD and get help quicker, and children could be diagnosed and treated properly at a much younger age.
Elise found that through the course of her own recovery, she benefitted from tangible reminders of what she was learning in ERP, and she thought that others might as well. She started slowly, creating stickers with common phrases that she had found helpful in therapy. She used ERP treatment phrases like “embrace uncertainty,” “values over fear,” and “maybe, maybe not,” and she incorporated these sayings into one-of-a-kind merchandise. More recently, she has expanded her products to include items specific to other related disorders, like body-focused repetitive behaviors (BFRB’s).
As her love for her work increases, Elise continues to expand her outreach. To cope with the demands of a rapidly growing business, Elise tries to keep things fun and admits she is just taking it day by day. As she puts it, “living in uncertainty is the best exposure.”
Giving back after finding recovery
Recently, the ocdopus store donated a year’s worth of stuffed animals to two major OCD residential treatment programs for children and adolescents. For each pink elephant stuffed animal purchased, one is donated to a child in intensive OCD treatment. It’s been so popular, the store is currently sold out!
Not to worry: the store will continue the donation program when more pink elephants arrive this summer. Currently, there is a waitlist to purchase one and help kids in intensive OCD treatment, and you can join on the ocdopus website. The store also sells stickers, jewelry, clothing, hats, and more items.
If you’d like to learn about ways to help support this cause and make a difference in the lives of people with OCD and related disorders, please visit the octopus site at https://www.theocdopus.com. You can also keep up with the ocdopus and learn more about Elise’s advocacy work at @theocdopus on Instagram and TikTok.
Finding hope with ERP
An important part of Elise’s recovery journey was finding the NOCD community and later receiving specialized ERP therapy through NOCD. This form of therapy involves specifically targeting the source of your obsessions by directly exposing you to it. In many cases, people find that ERP helps their anxiety subside to the point where they no longer experience intense fears related to their thoughts on a regular basis.
If you’re struggling with OCD and are looking for treatment that can help you get better, NOCD is here for you. Our licensed therapists deeply understand OCD and are specialty-trained in treating OCD with ERP. We work side-by-side with the OCD experts and researchers who designed some of the world’s top OCD treatment programs – and that means the best care for our members. You can book a free 15-minute call with our team to get matched with one and get started with OCD treatment.